Just What is Parsonage-Turner Syndrome? (aka Neuralgic Amyotrophy)

Short Updates

2012-01-20T15:04:00.000-08:00

Well, where am I, you may ask. It has been a while.

Push-ups: I stillseem to be stuck at being able to do 5, and that is with a lot of shaking. Somethings do not ever change.

DHEA: I have started DHEA again at 50 mg a day. This is a 25 mg tablet twice a day. Why? Well, I thought I would give it a trysince every eye doctor I have asked about it says DHEA had nothing to do withmy eye pressure spike of a few years ago. I see that 50 mg is a suggested daily amount that may be beneficial foraging types, which includes me. So far, I really have noticed a decrease of myfine motor tremor since going to 50 mg a day. It does not seem to help much on shaking, asnoticed on almost anything I do requiring any strength.

Prednisone: There have been a couple of times since the last entry whereI have experienced pain in both scapulas, and some pain in my right hand. This wasnoticed when I made a fist. I took a 10 mg prednisone a day for a few days, andthat stopped that.

Cause and effect or coincidence: I just note what appears to have helped me. Recognize thatit all may be coincidental that I notice DHEA helping tremor, since it is notone of the probable benefits as listed in the literature of DHEA. Ditto thatfor prednisone helping scapula and hand pain. Your mileage may vary.

Why is the shoulder the most common first complaint in NA

2011-12-15T14:50:00.000-08:00

http://www.umcn.nl/Informatiefolders/7130-Neuralgic_Amyotrophy__id-i.pdf

If you are like me, youmay have wondered why it is that the shoulder is the most common first noticedcomplaint in Neuralgic Amyotrophy attacks. Maybe it never crossed your mind afterall. I figure, if there is a causalagent in the bloodstream, and it finds the shoulder plexus site to attack, itis just as likely to find other nerves at other plexus sites. It may be clever, but is it really smartenough to be that specific? If you listento most doctors, they would suggest “yes”, it is that specific. If you have any other issues in other areaswith weakness, it is either all in your head, or you have something else theycan charge thousands of dollars to test for, and come up with nothing. “Oh well, nothing wrong with you- got toscoot”.

If youread the document (linked above), there are two things talked about whichsuggest a reason for the shoulder being the most common joint impacted withNA. It begins with overall muscle loss, andends with the efficiency of muscles to do work with impeded nerveconnections. The author first speaks of muscleloss, stating that

“Indaily life, people generally do not notice that they are losing muscle strength

untilthey have lost around 30% of their maximum strength. The strength that lies

between70% and the maximum of 100% is, as it were, ‘extra’ in case heavy exertion

mustunexpectedly be made.”

So, youcould have an attack of NA that leaves you with a gradual loss of muscle strengthto say 75% of normal, and not even notice it. I think this actually happened to me, looking back. I had had an attackthat impacted my right hand and left my arm weak. But otherwise, I had no cluewhat was going on, except, on a long car trip, I noticed a bit of shaking attimes getting into or out of the car.

Timepassed, and one night I woke up on my right side and noticed that my shoulderpopped, and collapsed a bit. There was no pain, just the sensation of settlingthat did not feel normal at all. Why wouldthis be important? Look to the document again.

“Formost of the muscles, one can say that they function well in daily life

oncethey have regained 70% of their former strength. However, some muscles

musttruly be nearly 100% recovered before they can function normally again.

Themuscle that, when it fails, causes a protruding shoulder blade, (the serratus

anterior)is the most important example of this. Because this muscle needs its

maximumstrength and endurance in order to work well, it sometimes seems as

ifrecovery of the nerve to this muscle takes much longer than the recovery of the

othernerves.”

Itwould seem possible that the muscles surrounding the shoulder are a bit more sensitiveto nerve loss than other sites in the body. So that may explain why the shoulderis the first noticed spot that NA impacted, when truly, it is everywhere tosome extent. They go on to say:

“Withneuralgic amyotrophy, the strength in the affected muscles is often decreased

to(much) less than 50% of the maximum. It is often not even possible

anymoreto carry – or lift – the weight of the arm itself, let alone an extra weight

(forexample, a purse or bag). It also becomes difficult to maintain movement or

postures.It is sometimes possible to make a specific movement once (such as

extendingthe arm or putting something in the cabinet above your head) but it is

notpossible to do that a number of times or to keep doing it for a specific period

oftime. Both the loss of strength and the difficulty with maintaining movement

areserious impediments for NA patients in their daily work, sports or activitiesat

home.”

Add tothat that any regained strength may be to a lesser amount than what existedprior to the attack. For HNA sufferers, this is augmented by having many more attacksover a lifetime.

Speakingof returning strength. . . Do not do as I did and force it to get better. Heavy exercise prior to complete healing canlead to further nerve damage and make that nerve even more susceptible to furtherattacks in the future.

“If,within a nerve bundle, no more than two thirds of the axons are damaged, then

theremaining axons will take over the work of the damaged cables within three

to fourmonths. This mechanism is called: ‘collateral reinnervation’. This repair

mechanismworks well because the muscle can then again be completely controlled.

However,this is at the expense of some load endurance. That means that the

musclecan certainly provide maximum strength once but cannot maintain it well

or keepit up for long. In daily life, patients often notice that, after a time, theycan,

inprinciple, carry out all of the movements with the arm, but that the armbecomes

heavyand tired after being used for awhile and they must stop and rest before

theycan continue with what they were doing.”

“If thenerve has been affected a number of times, the chance of recovery decreases.

Also,nerves are not able to tolerate everything: If they become even more

damaged,they will be ‘broken’ for good. In practice, this means that the function

of, forexample, the arm after an initial period of painful loss of function will still

recoverfor the most part, but that, after a second or third time, will not recover as

completelyand, ultimately, will not be able to recover at all. The loss of strength,

butalso the disorders in sensation and blood supply to the skin, then become

permanent.”

Let me repeat- This is great information- A must read for NA sufferers or caregivers

2011-12-13T21:05:00.000-08:00

From : [1] Information on hereditary and non-hereditaryNeuralgic Amyotrophy for patients and caregivers
http://www.umcn.nl/Informatiefolders/7130-Neuralgic_Amyotrophy__id-i.pdf

One thing clear in reading this paper is that my weakness is explainedtotally by Neuralgic Amyotrophy. No other undiagnosed disease is necessary. Itstates in other words, that as nerves re-grow, it is possible to regain movement of a previously lost arm function, for example. But, the nerve re-growth maynot be complete, allowing for one use or maybe a couple, before having to takea rest. The stamina to have multiple “reps” of an exercise for example, isreduced. The muscles used fatigue very easily. Maybe, this is what my neurologist was attempting to tell me a few yearsback. He just did so very badly. Thisguy nails it.

One other thing relates to balance (inner ear) function and hearinglosses. I have had a bit of changes to particularlymy left ear. I have constant tinnitus. I have on at least two occasions hadvertigo type sensations. One of those was with Nystigmus. Again, I thoughtthese symptoms may be related more to other diseases than Neuralgic Amyotrophy.This paper explains that although it happens rarely, NA can impact hearing andbalance. My ears were not impacted this way until after my NA attacks.

My mind is a bit more at ease since reading this paper.

Overall, if there is only one document you ever read about the causesand impacts of Neuralgic Amyotrophy, this one would be among the best. It has alot of information and is very easy to understand. I have included a permanent link in my Linkssection of the blog.

Information on hereditary and non-hereditary neuralgic amyotrophy for patients and caregivers

2011-12-11T15:48:00.001-08:00

From Wikipedia, we now have access to this document in PDFformat that is in the external links secion of the references. http://en.wikipedia.org/wiki/Hereditary_neuralgic_amyotrophy

[1] Information onhereditary and non-hereditary Neuralgic Amyotrophy for patients and caregivers
http://www.umcn.nl/Informatiefolders/7130-Neuralgic_Amyotrophy__id-i.pdf

Byclicking on the blue [1] above, it should take you to one of the more comprehensiveoverall reviews of Neuralgic Amyotrophy I have seen yet. Check it out. It answered a few questions for me.

More about Myasthenia gravis

2011-11-14T15:13:00.001-08:00

Related to the Myasthenia Gravis possibilities, thereseems to be a “stress component” to MG as it can be an initial firstcomponent to the disease appearing, and exacerbate the symptoms. See http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1945958/pdf/canmedaj01318-0018.pdf

This is interesting to me, because I have felt all alongthat my issues are stress related. Sure, NA can have stress as a trigger also,but that seems to be just related to original onset. The talk with MG seems to be that everydaystresses can make you feel worse right then at the time of the stress. Still, this is no smoking gun, as the sayinggoes. But it is interesting to me.

Weakness continues

2011-11-14T15:01:00.001-08:00

Weakness is a strange thing after a while. I still findmyself wondering if the source of all of my weakness is NA. It fluctuates a bit from time to time but is alwaysthere at this point. Yesterday seemed tobe a peak in the weak category as I found it almost impossible without extremeeffort, to stand from a seated position. Shaking and straining all the way, I was able to stand. Does that sound like anything you read abouton NA/PTS sites? Not really. Weakness isa part of this, but how much is NA/PTS related is still not nailed down forme. What else could it be?

I still go back to the possibility that part of thisweakness could be related to Myasthenia Gravis. But I know that what I feel is nottext book for MG either. Sure, I havehad double and blurred vision, particularly prior to my shoulder issue in 2006.But when I see how those symptoms relate to MG sufferers, my eye issues seemsmall by comparison. My eyes whentested, do not droop, and do not seem to suggest to doctors that MG could be anissue. But, 20 minutes into reading can make my eyelids shut down, and visiongo double.

I see where MG can present as leg weakness impacting abilityto stay standing, and that does sound like me. I start a task that has me bent over at the waistand within minutes, I can feel my back not supporting me, and if I push, I haveto get down before I fall down. It couldbe NA, but also MG? Who knows?

When I am able to do sit-ups, and I pause for a minute andtry to do more, it does not happen. The musclesjust do not want to work again that quickly. Is that more MG than NA? I wish Iknew.

It pays not to be Too sick-

2011-10-25T17:00:00.000-07:00

Not directly related to PTS, but relevant just the same-

Recently a friend told me the experience with Facility feesthat seem to be what more and more doctor/hospital relationships are goingtowards. For example, in the past you may have had a doctor who had an officein a building owned and run by a hospital. You saw the doctor, and he/she billed an amount to cover the treatmentplus whatever other overhead was involved with the visit. And then it was up tothe doctor to pay rent so to speak- and cover what that overhead provided by thehospital may be.

Now, it seems, doctors are being squeezed- probably mainlyby Medicare, to provide good patient care, and be reimbursed for less thanenough to pay their time, and the fees to the landlord (hospital). For Medicare patients the fix is already inplace. They separate physician charges and facility charges. For private pay, or private insurance, thingshave not been set up that way, until now. Doctors who cannot get reimbursedsufficiently to pay the land lords are entering into agreements where thehospital will take over the billing for facilities charges that have not beenseparated out previously for private insurance and private pay.

Recently a friend went to a specialist who had offices in abuilding run by a local hospital. They hadgone to this doctor before and expected to be billed only for a regular doctorvisit. No one at the office said anything different would happen. What didhappen was they got billed for the doctor visit, and also for a facility fee bythe hospital. Long story short, the facilityfee was twice what the doctor had charged. For example, the doctor charged around $120 for a certain level ofoffice visit. The hospital billers took that level of visit and plugged it intotheir model. Out popped a charge for $220.00. This was for a 15-20 minute visit where the most that was used was a stethoscope,thermometer and scale for the weigh in.

After a lengthy argument that went up three levels ofsupervisors, the hospital agreed that the charge was excessive for what they did,and no doubt their protocols need revamping. They also agreed to reverse the charge totallysince they had not chosen to inform patients that this change was happening,and they should have.

Be careful of unexpected charges, or charges that seemexcessive. I wonder how many patients inthis new hospital run group will just go ahead and pay instead of questioningthat $200 plus facility charge? Don’t beone of them!

Flu shot or not?

2011-09-25T17:37:00.000-07:00

I know that PTS can be triggered by flu shots and if youhave a past PTS event you have attributed to this you may wish to opt out offuture flu shots .

I have had at least two PTS events over the years andmaybe more really if I look back with present knowledge of symptoms I did not have at the time. I have had flu shotsthe last three years and none of my past PTS symptoms were at all a part ofthem.

Maybe this is because I have the inherited type of PTS.Maybe the flu shot triggers an attack in a different way in those withinherited PTS. I guess in any event Icould still be save and not take a chance but at this point maybe the flu isthe bigger enemy to my overall health and to the health of those around me. Ichoose the shot. If I get a bout of PTS so be it. I am bound to have an attackat some future time anyway.

tremor causes shift to right hand trackball use and other updates

2011-08-12T14:15:00.001-07:00

The tremor with my left hand is now at the point I have had to change back to using my right hand for my trackball. And quite frankly, the left hand feels like it is not mine right now even typing this. It seems as if it is taking a bit more concentration than usual to type. I have been using my left hand for trackball use ever since 2001 or so when my right hand was subject to my first documented NA attack. Recently I have had increasing difficulty getting my fingers of the left hand to cooperate and smoothly move the pointer. Also, if I have to select text in this way, it is almost to the point of being an impossible task left handed. Now, after ten years of left handed trackball use, it is very odd to see that thing over on the right again, and even seeing it there it is hard to stop reaching for it on the left side. I guess I had the same trouble initially when I switched from the right side to the left. I will get used to it. I am not sure I will ever be used to the tremor though.

And this tremor is not just on the left. It is also on the right, built the right side tremor is a bit less invasive in everyday tasks. It is interesting that I even now at times think I am getting better as far as the tremor goes. Then I try to do some simple task requiring both hands and it is all I can do to keep them steady enough to come close to doing it. The trackball is one thing. Using a nail clipper is getting a bit hard if I use the right hand to clip the fingers of the left. Oh well. There are worse things out there to deal with.

Pushup strength is still way down.

I tried to do a yard related painting project the other day. And I was able to do it, but slowly. I had to reach out in front of me and upward to stain wood on the underside of a roof. After a couple of seconds of brushwork, I had to drop my arm. Then after a sort rest, I would apply more stain and then a few more seconds of brushing and I would have to drop my arm again. There is no pain associated with this action, even if I push it with all my strength. What causes the arm to drop is simple muscle fatigue. There is just not enough muscle stamina to hold my arm out and do something with it. It has been like this for close to ten years. It never gets any stronger.

push-ups gone again

2011-07-21T15:47:00.000-07:00

Oh well. I am now back to 4-5 push-ups. One of these days I will work back through the dates and figure out the cycle of strength, or lack of it. No, I probably won't. If I thought it mattered I would. I guess it is fine for me now just to know that whatever strength I feel one week will be gone after a week or two.

Update update

2011-07-10T11:18:00.000-07:00

Well, it goes on.

A few weeks ago, I noticed that my tremor had been going away a bit. Corresponding to this time span, my strength had returned a bit. I noted earlier that I was able to increase my push-ups to 25 or so. Now the last few days I see my tremor returning again, and as you might guess by now this also has corresponded to a decrease in the number of push-ups I can do- which has now returned to around 10. Also in this time I have noticed my left leg has been weaker again up near the hip. I have had brief stabs of pain in my left knee and foot. Prednisone has helped this left leg issue. Oh, and if that is not enough, my left arm also had some pain in the shoulder area followed by more weakness. Again the prednisone has helped this feel more normal.

This left leg issue is curious. I know in the past my doctors have been quick to point out that my right arm was weak because I did not use it as much as I used to, favoring my left arm instead. And then my left arm was growing weaker due to over-use. Well, the leg issue sort of shoots this theory down. It is not as easy as they may think, to favor a leg over the other one- even giving them that it might be possible to do this with the arms. If you walk on two legs, other than hopping on one foot, how would you favor one leg?

Recently I had to walk fairly quickly at least a quarter mile if not more. About halfway into this I felt my left leg start to fatigue a bit but kept on at a slightly slower pace. My left hip and upper thigh never recovered from that. The muscles still feel fatigued. My right leg feels much the way it usually did, except it still shakes when I try to exert it for long periods of time. People can see that I have a slight limp as I walk. Doctors especially, think that this limp is caused by pain. They assume it anyway. Nobody has asked me how it feels. There is not really pain as I walk anyway. It is just that the muscles of my left leg do not work the same as those on the right. This causes a bit of an extra swing of my left leg to make it go. That swing makes up for the lack of muscle control and makes me look a bit lopsided as I walk. Not all limps involve pain. This one is just to compensate for lack of muscle control in upper leg.

now back to 25

2011-06-29T14:22:00.001-07:00

Well, I just did 25 pushups. The last time I tried, it may have been around ten just a few days ago- and those were shaky. Just now, I did not get any shakiness until the last couple. I may have been able to push it to 30, but why bother? It is not like a PE instructor is breathing down my neck. I would like to consistently hit 25 at least. I am not sure why I could do more just now, but I have noticed a bit of improvement in my tremor in the last week or so. Maybe they are connected.

Strength update

2011-05-23T15:29:00.001-07:00

Well, I am back down to 10 pushups and those are a struggle. Also, I attempted to do a bit of yard work yesterday keeping in mind that I have to watch what I try to do. I seemed very shaky during this and that actually helped me to limit what I tried to do. But, I still had problems later; a tender pain area under right scapula and a feeling of weakness (if I can get any more weak) down my right arm. That arm issue seems better today, but I still notice a pain under my right scapula.

A new cycle of strength?

2011-05-07T19:04:00.001-07:00

Well, for whatever reason, I have been having a cycle of strength return since about the time my bad tooth was removed. I am now up to 20 pushups. Actually, I did 20 followed by 15 a few days after the tooth was removed, but then it dropped back again. Over the last week or so, it has built up again. No doubt, it is just a coincidence as other cycles have also been. One thing does not imply another. Of course no doctor would ever suggest that the overall health of my teeth had any impact on NA symptoms, or vision problems even.

That second part I know since I have already asked my eye doctor if my tooth infection could ever have impacted my vision health. Of course, he said no, and then suggested- Not that I know of anyway. I had mentioned that I have had a minor improvement of reading ability. Prior to dentists getting involved with my mouth, I had noticed my ability to read was diminished at least partially by stinging and tearing within minutes of starting to read. Eye doctors suggest that is due to dry eyes and of course there are drops for that. What I had said of course was that prior to my tooth removal, I had this symptom, but not since. And overall, my length of reading ability has also increased. They do not hear that part. And continue to suggest there is not a link between infection and eye health. One other thing eye related is that my intraocular pressure was even in both eyes this most recent time checked. Even as pressures have declined with medication over time, the two eyes have varied quite a bit. Of course, pressures should be even in each eye even if they are elevated. This had been a concern of my doctors. Now that it is even in both eyes, they do not even comment on the fact that my eyes have never had equal pressure since any of this has started.

How is any of the vision stuff related to NA/PTS? I wish I knew. Maybe it is still a coincidence that the two conditions started up around the same time. Maybe my teeth impacted both issues.

A few days later. . .

2011-04-25T15:32:00.000-07:00

Well, I had mentioned I felt like I had been hit by a truck after my extraction of infected tooth. I was weak, and with aches and even a fever of 100.7 for at least part of it. Now, it has improved again and I am noticing that at least one previously tender lymph node has returned to standby mode. It must have been switched on so long I had stopped noticing it was there. And, since no doctor ever seemed to notice it either, even if they took the time to look, I guess I started to take it for granted that it should feel like that. I almost seem to remember thinking that tenderness might be associated with my NA. And who knows? Maybe it was- just not in the way I had thought. Maybe my tooth infection was the cause of the NA flare-ups and tinnitus in ears and even my eye issues. It is too soon to have any definitive proof. But a few days after the flood of bacteria has been handled by my autoimmune system, I do feel better overall.

I feel a bit less weak than before, but due to cyclic nature of this in the past, I could just be going through a stronger cycle. But, I suppose that the nature of infection could support cyclic changes. My reading ability may even have improved. Prior to extraction, I would start reading and have instant stinging and tearing of both eyes. The first time reading after things stabilized a bit seemed almost normal. That is probably a coincidence, but it has been a long time since I have pad no eye related issues after starting to read a book.

We shall see how things progress, or if they do. It probably is just coincidental that I feel any different at all. But, it is a good reminder too to keep watch for those teeth. They may be a good source for things that could be adding stress to your health.

To pull or not to pull: a question of possible tooth infection

2011-04-22T14:45:00.000-07:00

Here is something else to consider as far as discovery of a cause for PTS starting- maybe, and I stress maybe, since I can’t find anything out there that alludes to what I am going to say. And that is, what about your teeth?

OK, I have to admit I have not been particularly tuned in as far as my teeth have gone for a few years anyway. It is for any one of the common issues; no time to see a dentist regularly because other health issues take precedence, no insurance or too little insurance to do any good, no job or other income to defray the possibly huge expense, or you just do not see anything up there that is amiss and there is no pain. Well, I guess you can have things going on even if you have no visual or pain related clues. And some of that should be dealt with insurance or not. OK, and now I see there are low cost clinics out there I didn’t not know about so there is really no reason to put off that visit.

So, as it went, I had some infection in the root of a tooth. Is this enough to cause a bout of PTS or any other autoimmune disorder? My hygienists and dentist suggest it could. But the only thing I can find out there about this sort of a link goes the other way. Namely, talk of autoimmune disease causing dental problems. Go figure. Infection is infection, and if it is noticed by your autoimmune system, it might just never turn off until that source of infection is removed. That is the theory anyway to lead to removal of that tooth. One issue I take with my own case is that my dentist did not give me any antibiotics to help kick the infection. He suggests that with the tooth gone, the source of infection will be gone and therefore the reason for the autoimmune system response. I wish he had opted for antibiotics anyway. I feel I have been flooded with infection now and I hope he is right about not paying any attention to that. We will see. Or I should say I will see since I do not see him here anywhere. I feel as if I have been hit by a truck, and it can’t all be due to trauma of having a tooth pulled.

I will let you know if any of my other symptoms improve now that the infection source is gone and has been dealt with.

Weakness continues and irritability

2011-03-28T16:12:00.000-07:00

I really am getting tired of this at this point. I never know if I will be able to stand in one fluid motion. Usually, it is not in one motion but in a series of starts and partial stops. My legs seem to be worse in general than before. Usually the left leg recently has bothered me but today it was more noticeable in the right one. Maybe this actually was a good thing because it evened out my stride a bit and I was able to walk faster overall than recently.

My left arm/hand seems to tremor a bit more than my right and that is fairly consistently how it goes. And today as I said my right leg got a bit worse as far as weakness and tremor. Actually, maybe tremor is not the right word. I had been on a step-stool for maybe 10 minutes. When I got off it, I could not put full weight on my right leg without it twitching. So, if that is a tremor in the leg, I have not noticed that before after such minimal activity as standing on a step-stool/

And I am a bit more irritable than in recent years.

Is this a part of Neuralgic Amyotrophy? Or is there something else? I still worry about that.

This is NOT Turner Syndrome

2011-03-10T16:33:00.000-08:00

Sometimes I look at reports to see just what people are searching for when they pop into my blog. It is interesting to see that I am not alone in some of the things happening to me, at least judged by the searching terms used to get here. One thing I should mention from time to time is that Parsonage Turner Syndrome is NOT the same thing as Turner Syndrome. If you are here looking for experiences that relate to Turner Syndrome, nothing I have said is related to you. This is one reason I usually refer to what I have as Neuralgic Amyotrophy. That way, no one gets the wrong idea by only remembering a part of the name, or only one of the two doctors associated with it. Doctors Parsonage and Turner were the first to describe this syndrome, and that is the reason those names are associated with it. Turner Syndrome is a totally different thing.

DHEA for tremor and strength issues

2011-03-09T15:56:00.000-08:00

I had mentioned that I was trying DHEA for some control of tremor and better strength, and at first it seemed to be helping. It still may be except it seems the help to my tremor and strength comes at the expense of my eyes. The longer I used the DHEA, the more irritated my eyes became. My eyes got tired earlier and earlier each day. I also noticed this in reading, or trying to. It got to the point that after reading for a few minutes, I noticed eye irritation. This lead to stinging and tearing of my eyes, and was rapidly followed by dryness. This gets a bit distracting while reading. So I stopped it.

Within a couple of days, I could read for increasingly longer intervals, and now I can read about as long as I want to. But, I have noticed the weakness returning and a bit more of the tremor again. It goes on.

The Internet is an amazing thing

2011-03-06T17:11:00.000-08:00

It is interesting that I see my little blog popping up when I search for information about HNA, or PTS. This time though it was a bit more weird. I was viewing stories from the Expereinces website I had linked the post prior to this one. I started to think, I have got to add a comment about this one post. The writer had pain in his lower back and his doctors said it could not be related to PTS. I was going to comment about how PTS can hit any of the plexus sites, and then saw that someone had not only beat me to it but they had left a link to my blog entry that talked about this.

Experience Project "I have Parsonage Turner Syndrome"

2011-03-05T15:15:00.000-08:00

This could be interesting for anyone wanting to see how others have dealt with PTS. There are not a lot sharing stories of their PTS, but it can give you an idea of what it is like for others. Or, you can join and submit your own story of how PTS impacts your life.

http://www.experienceproject.com/groups/Have-Parsonage-Turner-Syndrome/92246

Neuralgic Amyotrophy occurring with Rheumatoid Arthritis?

2011-02-23T16:39:00.000-08:00

Neuralgic Amyotrophy occurring with Rheumatoid Arthritis?

http://findarticles.com/p/articles/mi_qa3867/is_1_127/ai_n32054345/

This is a link to an article called “Neuralgic amyotrophy due to rheumatoid arthritis or etanercept: causal association or coincidence”. Among other things, it suggests that NA may be more prevalent than generally thought.

Strength update and more- or less

2011-02-23T16:13:00.000-08:00

The last time I could do push-ups. . .

Well, that would have been towards the end of last September. Since then, I seem to have been stuck on being able to do 3-4 at any one time. At the same time, I have seen a decrease in my ability to stand for more than an hour or two without lower back and upper leg muscles feeling so weak, I have to sit.

This reminds me of a time before either of my known flares, so this goes back to maybe the 1997/98 time span. I also remember noticing my upper legs tremor a bit in that time after exertion. This has me wondering if my legs and back were early signs of NA flare at that point, since this pre-dates my hand issue by close to three years. But I also have a memory of a time in that general time period where my job had changed and I noticed a slight pain (compared to what followed a few years later) in my upper right arm. I remember noticing that arm pain and even telling my employer at the time. But the pain went away, so it never was officially part of my medical history.

I had other neck and shoulder pain episodes in my earlier days- none of which were ever reported to doctors since I had no insurance at the time, and they were not workman’s comp issues at the time either. I guess I am just wondering how and when this all really started. It may well be I have had mini-flares most of my life. All of these mini-flares have taken a toll on me since they seem to be additive in nature, and I have reached a point of diminishing returns.

My current “weak” period is at five months long, and counting. I am not sure why I bother counting it actually since there have only been three or four weeks of more or less normal strength over the last four years. I guess it is safe to say that I have recovered all from my 2006 episode that I will ever recover- and that is not saying much. At times I still feel as if I am still growing weaker as time goes on.

More Social Security Disability stuff- I am approved

2011-02-19T17:06:00.001-08:00

Now I know it can be done on a more personal level. When I had my phone interview at the time I applied, the caseworker asked me if I would like to set up auto-deposit for when and if I was approved. He suggested that it might be a quicker way to find out my approval status than waiting for the letter in the mail. Well, it was true that it was faster. I assumed my bank must have made a mistake until I looked up the transaction and discovered it was a direct deposit from the Social Security.

What I suggested a ways back is true. As it turned out, I have more than one thing going on that has impacted more than one limb. But the important thing is that what I have limits my ability to have a sustainable gainful employment. What I also want to say relates to attorney input, or even to those folks out there who help you in the application process. I would suggest it is worthwhile to attempt to do this on your own. I am not sure I see any way that anyone could have helped me do this any easier than it turned out, and I had a case that spanned more than 10 years with two workman’s comp cases thrown into the mix.

It takes a bit of organization, and it takes good record keeping all along the journey your illness or injury may take you. Keep copies of all your doctor records along with dates and who did what, when. Keep all reports. Turn it all in when you apply. Be truthful and complete in all answers. Be patient. I made my claim on July 10, 2010. I had my Social Security doctor exam on 12/2/2010. Money went into my bank account on 02/17/2011.

Usefulness of Nerve Conduction Studies in Neuralgic Amyotrophy?

2011-02-11T17:25:00.000-08:00

I have seen studies suggesting similar things before. this study suggests that the usefulness of nerve conduction testing may be questionable for NA because some of the lesions may be at the nerve roots and not at the plexus sites. This could be why my nerve conduction tests were not really that much of a help to me. My insurance covered them back then. Not now.

http://journals.lww.com/ajpmr/Abstract/2009/11000/Sensory_Nerve_Conduction_Studies_in_Neuralgic.9.aspx

Social Security Disability with Neuralgic Amyotrophy

2011-02-11T16:51:00.000-08:00

http://www.injury-and-disability.com/2010/11/parsonage-turner-syndrome-and-social-security-disability-benefits.html

This site suggests that a NA sufferer successfully negotiated the rigors of the Social Security Disability system to be granted disability status. Originally they were declined, but an ALJ Judge decided the combination of impairments with the side effects of required drugs created a disability.

More tremor and twitching comments

2011-02-09T17:54:00.000-08:00

A while back, I had noticed that my tremor had returned to particularly my right hand. This was especially noticed while holding a cup of coffee, or even later at rest after setting down the cup. Red flag, I know- at rest tremor can usually mean Parkinson’s and that does concern me. And, I have to admit, the possibility I have MS still is a concern too. So many overlapping symptoms, how do you pick what is right, or what to ignore? Is there a doctor in the house? Seriously, if there is and you would like to add your comments- or email me?

You might ask why I do not ask my own doctor, and if that concerns you- I will say “been there, done that, where is my t-shirt? “ Doctors I have run in to either do not know much about this, or are not willing to say what they really think once a test comes back. Besides that, the days of my good insurance coverage are done. My current insurance is poor to say the least, but I have to have something, don’t I?

Back to the tremor, this seems to come and go just like the twitches and- well, I was going to say my strength, but recently my strength has failed to return as it had been. I must be lazy. You know, I was just on a site NeuroTalk Support Groups where I noticed a MS sufferer talking of fatigue that got worse at the end of the day, or worse when stressed and made others suggest that she was lazy. I have gotten that too, from doctors. This is another reason I seem to not value what they think about my condition at this point. Anyway, as I was saying about tremor, it has come and gone.

First, I thought that Propranolol was helping, but no matter how I increased the dose, tremor would still break through. Then, when I dropped that I thought it had been zapped by magnesium. That worked at first and also seemed to increase my strength. Now that has stopped also. What now? Well, a couple of weeks ago during my tremor increase; I noticed pain at the side of my neck. I thought, here we go again. I thought of breaking into my prednisone stash but it is limited. I decided to first try DHEA (see http://en.wikipedia.org/wiki/Dehydroepiandrosterone). So far, I have seen the pain in my neck disappear first, and rapidly following my hand tremor. Why? Who knows? It is probably only a coincidence. But my arms also shake less when I use them. None of it makes any sense.

Glaucoma updates

2011-01-03T16:41:00.000-08:00

I guess now new research has suggested that glaucoma is more of a degenerative nerve disease than simply an eye disease and new treatments may be directed in slowing the actual degeneration of the optic nerve. Hmm. Maybe it was not as far fetched of an idea as it seemed that my particular degenerative nerve disorder could impact my optic nerves?

http://www.nytimes.com/ref/health/healthguide/esn-glaucoma-ess.html

On my mind. . .

2010-12-17T17:33:00.000-08:00

So anyway getting back to every little pain and soreness. . . From the start of my Oct 2006 event, I have had a pain in my mid-back area on the left side. It is about at the base of the rear ribcage area. It has been a tender spot in the years since my right scapula went south (literally). Doctors have assumed (since they know nothing of the bilateral tendencies of NA or the fact that it can involve other plexus sites) that the soreness was simply due to my body trying to rebalance itself against the losses of my right side. What has changed recently is that this tender spot is not just noticeable in movement. I feel a general ache type sensation on the left when I take a deep breath. Glancing at imagery on the web of the diaphragm location, it is at least a possibility that this tender ache type area is at least close to my diaphragm since I see that the diaphragm takes a dip down as it nears the back of the ribs. It may also just be a sore muscle that is aching now because I am taking more deep breaths that usual. Anyway, I guess if it is just a sore muscle my question would be as to why it has not gone away in more than two years. This is just another weird thing I may not ever know for sure.

One other thing that has bugged me for a number of years is my left hip. Back prior to either of my more recent events in 2001 or 2006; I had a sore left hip. In fact it was one reason I chose to get an automatic transmission car in 1999. It was just getting too hard to use a clutch with my left leg getting harder to move with ease. This also has not healed since. There have been times it felt almost better, but recently it has seemed to slip a bit. I have to lift my leg into the car. If I stand too long, it feels like my leg is just being dragged after me. I have a bit of a limp going when walking now. Some have noticed this and asked if I have leg pain. No. There is not real pain most times. It just feels weak.

Are either of these related to HNA? Since they have not healed I have to think they must be related. It bothers me. It makes my temper short. And that bothers me more. But, I do not look sick. That is all that matters to some. And I guess that bothers me even more.

Is Social Security Disability in your future?

2010-12-02T13:32:00.000-08:00

This is something I had not considered at the start of my NA/HNA journey, but after the three attorneys I consulted during my recent Worker’s Comp process were surprised I had not already applied, I thought it worth mentioning.

One thing that you should know is that the social security folks seem to need to know that more than one limb is impacted for them to agree you are disabled by anything. That and you have to demonstrate that this impacts your ability to perform basic tasks that might be associated with paying work or just everyday living. To show this, it is important to document everything that has happened to you so you can demonstrate how this impacts your everyday life. Documentation is the key in this. My documentation amounted to a good inch thick stack of paper reports and doctor notes that go back almost ten years. They also have a list of all of the doctors I have seen and when I saw them. Social Security is free to contact the doctors you provide information for, so it is possible that their complete list of documentation exceeds what I have at this point.

That documentation should refer to impacts you have on more than one limb. The right arm by itself is not enough. The right leg alone is not enough. But if you can show that both arms are impacted or that you also have leg involvement, you will have better chances of your claim not being rejected out of hand. If a doctor anywhere in your past ever made note of a different limb being involved, make sure you have a copy of that in your file. In my case, the original mention of my other arm being involved was important, even though the conclusions this doctor came to ended up being incorrect. In my case, there was another doctor who mentioned that involvement later, so I have two independent doctor notes about other limb involvement. What made this difficult for me was the Workman’s Comp system. My claim only mentioned my right arm. When I brought up the potential that my left arm was involved, they said they could not look at it unless I filed a claim for it. At that point, I was tired of the system and it was only a minor issue to me, I decided not to file a new claim. But it was important enough that two other doctors made note of it. Do not discount those fleeting mentioned items. They could be the difference in being denied or not.

Not an end, just a pause for now

2010-11-22T15:32:00.000-08:00

Well, as any of you know already, pain sucks. But, for a change, it is not my pain. I still seem stable for now as far as that goes. One who is close to me is not so well off at this point. I am in the recently odd position of having to help someone else with fairly basic adult daily living type things, and I am glad I can still do this. And the person I am helping now has a deeper understanding of what I have gone through the last ten years or so. The jury is still out as far as the issues being faced.

As I said, I am stable. What that means is that I am still weak. My shoulder blades still are winged. My right thumb is still basically worthless. But as I may have mentioned, if my right hand was stronger, I would still be unable to lift much with it at this point.

I have to wonder about all of the websites that suggest that NA/PTS only usually impacts the right shoulder. Yes, that would mean that the causal agent can determine right from left, and up from down. Yes, the agent that causes PTS/NA knows that the right side is the right side and the left should be left out of the attack. And while we are at it, it also knows to stay out of the other plexus sites. No need to go there. It is too far away to matter.

Well, in my case at least, the causal agent is just not that smart. Sure the left shoulder is not impacted as obviously as the right, but the weakness is exactly the same right to left. The weakness goes into my lower back and upper legs. There is not anything obvious down there to be winged as the scapulae do, but that does not mean the nerves are not being impacted just the same. Most websites suggest that not only should my damage be restricted to my right shoulder, but also that I should have recovered by now. That does not seem to be happening either.

I have to wonder what my occasional need for super deep breaths might mean. Is my phrenic nerve also compromised already? For the most part I am breathing just fine. But in certain positions I do find I have to take an extra deep breath every so often. I know people who are on oxygen due to PTS. Is that in my future too? Maybe I am good for now. But what about the next attack that is sure to come in the next few years? Just like the killer earthquake that the San Francisco area is bound to have at some point, I am waiting for my next attack.

I try to stay physically strong, but how do you exercise muscle that has no nerves to fire it? In my brief returns of strength, the muscle still works, and seems to be able to get stronger as long as it works. But then, it disappears again and I return to being weak. I have always been thin. I guess it is time to give up on ever looking any different.

Good bye for now. I hope you all are doing better than I am, and maybe you will be able to recover as the websites suggest you will, at least on average. I guess I have never really been average. No reason to change that now.

I will be back at some point.

Be well. . .

Strength gone again

2010-09-22T15:16:00.000-07:00

Just now I am back to around 5 push ups.

I am curious if anyone else with PTS by whatever name you know it- has this sort of fluctuation in strength. My doctors will not discuss it, which is just as well since they do not understand anything about it.

Timolol and strength update

2010-09-06T17:31:00.000-07:00

Well, it has been a bit more than a week since I have stopped the beta blocker eye drops, aka Timolol. The theory is that they may have either caused or exacerbated my tremor and muscle weakness. The timing suggests at least a probable cause enough to be suspicious.

Initially, I felt that my fine motor control was much improved, and the few twitches I have had ongoing appeared to have stopped.

But then I had to go and spoil it all by attempting to do a bit of yard work today.

Trying to lift things is still a problem. But, overall my lower back and upper legs felt much stronger than they have in previous similar outside work. My hands, particularly on the left, still tremor after any exertion. At one point I had my left hand resting on a board trying to hold it steady, and it was shaking quite a lot. I just tried to work through it.

During the work period, I had a few instances of just not knowing how to proceed. I am not good at building things anyway, but this was a fairly simple thing to attempt. I am not sure why things like this seem to happen. I guess there was a symptom for confusion listed in the Timolol. And I also know that can happen for magnesium deficiency. It has got to be the Timolol unless there is still something else at work here other than NA and its associated weirdness.

I got to a point, I just had to quit though. It was not quite done, but I was at a point that going on would have been prone to my making mistakes, and some of those could be dangerous when weakness takes over while using power tools. My shoulders were done. I could feel my scapulas trying to hold my shoulders stable- and it hurt a bit. Now I have trouble reaching my arms out away from my body. I may have over done things.

But I also just did 30 push-ups with only minor shaking towards the end.

Another blunder- What What else is new? Tremor and many other symptoms may be side effect of eye medication

2010-08-27T15:51:00.000-07:00

Some of you may remember from earlier posts that my latest official bout of NA hit in the end of 2006. By the early part of 2007, I was having the start of eye pressure increases. After a few tests, I was given a prescription for Timolol. In the period after this, I noticed that I had tremor and fatigue that seemed to go beyond anything seen discussed for people who are recovereing from an attack of NA.

When I went to a Neurologist to see what the tremor was caused by, I told him that I was taking Timolol to control the high eye pressure. He prescribed Propranolol for the tremor. I asked him if it was a problem if I was already taking Timolol, since I knew they were both beta blockers. I knew to ask- He told me there was no problem.

Info on Timolol interactions from http://www.medicinenet.com/timolol_ophthalmic_solution/article.htm

“DRUG INTERACTIONS: Combined use of oral beta- adrenergic blocking agents, for example, propranolol (Inderal), atenolol (Tenormin), metoprolol (Lopressor) or carvedilol(Coreg) with ophthalmic timolol can result in additive effects. Thus, patients may experience excessively low blood pressure or reductions in heart rate.”

Note, it says “can result in additive effects” if Timolol is used with Propranolol. Who knew? Further down it talks about side effects of Timolol.

“SIDE EFFECTS: Ophthalmic timolol can cause irritation to the eye which may manifest as pain or dryness in some people. Rarely, timolol eye drops can result in side effects that are seen with other oral beta adrenergic blockers. For example, persons can experience fatigue, insomnia, nausea, slow heart rate, low blood pressure, cold extremities, and shortness of breath or wheezing.”

From another site http://www.drugs.com/sfx/timolol-side-effects.html

“All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Timolol Gel Eye Drops:

Blurred vision; dizziness; dry eyes; feeling that something is in your eye; headache; increased tear production; minor burning, itching, or stinging of the eye; nausea.

Seek medical attention right away if any of these SEVERE side effects occur when using Timolol Gel Eye Drops:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); chest pain or discomfort; confusion; eye irritation, swelling, pain, or discharge; eyelid pain, redness, scaling, drooping, or swelling; fainting; pain, numbness, weakness, or tingling of an arm or leg; severe or persistent headache or dizziness; shortness of breath; slow or irregular heartbeat; swelling of the hands, ankles, or feet; vision changes.”

It goes on to add among others, vertigo and tinnitus, both of which I have had since this all started. I have also had quite a few of the others at various times, always blaming NA for the ones not directly related to eyes. My new Eye Doctor asked me if I had any tremor, and when I said yes, he asked about exercise intolerance and depression. Here I thought all of my troubles were either from NA or that maybe other doctors had missed something obvious, and a lot of this could be due to my eye medication. It is no doubt a good thing that I stopped the Propranolol on my own. It may be my tremor was caused by its cousin Timolol.

Needless to say, he took me off of Timolol. If I truly need eye medication in the future, there are others without the mess of side effects.

Another cycle of improving strength?

2010-08-26T08:20:00.000-07:00

Well, maybe I am about to start a new phase of improving strength again. I am not even going to hope it will last. More than likely it will not. The last few times I tried to do any push ups I was only able to do 3-4. Just now I was able to do 12 before having to drop to my knees. And now the next day, I have done 15. We shall see. I do not want to push myself to fast.

Over all the weakness is still worse now than it was a few years ago. I have sagging skin around my right bicep at the elbow joint. It does not look like how I remember my arm. I doubt I will be able to strengthen it enough to fill it out again. When I look at my right arm in a mirror, I can fully see the tremor of the muscles even without applying any tension.

Weakness, and tremor, and shaking. . .

2010-08-16T15:50:00.000-07:00

From what I can see out on-line, and what I see in reports for my blog site, shaking and tremor of various kinds does happen with those of us attempting physical exercise while recovering from PTS or NA attacks. This generally is not covered specifically in sites I have seen, but there are enough general searches by my blog readers to suggest it is somewhat of a concern, and I have decided that it makes sense it would be a problem.

With PTS, you have something attacking the major nerve plexus sites in the body. If it is a big enough attack, you get the most severe symptoms everyone knows about. But, PTS/NA is not specific in the nerves it impacts. How would it determine only to attack the nerves that would lead to a winging scapula? The other nerves of the plexus sites must also be impacted, but maybe just not at the same level. It stands to reason, in my thinking anyway, that there can be ongoing weakness of the areas impacted, just as there is to the most obvious impacted areas. This weakness is caused by damage to nerves that serve other muscles through the body. If the nerves can’t fire effectively as they normally would, you have incomplete contraction of the muscle and this causes fatiguing of that muscle, leading to shaking of the larger muscles and tremor of the more fine controlling muscles of the hands and fingers.

For me, I have a recurring pattern of weakness followed by improving strength for short periods. But, the regained strength does not last. That may be normal also, depending on the way PTS is triggered for the individual. During the strong periods, I have normal strength and no tremor or shaking. As the strength wanes, the tremor and shaking returns and increases again. During this time, effective exercise is severely limited. It is hard to exercise when the muscles stop working. I may have said parts of this before, but you have to attempt to exercise once in a while to keep up on the cycles. During a strong period, exercise works and I think it is good to do it then to try to regain all you can in what may be a very short burst of normal or at least close to normal strength.

A better way for Scapular Pushups

2010-08-13T12:51:00.000-07:00

My Physical Therapist originally showed me how to do scapular pushups to help strengthen and stabilize my shoulders. I never felt that it did much the way I was shown. Here is a bit more advanced way to try if you want.

http://www.youtube.com/watch?v=ALzFr2GT-Is

Updated Magnesium withdrawal update

2010-07-19T09:08:00.000-07:00

First, I had noticed a bit of tension in my arms and shoulders, which seemed to add to my jittery nature a bit. Then I realized my temper had shorthand down a bit. I should warn those around me prior to experimentation with changing magnesium dosage or stopping it completely. Then it was shortness of breath.

Breathing is important after all, and if you already suffer from NA, you are sensitive (or I am anyway) to any breathing changes. Why? If you do not already know, NA can impact the cervical plexus in some instances. The cervical plexus is the place where the phrenic nerves originate and then travel down to the diaphragm. If your phrenic nerves are involved in a NA attack, you can have loss of some diaphragm function. Now, it could be that I already have some losses, and taking the magnesium away just made my function worse than normal. Or it could be a coincidence that for the few days I was off magnesium, I had shortness of breath to the point it disrupted my sleep. The more this goes on, the less I believe in coincidences.

So, I started the magnesium again, and my breathing was back to normal. Well, I still had to take a pronounced deep breath once in a while, but with the magnesium, I could do this. Without it, I was gasping at times.

Magnesium deprivation experiment

2010-07-16T09:25:00.001-07:00

Since my strength has dropped off again to similar levels as a few years ago when I could only do a few pushups at a time, I decided to stop the magnesium supplements just to see what impact if any, it is really having on my overall condition.

This is the start of the second day without the supplements. I really do feel a difference at least as far as tremor goes. I notice it in both arms and both hands, although the left side seems to manifest this a bit more than in the right side. I feel as if the base level of static tension has increased in both arms. Movement in general is impacted. Although I am not sure anyone else can see this yet, I feel a bit more wobbly even walking. I have not noticed any increase in the random twitches I had earlier on. The muscle shaking of before has also returned, but that had started when my strength dropped off- I had noticed this when trying to do pushups recently.

Conclusions so far- My strength return of before must not really have had anything to do with magnesium since it dropped off prior to my stopping the magnesium. It must have just been a coincidence that my strength returned at a time I had started taking the supplement. Tremor definitely is related to magnesium intake for me since this has increased noticeably. It is too soon to say how the twitches will be impacted.

Parsonage Turner Syndrome Revealing Lyme disease

2010-07-16T08:53:00.001-07:00

http://neurotalk.psychcentral.com/thread72131.html

Maybe my friend who suggested I should be tested for Lyme disease knows more than I thought she did about this topic.

The above link is one of many links to a paper (Wendling D, Sevrin P, Bouchaud-Chabot A, Chabroux A, Toussirot E, Bardin T, Michel F. -Service de Rhumatologie, CHU Jean Minjoz, et EA 3186 -Agents Pathogènes et Inflammation- Université de Franche-Comté, Boulevard Fleming, 25030 Besançon, France) suggesting that NA, AKA, Parsonage Turner Syndrome, has been linked to Lyme disease. The abstract suggests that four patients, who were reported to have NA, were later found to have contracted Lyme disease. One had said they knew they had been bitten by a tick, and all four showed positive for Lyme disease. It concludes that tests for Lyme disease should be performed in all patients who have Parsonage Turner Syndrome.

Back to five

2010-07-07T15:09:00.000-07:00

Now, all of a sudden I am at around 5 push-ups again. I don’t get it. Evidently. . .

So, what is this now? I have to wonder if there is something else going on other than NA. This fluctuation of strength is just too odd to fit NA.

Anyone have any ideas? Do any of you with NA or HNA have similar fluctuation of overall strength in areas not impacted directly by NA? I mean, I would not expect my scapula or hand to be strong now. But other areas I think should stay about what they are considering I have been trying to keep up on other strength.

Neuralgic Amyotrophy - Where I am now

2010-05-26T14:12:00.000-07:00

Just a short update- I am about as stable as I guess I am going to get for now.

Whether the weakness I on occasion experience is related to PTS/NA or not, magnesium (chelated) does help.

Whether the twitches and tremor I feel is related to PTS or not, magnesium helps keep that bearable also with no further drugs (i.e. Propranolol).

My weakness is stable at this point. I dropped in my pushups count from the 30’s to around 20 at this point. More magnesium may help get more strength, but I have to limit it at some point. I am not made of money and if I up it too much, I am sure the chelated effect will be overcome and I will cause more digestive problems than it is worth. My shoulders are too weak to pick up anything heavy. Of course, my lower back being as it is now does not help. Oh, and my upper thighs- it is all related to being able to bend and lift. . .

Doctors I know do not want to pursue my case. Hell, Doctors I do not know do not want to pursue it. I recently contacted a doctor here who I had been told was the only doctor in my area to test for and treat Lyme disease. I tried to get on with him as a new patient, and was told he was not interested in taking any patients for Lyme disease. I never told them I had it- just mentioned I had some similar symptoms but did not know what I had. I may have said this before, but I think there are too many doctors who just want to keep it all simple. Insurance companies do not want to take on “unknowns”, and doctors are really no different. I think that is one reason my most recent doctor visits ended as they did. Whoops- I did not find anything concrete that I can either throw pills at or operate on and cut out of you. That being the case, insurance will not pay for a series of tests that cannot be justified. Therefore, I will give you a medication to control the obvious physical symptom without worrying it is caused by anything more severe- nice and neat. It looks good in your chart to be neat. And your insurance will pay me for it.

I guess in order to find out more about the causes of these other possibly unrelated symptoms (unrelated to PTS?) I will have to be in worse shape. I guess in the TV show House, you have to be almost killed by incorrect treatments to find the correct diagnosis. In most real life situations, you just have to keep records of how symptoms progressed over time so when you are near death’s door you can tell the doctors who try to treat you how this all started. And they will no doubt say, “oh, if we had only caught that sooner. . . “

Lyme disease and magnesium deficiency

2010-05-18T17:04:00.000-07:00

Long ago, a friend suggested that I may have been exposed to Lyme disease, and maybe that was why I had the symptoms I have. Well, I went to a specialist and filled out their screening tests information, and they did not find any suggestion of Lyme disease in my responses. But, there is a bit of evidence to support a link between Lyme disease and magnesium deficiency. I Googled “Lyme disease magnesium” and came up with this site among many others.

http://www.lymebook.com/lyme-disease-diet-and-supplements-vitamin-a-b-c-magnesium

From the site related to magnesium and Lyme disease:

” Magnesium: Both Lyme and Bartonella significantly deplete the body’s supply of magnesium. Magnesium is one of the most important mineral nutrients necessary for good health, and also one of the minerals that Americans in general are most commonly deficient in. The recommended daily intake of magnesium for healthy people is 400 mg per day, but the sad reality is that the average American gets about half that amount per day. The best nutritional sources include green foods, especially collards and chard (magnesium is to chlorophyll what iron is to hemoglobin), orange-colored foods, nuts, chocolate, figs, apricots, coconut, bran, oats, beans, and legumes.

Most widely known for its ability to support the health of the bones, heart, skeletal muscles, and teeth, magnesium also plays essential roles in the maintenance and repair of all body cells, energy production, hormone regulation, nerve transmission, and the metabolism of proteins and nucleic acids. It also helps to reverse muscular tension and is involved in the functioning of literally hundreds of the body’s enzymatic reactions. A lack of magnesium can also contribute to immune system dysfunction, depression, fatigue, high blood pressure, high cholesterol, gastrointestinal problems, irregular heartbeat, memory problems, mood swings, muscle spasms and twitching, and motor skill problems.

Many chronic symptoms of Lyme/TBDs are related to magnesium deficiency, and the correction of that deficiency can be very effective in relieving those symptoms. For that reason, I routinely test nearly all patients with chronic Lyme symptoms for magnesium deficiency. The problem with blood testing is that the magnesium blood test should be done on the red bloods cells and not the serum. This is because magnesium exists primarily inside of cells (intracellular, as in red blood cells), and deficiency will not be detected in fluid outside of the cells (extracellular, as in serum or plasma) until a very profound deficiency exists. If you can afford it, the best, and also most expensive, test is the blood “ionized” magnesium (performed by most large commercial labs). “

When does a little magnesium lead to more?

2010-05-17T13:42:00.000-07:00

I had been trying to use less magnesium, thinking maybe I had been taking too much of the chelated form. And I had been slowly getting worse. My pushup count was dropping to around 10 or fewer. My back was very shaky again.

Today, I doubled the dosage of the chelated magnesium, and started to feel a bit better fairly quickly. So, maybe my assumptions about increased absorption of chelated magnesium should not have lead to a conclusion that a lesser dose was needed. If I take two, I feel better and my pushup count is back up to 20.

You don’t look sick. . .

2010-05-17T13:29:00.000-07:00

I have mentioned this before. Whatever the cause of your own PTS, or NA, or HNA, or whatever of the many names this goes by you choose to use, you may not have any outward appearance that you have anything abnormal going on. This can be a problem going to see doctors because they may not really believe you when you tell them how you feel. At least they should take the time to look at you and see that there are actual physical things related to PTS that can be seen that are not right and indications of an overall problem.

Your friends and associates may be harder to convince or deal with. And, maybe you do not want them to think of you as having issues, so you try not to show them how this impacts you. You try to do things that you know you have problems with. Sometimes you fail, and they do see just what the toll of PTS is on you both physically and emotionally. Recently one such occasions lead to a meltdown for me, and a “I had no idea” from a person very close to me who I had thought understood my limitations.

She had told me long ago that I hide the physical limitations of this syndrome very well and maybe that is one reason doctors tend to think I am better off than I am. I am not trying to hide anything. I guess I take it for granted though that someone close to me can always tell when I am pushing beyond what I should be trying to do.

The truth is that PTS/NA is never far from my thoughts in everyday life. Everything I do every day is a reminder of what I have lost, or have had to make adaptations to in an attempt to appear “not sick”. It is true this may not life threatening illness, but it still is not easy to deal with at times. It can be rough on you when you are not able to do everyday things that others take for granted. This can be as simple as not being able to write more than a few words legibly to doing simple chores around the house. Because you can do these things, others can forget you have had to adapt yourself to be able to do them.

If you know someone who is working through this, be understanding.

Comparison of NA vs. HNA

2010-05-13T16:41:00.000-07:00

Most websites on PTS limit the involvement to that of the shoulder girdle, and usually suggest there is only one attack. The differences in HNA and NA attack sites are discussed by Nens van Alfen, MD- here:

http://brain.oxfordjournals.org/cgi/content/abstract/129/2/438

“HNA patients had an earlier onset (28.4 versus 41.3 years), more attacks (mean 3.5 versus 1.5) and more frequent involvement of nerves outside the brachial plexus (55.8 versus 17.3%) than INA patients, and a more severe maximum paresis, with a subsequent poorer functional outcome.”

I have mentioned earlier on all of the potential plexus sites which can be impacted by HNA, but here is a distribution found on Gene Reviews-

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=hna

“While the shoulder and arm are primarily affected by attacks in HNA, other sites that may also be involved in an attack include the following:
• Lumbosacral plexus in ~33% of attacks
• Phrenic nerve palsy in 14% of attacks; may cause orthopnea, respiratory distress and sleep disturbance
• Recurrent laryngeal nerve in 3% of attacks; may cause vocal cord paresis resulting in hoarseness and hypophonia
• Facial nerve or other cranial nerves (rarely)”

While there is a genetic test to determine whether you have HNA or NA, this would seem to suggest that if you have had more than one occurrence of NA, or if you have had involvement of other plexus sites, at least statistically you may have more chance of having Hereditary Neuralgic Amyotrophy.

When is a little magnesium too much magnesium?

2010-05-04T11:34:00.000-07:00

Well, I am confused about this myself.

I had started off with regular magnesium and it had helped me keep the tremor and shaking under control quite a bit initially. Then it seemed like I hit a time where it was not helping. I switched to chelated magnesium and that seemed to help again. It may be that I did not really need to go to the chelated form after all. Maybe my body was just trying to tell me it needed a rest from the magnesium. I say this because a few days ago, I again started to shake and have tremors even while taking the magnesium. What the? This time I did the one thing I had not tried the first time. I stopped taking magnesium.

The first day without the magnesium supplement, the shakes diminished. And the bit of tremor I had begun to feel also went away. And the twitching (mainly felt in my fingers this time) also diminished. It has now been three days and the initial lack of symptoms has been maintained. And my strength is about the same- meaning good for this weird period of my life, but not what it was when I was way younger. Why is this? Why is the addition of magnesium a good thing and then it becomes a bad thing? This is when it would be nice to be my own doctor so I could explain the intricacies of magnesium absorption and what needs to happen to keep it balanced.

Maybe it all was a coincidence and magnesium never did help me at all. Maybe I got better on my own and it just happened that I had started taking magnesium at that time. And maybe it was coincidental that low magnesium could have accounted for a majority of the symptoms I had been having. That does seem like a bit of a stretch.

Maybe the level of magnesium in my normal daily food has increased, and the supplemental magnesium just pushed me over the edge to the point it was becoming a detriment. Too much magnesium can also cause weakness and other symptoms that I was trying to get rid of. It is complicated and I guess that is why doctors get the big bucks. Not that my doctors ever suggested magnesium could help or hurt. At the dosage I was taking, it should not have been a problem.

I go back to Myasthenia Gravis (MG). One thing that comes up on websites dealing with MG is that if you have Myasthenia Gravis you should not take magnesium supplements because the extra magnesium can make you weaker than you are already. I know that MG tends to cycle as other immune diseases can, so it may be that when MG is in its full swing, you may be more sensitive to the impact of magnesium. And when the MG has abated a bit, magnesium could help in the lessening of other symptoms.

What do I know?

Added 05/17/2010

I had been trying to use less magnesium, thinking maybe I had been taking too much of the chelated form. And I had been slowly getting worse. My pushup count was dropping to around 10 or fewer. My back was very shaky again.

Today, I doubled the dosage of the chelated magnesium, and started to feel a bit better fairly quickly. So, maybe my assumptions about increased absorption of chelated magnesium should not have lead to a conclusion that a lesser dose was needed. If I take two, I feel better and my pushup count is back up to 20.

My left arm- I feel like I have already seen this movie

2010-04-16T16:37:00.001-07:00

All along, I have thought NA/HNA- what is it anyway? Was just impacting my right arm, and most sites agree it impacts mainly the right arm and shoulders. But I always knew my left shoulder was just not as bad. Well, it seems to be changing of late. I had mentioned the ache I had a while back. That went away. But in its place I have been feeling tenderness in the biceps tendon.

This is a weed whacker issue also since I used it just the other day again. During use, and for a couple hours later it was OK. Then the tendon started to become inflamed and my arm was shaking during any use. And I now was having trouble lifting my arm at all. It started to feel all too familiar. And this was not so much how my arm and shoulder felt preceding my winging right scapula, but it was a similar sensation as I had preceding my thumb and index finger problems. And the ache I had also involved my thumb. This makes me wonder. And it makes me feel like I have to be more careful or I will end up with two hands that are not much good.

More on Chelated Magnesium

2010-04-15T08:34:00.000-07:00

Here is just a bit more about magnesium and the differences between chelated and regular.

For the regular non-chelated form, I was taking two capsules a day to get to the 600 mg total dosage they recommend. If I take that amount and get a typical absorption rate of 10% for the non-chelated magnesium, I end up with a total absorption of 60 mg and a wasted amount of 540 mg left to cause havoc with my lower digestive tract.

For the chelated form I now have, it has a total of 150 mg of elemental magnesium per capsule. Right off you might think it is a bad idea since you would have to take four to get to 600 mg. But wait. If your typical absorption rate is 40% for the chelated form, you can get by with taking only one capsule to get to that 60 mg dosage. That leaves you with only 90 mg of wasted magnesium in your digestive system. It is still wasted, but it is so much less than the amount wasted with the non-chelated forms.

And there is another difference. With the non-chelated form I always had just a slight residual of symptoms at times. The tremor initially was gone completely, but the twitches were always there just in the background. If I could have done so, I would have tried just a bit more magnesium. But I was already at the recommended dosage and I did not want to push it any higher for obvious reasons. With the chelated form, I am just taking the one capsule a day and it is totally controlling the twitches. And that slide backwards I had mentioned just previous to this entry is reversed. So maybe the absorption is a bit better than 40% or the absorption of my non-chelated form was a bit less than the 10% rate I was assuming.

Chelated is better. Don’t waste your time on anything less than that.

Regular vs. chelated Magnesium

2010-04-13T16:48:00.000-07:00

Recently as mentioned it seems I had hit a plateau as far as how magnesium was helping me long term and that maybe I had actually started a slow decline off of that previous level. And as ever I have done in the past, I started wondering why. It occurred to me that maybe it was the type of magnesium I was taking. I was taking just a run of the mill magnesium at around 600 mg daily.

This is beneficial in the short term since I really was down on the magnesium input to my system. But, the type of magnesium at that dosage was also making my digestive system have problems that may in fact have been stopping absorption of other foods, and the magnesium I needed. Enter chelated magnesium.

It turns out that no matter how much my natural food store employees were trying to tell me I had already had chelated magnesium, they were wrong. I just had regular unadulterated elemental magnesium which has an absorption rate of no better than 4% while a chelated form can be absorbed at close to 40%. After the switch, it already seems that I feel better again. In order to be chelated, it has to have it on the label. And even though chelated forms appear to be lower in total dosage, you get more of it.

From http://www.restlesslegsyndromecure.com/cause.html which talks about restless leg syndrome. . .

“Magnesium causes relaxation of the muscles in the entire body including the legs. A lack of Magnesium causes the muscles of the legs to tense up. So the solution is to take Magnesium. Make sure to take a Magnesium that is easily absorbed. Take Magnesium Glycinate or Magnesium that is chelated (the absorption rate is 40%). Do NOT take Magnesium Oxide (the absorption rate is only 4%). Take 400 mg/day - 1000 mg/day of Magnesium being careful to spread it out over the entire day. The Magnesium may cause loose stools since it relaxes the muscles of the intestine. So if you get loose stools just cut back on the dose of Magnesium. The Magnesium will relax the muscles of the leg and reduces the urge to move your legs. Typically, health food stores have a high quality Magnesium. The common run of the mill department store magnesium is magnesium oxide and will NOT be absorbed.”

The other shoulder

2010-04-12T11:56:00.000-07:00

Off and on recently I have had things going on with what had been my un-impacted left shoulder. I say un-impacted even though my left scapula does show sign of slight winging. What has been happening is that I feel a dull ache from my scapula that feels like it is traveling down my arm to my left thumb. During these times, my arm is about useless even though the pain is not what I would call bad in any way. At least it is not bad compared to what I know it could be.

So, I am not sure what it means, if anything. I have had no pain recently in the left side of my neck. But, I do continue to have left sided headaches periodically, as I have had since this all started in 2006. I know my doctors would just say it is due to overuse. But, what should I do about that?

On Facebook- Parsonage-Turner Syndrome Support Group

2010-03-31T14:08:00.000-07:00

Just wanted to let you know- Maybe I was the last to know- that there is a support page for PTS on Facebook. Once you join Facebook, search for "Parsonage-Turner Syndrome Support Group". Good info, and more people out there to share stories with.

Yard work and no shaking

2010-03-11T12:50:00.000-08:00

I have run our weed whacker for the first time this season, and I have to say that I experienced no tremor or muscle shaking at any time during or after the usual circuit of the yard. I even kept going and wound up a 100 foot extension cord wrapping it over and around my left arm, then mowed the lawns front and back- and then cut up some branches to get rid of.

Of course, I did manage to whack my left ankle. this is not a nylon line weed whacker. No. I had to go and replace that with two plastic blades. I always wondered what would happen if I miscalculated how close my leg was to the working end of this contraption. Now I know. Nothing major damage-wise, but I do not recommend it.

So- what tremor? Just add a bit of magnesium, and it seems to be gone- for me at least.

Magnesium Deficiency and H1N1 shots related to Parsonage Turner Syndrome?

2010-03-03T13:22:00.000-08:00

I notice in reports that some have searched to find my blog with these queries. Do not worry, that is all I can see about the site. I do not see any information about any specific users. . .

Anyway, about the queries-

Flu shots a cause for PTS?

I have never seen any evidence specifically linking any particular injection to Parsonage Turner Syndrome. But, I have seen that Brachial Plexus Neuritis (one name PTS can go by) has at least been linked to certain injections, among them influenza injections. Sites I have seen do not say injections are a direct cause, but only that in certain cases, the only thing that had happened recently to a sufferer is that they listed having had a flu shot. See this site for examples of causes- if you have not already found it. http://emedicine.medscape.com/article/315811-overview

Magnesium Deficiency linked to PTS?

Magnesium Deficiency is a possible culprit in many diseases as I have alluded to in the blog previously. It does cause overall weakness, tremors and twitching and a general feeling of malaise- like you are just winding down to minimal function. In my opinion, if you also have PTS or NA, or even HNA, the weakness associated with PTS can be additive if you have magnesium deficiency on top of it. It was for me at least. But, as a cause, I do not think magnesium deficiency would be a direct cause for PTS in any of its other names. PTS causes winging scapula and other distinct muscular losses, and may cause a general weakness of the impacted limbs. But, low magnesium would produce weakness all over the body by comparison. Also, once you correct the magnesium deficiency, overall strength improves quickly, along with a cessation of other related symptoms like twitches and tremors. Even at that though, my scapula is still winged, and my right thumb is still partially paralyzed.

Capsules vs. Tablets for magnesium. . . It does make a difference

2010-02-19T17:43:00.000-08:00

It seems that the type of magnesium supplement is important as far as how effective it will be. At least this is true for me. I had started out and had been successful using capsules. That is the ones that are a clear material that are packed with powdered form of the ingredients. A couple of days ago, I tried a tablet (hard packed) that also included calcium and vitamin D. After a day of that, I was starting to slide a bit back into tremor and shakiness. I was also getting a bit tense and feeling a bit over taxed again. I switched back to the original capsule form and I have improved again. My guess is that the capsule format is quicker to load into your system because the capsule material dissolves quicker than the tablet. I suspect the tablet was not dissolving until it had passed beyond. . .

Parsonage Turner Weakness-Strength update

2010-02-17T14:08:00.000-08:00

Just a quick update about exercises I have been doing-

The last few days of pushups, I have felt almost like I could go beyond 25. Today, I acted on that and pushed it to 30. I have got to think that I have never done 30 at one time before in my life. I know I had only rarely done 25 even in my earlier years(upper body strength has never been easy for me). And, if anyone is concerned I am only doing pushups I am back to 20 sit-ups and walking or doing stationary bike stuff and other daily exercises for other areas.

Prior to magnesium being added to my daily vitamins I had stamina issues walking around the block or biking, and I could do only 8 sit-ups (shaky ones at that). And 20 minutes or so after trying those 8 sit-ups, I could not do even one more. The first time I tried to do sit-ups after adding magnesium, I did 20 and could do 10 more after resting a few minutes. I tell you, this stuff is helping me get back into the shape I need to be in to get my NA ravaged shoulders stabilized.

We know that NA/HNA does cause some weakness, and that this can linger for a couple of years at least. In my case it lingered for around 4 years before I realized I was losing too much muscle mass. There may be things going on here that I do not know about, but I have become a fan of this one supplement. I take a few daily supplements, but magnesium is the only one that I can tell a difference in how I feel if I miss a dose. I would suggest if anyone has more weakness than they think can be attributed to NA/HNA, to try a good magnesium supplement.

How much is too much exercise?

2010-02-09T16:32:00.000-08:00

Hey, that is not the real question at all. The question is what happened to the magnesium that I used to get in my diet without the supplements? I have been doing at least 25 pushups daily, and usually with other upper body exercises to try to regain the arm strength I had a few years ago and had lost. I would almost bet money that if I stopped the magnesium supplements, I would go back to being a shaking mess. I am not going to do it. First, no one would pay me anything when I won the bet. And I feel so much better I do not want to stop it just to prove what I already know.

How does this relate to NA? Well, while I had the severe weakness, I could not effectively exercise. Thinking weakness was related to NA made me think the NA is more involved than any website suggests- or more involved than any doctors I had seen who knew NA at all- which is rare. I was convinced the NA was worse than anyone knew, or that I had some other disease that could be life threatening. Maybe that later thing is still true- but that could happen at any time. Wasting away getting weaker was just the start of what could have been the start down the proverbial slippery slope. The weaker I got, the sicker I thought I must be. The sicker I thought I was, the less I tried to do, and the weaker I became. This is all why I jumped into a round of new doctor visits towards the end of last year. Someone had to see what was happening, or I doubted I would be around much longer. Or if I was here, my quality of life would be close to zero.

That sounds pretty extreme, but it was feeling like I was in a pretty rapid slide towards the end of last year. My tremor was worsening. My shakes were worse. I felt weaker doing everyday things. When I felt good exercising one day, I would feel like crap the next day and not be able to do anything. I am convinced that if I had not found that page suggesting magnesium supplements could increase muscle response, I would be in pretty bad shape at this point.

And I owe it all to my doctors. No, actually they did not cure me of anything. But, they were steadfast in suggesting that there really was nothing wrong with me. They proved it. It would have been nice if they could have been better equipped to be able to suggest other things that may have helped, but they are pretty busy with other people who may be sicker than I am. I just needed to slide a bit deeper and maybe they would have taken me more seriously. It is like on House. . . You may want to have a doctor who would take all that time with you and finally cure you in 60 minutes on Mondays at 9 PM. But, I have also noticed that he rarely is right the first few times, and he pretty much has to kill a patient at times to discover what really is wrong with them.

My advice to anyone who is up against a wall with doctors is to not give up. And if the doctors have given up on you, keep looking on your own. There is a wealth of information out here. It might take you what feels like forever to wade through some of it- but the answer you need may be on that next page you look at. But use caution too. There is also a lot of crap out there that is useless. And if you find an answer, your doctor may feel threatened if you suggest it was found on the internet. Get better at using search engines. Refine your searches and look at as many links as you can. If you find something promising, refine your search to include that. You might find your own key that will unlock your answer- or give you something else to mention to your doctor the next time he can spare ten minutes of an hour appointment to talk to you. I now have two things to ask about next time. First, why does magnesium make me better? And is it possible the lack of magnesium in my diet could explain why I got glaucoma? It is funny that the last time I saw my regular doctor; he even suggested to me that it all might have to do with something in my diet. It is funny because if I am right, it turned out to be a lack of something in my diet.

Link to Glaucoma found?

2010-02-04T14:13:00.000-08:00

Well, this is not a direct link from HNA/NA to glaucoma, but there does seem to be at least an indirect link between low magnesium and glaucoma. If one aspect of low magnesium leads to blocking of glutamate receptors, which are excitatory neurotransmitters of the central nervous system. It appears that this can be linked to many diseases. The list includes ALS, Huntington’s, MS, Parkinson’s and others. (see http://en.wikipedia.org/wiki/Glutamate_receptor)

On the list is glaucoma, a disease I know I now have, and those others I could have but would rather think I do not. I used to think it was a coincidence that I was diagnosed with glaucoma at around the same time my muscles got so weak. I thought it was from HNA/NA- but now I think this is also from low magnesium- or whatever caused that.

It has to be the Magnesium- but why?

2010-02-03T10:14:00.000-08:00

I continue to take magnesium supplements at 600 mg a day, and I am improving as far as my strength goes. And I have had no return of the tremor that had impacted me for the last few years. I have not had any anti-tremor medication. Just now I finished 25 pushups. I did 25 yesterday, and 20 the day before that. All in all my muscle function feels about normal. I have no shakes doing exertion and no lasting muscle fatigue when finished. I have to wonder why this happened. No doctor is interested in pursuing it, and I am about out of insurance to pay anyone. Is this related to NA or HNA?

I know that NA/HNA causes weakness, but is this the type of weakness it causes? If so, why does magnesium help? Maybe something I regularly eat is lacking magnesium it used to have, or something else I eat causes that magnesium to go away somehow? It can’t just be an absorption issue, or the pill supplement would not help either. It has to be a lack of magnesium in my diet.

Magnesium Deficiency re-visited

2010-01-22T17:01:00.000-08:00

So- I have been thinking about my tremors and twitches and weakness, etc. especially since my tremors and twitches had gone away. I had failed to mention that during the time they went away, I had increased my intake of Magnesium. A few days ago, my magnesium supplement ran out. This morning I noticed a return of the twitches, and I felt wrong inside. Now I see that it may be that the magnesium was helping. Here is a bit from the web.

Magnesium deficiency from Wikipedia See http://en.wikipedia.org/wiki/Hypomagnesemia Miss-spellings are from Wikipedia.
Clinical features

“Deficiency of magnesium causes weakness, muscle cramps, cardiac arrhythmia, increased irritability of the nervous system with tremors, athetosis, jerking, nystagmus and an extensorplantar reflex. In addition, there may be confusion, disorientation, hallucinations, depression, epileptic fits, hypertension, tachycardia and tetany.”

From that list, I have my share of nystigmus, weakness, tremors, jerking- which I am taking to mean twitches, but who knows for sure? Depression also fits if sleep is disrupted as in my case- I had thought the twitches disrupted my sleep, but maybe it is just a coincidence that I did not sleep well last night, and noticed a return of the twitches. This page it also talks about magnesium deficiency blocking release of acetylcholine, which is the neurotransmitter that is also associated with Myasthenia Gravis.

“The neurological effects are:
 reducing electrical excitation
 blocking release of acetylcholine
 blocking N-methyl-D-aspartate (NMDA) glutamate receptors, an excitatory neurotransmitter of the central nervous system.

Well, I went right down to the store and got more Magnesium supplements. I feel calmer already.

And about those tremors- What tremors? ? ? ?

2010-01-14T11:43:00.000-08:00

Man, I sound bitter in my last post. .. .

Well,if any of you have gone through having something that is a bit out of the ordinary as far as a diagnosis goes, you can no doubt understand why. I do not want to be that bitter. If I go back to my doctor again, it will be to do only the simple things any doctor has experience with. He is not an ‘out of the box’ type thinker, and that is what is required here. Or, maybe he would be a better doctor if he had more time. Well, I gotta scoot.

Remember I was recently diagnosed with essential tremors? Of course, I had known I had them but no one would ever take the time to ask me to show them what I did that made me notice them. At least my regular doctor was good for that much. The thing is, they seem to be gone.

Essential tremors do not just go away, or do they? I can’t find any site that suggests they go away without any reason anyway, and most just say it is something you have to live with. I know, I see the ads pop up on this site too, and some of them are about essential tremor cure. I do not want to dissuade anyone from clicking on an ad here but also do not want to seem that I endorse any that show here. I have the ads to pop in for key words in my blog- so they are what they are. My tremors went away totally, with no changes to anything I was doing, or not doing.

I woke up a few days ago without the normal felling of twitches and tremors that still had been there in the mornings when the medication was its weakest. I decided to try a day without the medication- and then another, and another. My hands are steady. I am not twitching. I do not get it. Maybe this was not really essential tremor, but something else that just mimics the symptoms? Who knows? I will ask the next doctor I see whenever that happens.

I am done

2010-01-06T08:39:00.000-08:00

At least, as far as my personal Doctor goes, I have had it. He has shown before that he is not quite up on NA, and evidently he is not able to get into it enough to deal with a patient who has it. My problems are all due to lack of exercise. . .

But of course it is never as simple as that. My lack of exercise, even though I have exercised consistently all through this time, is the reason I am weak. And my exercising is the reason I am weak. There is no residual weakness from the NA because of course as we all know, everyone recovers from it within a few years, and I am no exception. The EMG tests I just had prove that. I have had a complete recovery. These guys have been doing these tests for a long time, and they know how to read the results. OK then. But, as I pointed out, I had my last EMG test right after the winging started in my scapula, and that guy also concluded that I had no nerve related trouble. What? No answer for that one Dr know-it-all?

And what about the other symptoms I have brought up to you recently that may not be related to NA? They were conveniently forgotten since the Neurologist found no reason for them. So, I guess I made all of that up. And if I made that up, I must have made the rest of it up too, so we will just not talk about that. Oh, and by the way, I have to scoot.

No. Not me, the Doctor. HE had to scoot. My appointment was for 11:30 am. I was in the exam room by 12:20. I had my vitals taken by 12:35. I think he came in at 12:40 or maybe a few minutes later. I was in my car and pulling out of the lot by 1:00. HE had to scoot. Where was my appointment? Oh, I guess I was waiting all through it, and beyond. No wonder he had no time to talk to me.

Sure, he was running behind. I am happy that by cutting my visit so short, I helped get him back on schedule. I do know one thing. The person he had to scoot to wasn’t in the waiting room yet when I got the call to go back to my exam room. It is nice to be taken so seriously by the person you have entrusted your life to.

So, as I said. . . I am done. No one will take me seriously. No one gets NA, or HNA. And I guess aside from the essential tremor that he actually did see, I must only think I have the rest of it. There is no reason for the rest of it though. So, I must be making it up about my eyes and the other weakness being anything to be concerned about. You see, it just does not feel right for me to be this way. Maybe it is just not far enough evolved yet to be on their radar. They did not see the essential tremor when I first felt it. Maybe this is like that, and eventually it will be enough that any idiot doctor can tell something is not right. Or maybe I am lazy.

All I know is that I am done doing this blog for now. I have nothing new to share on anything that is pertinent to anyone with NA. And my complaining about doctors is not productive for you or for me either.

Say hello once in a while. I am still here, just taking a break from writing for a while.

From pushups to tingles. . .

2010-01-04T09:17:00.000-08:00

Well, if you are following this in any way, I had worked my pushup count back up to 20 very slowly, sort of taking my neurologist’s suggestion to exercise but do not overdo it. It still kills me that they think I am weak from not trying to exercise. Anyway, I had gotten to 20 about the time I had seen him last time- whey he told me I should be trying to exercise. A day or so later, I tried and could only do 15. I think those who have been here may already know where I am going. A few days later I tried, and could do 8 or so. Today, I could barely do 5. There you have my attempt at exercising slowly to build up my muscle mass. Yep. Right.

So, the tingles of last week are gone too. They only lasted that one day, and however active that was it turned out to be just a fluke in the overall scheme of things. Or at least, if it did mean anything, what it meant has not become clear yet. I have no improvement of movement or strength. And, I have no decrease of movement.

It goes on. If I can get my last couple of months of insurance straightened out by tomorrow, I have another appointment with my regular doctor to discuss the findings of the Neurologist. The end of next month, this insurance goes away, and I will have to figure out a new way to pay.

My right hand. . . Now what?

2009-12-29T15:32:00.000-08:00

It has been a while since I have written anything that actually was about NA, the subject of the blog. As it turns out, I have been preoccupied by other matters.

Remember that my right hand had been the site of my original attack of NA? Today, when I woke up, I began to notice that my right thumb and index fingers were tingling a bit. This increased through the day, and has been going on for around eight hours now. It increases when I stretch my arm out away from me. This is from the lower part of my hand, radiating out through all but the little finger. It has now been just under ten years since my first incident with my thumb and index fingers of my right hand. And my hand has been pretty much a quiet and a non issue for at least 5-6 years.

What does this mean? Hey, even though I got lucky with the diagnosis for my shoulder, I have no clue about this. Doctors I have seen pretty much implied that any tingling like this would happen only early on in the injury, and then it would eventually stop. And, they did not seem to be suggesting that the tingling was a good thing. What do I know? Not much. All I know is that the last time I felt this much activity in my hand was right before I became able to move my index finger again. And one more thing; I have routinely stretched my right arm out in the way I am now doing that cases the tingling to increase, and there was nothing. Tomorrow, maybe there will be nothing again. But for now, I know something is going on that has not happened for a long time.

To spill, or not to spill

2009-12-24T12:45:00.001-08:00

I had known I had a tremor before but I did not choose to do anything about it until it started to impact me in a way that others would notice. I guess some might have noticed me before this, but I could still believe that they would not be sure they had really seen what I could feel happening. It all started at Starbucks.

“Do you want room for cream in that?”

Of course not; if they leave room for cream, they are cheating you out of coffee you have paid for. Anyway, if you ask for room for cream they always leave too much room for me. I just like a splash of it for flavor. And nine times out of ten, they still leave enough room for cream even when you say not to. That tenth time in this case, is the one that got me.

My barista (it is hard to think of them as baristas when they are filling a paper cup with coffee from Starbucks) filled my cup, and snapped the “to-go” lid on. I took it over to the sugar and cream station and removed the lid. My coffee about spilled over even sitting on the table there, it was so full. I thought to myself, ‘I will just pick this up real quick and drink it down a gulp or two so I can put some half-and-half in.’ And there would have been a time in my past that this would have been the thing to do. But, now was not that time.

I had raised the cup up halfway and it was already about out of my control. I stared at my hand willing it to be still, knowing it would not, but still unable to continue raising it, or lowering it back to the table. The shake got worse. It is funny that I should have known this would happen with a paper cup. It always does to some extent. If it had been a porcelain mug, the extra weight would have made it a steadier task. But these paper cups are just the right weight to set up a tremor, and I knew that. Why didn’t I think to steady my right hand with the left? It is a strange thing that putting two shaky hands together for me anyway, still works to steady things down a bit. But, how would that look? In some ways, using my left hand as a stabilizer would have been admitting that I had a problem. Yes, it would be much better to just stand there with cup half way to my mouth. By then, it was too late to do anything anyway. The coffee was splattering over my hand by then.
My first thought was that this stuff was way too hot to have tried to sip down to a more manageable level anyway. It was better to burn my hand a bit than to have to nurse a burned tongue for a few days. And it had the same effect as having drunk the coffee to a manageable level in the cup.

Now the worry was how many people witnessed my accidental spill? Where did Starbucks put the napkins again? It always seems like they hide them. OK, just sop up the spill, and move on. Of course I am shaking even more now with the added stress. People are around me waiting for me to move out of their way. No one wants to rush the poor old shaking man who just spilled coffee on his hand.

I have tried to be better about these types of events since then. Of course, now I am on Propranolol so that limits my shake to a degree. And, I am trying to be less caring about what others may see when they look at me. Maybe they understand. Maybe they do not. Maybe they have something they are sensitive about also, and they are not even looking at me lest I notice what they are attempting to hide. Maybe next time they ask me if they should leave room for cream, I will just say, “yes- leave a bit of room.”

I am cured. . . not

2009-12-23T08:33:00.000-08:00

That is right. I saw my new Neurologist yesterday and today I am healthy. It is funny; I do not feel particularly different. I think that is because he chose to ignore certain things I said and focus on his machines that all predictably functioned flawlessly and told him that I had no neuromuscular problems. Everything is just fine here. No reason to ever come back to see this one. I am done.

So, what happened about the lower than normal CK blood test results? It all depends on who defines what is normal I guess. The lab that actually did the test flagged the results as lower than normal. My doctor did not even say that result was there. If I had not gone in and gotten my own copy of the results, I would never have known it existed. He would have been content to not even discuss that. But, according to him, he was only interested in that count if it was elevated. That is why he glossed over it.

What about my weakness you ask? Well, so did I. He suggested my weakness is only in my arms and it is due to my NA only. What about the crash in muscle function? It is of course because being out of shape as I am, I over did my recovery and potentially blew out the axons connected to the nerves that had regenerated to carry on new muscle return in my arms.

Well, that may fit for the arms. But it says nothing about weakness in my lower abdomen or legs. Well, if I am weak there, it is because I am out of shape, he suggests. There is no neuromuscular issue in my legs or feet. But, he did not test in my upper thigh which is the area I pointed out feels odd. And he did not test in my stomach area which is where I pointed out felt weak. When I told him I had done 10 sit ups and could not do even one ten minutes later, he suggested that I had used my weak arms to aid in the sit ups, and that was why I had trouble doing them.

Why do doctors always know you better than you know yourself?

Jury is still out

2009-12-17T10:51:00.001-08:00

I do not have any official answer yet, but a new result is here. I seem to have a lower than normal total CK reading. That is a test of Creatine Kinase levels. Lower than normal readings could point to either late stage Muscular Dystrophy (levels are usually higher than normal in earlier stages and decrease as muscle mass decreases), or Myasthenia Gravis. Since I already reported I have certain signs of MG, I tend to think that might be the case. But again, just because I have beat my doctors to what turned out to be a correct diagnosis in the past (my diagnosis of NA)it doesn't mean I am right this time.

Finally relief for the tremors and twitches

2009-12-10T15:11:00.001-08:00

For more information on Essential Tremor, see http://www.essentialtremorinfo.com/

For those who have been on this journey with me, I finally have some relief from the twitches and tremors that have cropped up since my NA started. I am not 100% sure that they are related to the NA, but it is a fact I did not have this before and have had it since the NA started.

Essential Tremor in itself is not life threatening, but it may depend on the cause just how much of a problem it becomes for you. It can be benign but it may also be related to things you do not want to ignore. I have never ignored mine. I have even pointed it out to doctors along the way. Most of them have noted officially in their reports that “no tremor was noted”. These guys were taking the easy way out, or they were blind, stupid or both.

Basically, this tremor is caused by some sort of underlying neuropathy that makes sets of opposing muscles start to work against each other. Normally these muscles would be able to balance the load. With essential tremor, one set gets weak in relation to the other. The muscles fight each other instead of working together. The result of that struggle is seen as tremor. The twitches may be related in a way I do not understand.

Is this a part of NA? I do not know. My Neurologist suggests that the tremor differs from NA in that NA is a peripheral in nature, and essential tremor is central. All I can say right now is that my Neurologist is not speculating as to a cause until he sees test results. Yep. I had to have another blood draw. That is three in the last 3-4 months. He did put me on Beta-blockers though so I can get some relief from the constant twitches and tremor. These have gotten worse of late. But, I have been living with them, and while I have been OK for the most part, I really notice, now that they are starting to go away- just how bad they had become. I am much better now after just a couple of days. My body feels more balanced. It is calmer than I have felt in years. When I sleep, I really sleep. It is amazing to realize just how much of a disruption to my sleep that these twitches had become. And for the first time is ages, I can hold a cup of coffee without steadying it with my other hand. I just feel that I have gotten more in control of my everyday life.

What now? I am still waiting. I know that there is no current cause in my brain- or it has not shown up yet anyway. So my life is still up in the air as far as a cause for any of this. But at least I feel more of the finer things (related to fine motor control) of my life are improving. I will spill less coffee as I wait for more information.

Short update

2009-12-08T16:21:00.000-08:00

Pushups are now back to 18, and a struggle.

Brain MRI is negative as far as any pathology goes. So I have a large healthy brain.

New Neurologist is very interested in my tremor and the family history. He gave me a prescription (beta-blocker) to help control the tremor and wants to do the EMG still. He is very thorough and no doubt that he will do a better one than any previous attempts. Oh, and he wanted to do his own blood test.

Other than that, I am hanging in there. It is a relief to find out that I do not have anything tumor-like in my brain.

This could get complicated. . .

2009-11-25T12:13:00.000-08:00

I went to my primary doctor last week or so, and told him about the tremor and rapid eye movement and other things that may not end up being related to HNA, since he really can’t talk about that in particular. I demonstrated the tremor, and told of the muscle strength fluctuation. I mentioned my guess at Myasthenia Gravis as being a possible cause. By now he is not surprised by my suggestions anymore. He thought it might be possible, but that the specific type of rapid eye movement may suggest something else too. He did not want to speculate. Instead he ordered a bunch of blood tests, an EMG test, and a brain MRI.

What I find that may be related is called Meniere's Disease, which can cause rapid eye movement, vertigo and balance problems. It can also cause tinnitus of at least one ear. I can see why he did not want to speculate. As much complaining as I have done previously about the ability of doctors to know what I have- there are so many things out there that I am surprised anyone ever really knows what may be going on in their body.

I have had at least one attack of vertigo, one attack of rapid eye movement and I have slight tinnitus in my left ear. I sometimes feel as if my balance is off a bit. Who knows at this point if any of this is related?

He mentioned one thing to me during my visit that could pertain to anyone trying to figure out what is happening to them. He suggested that my increased level of focus on any new symptom may or may not really be helping. As Freud eventually said about dream imagery, sometimes a cigar is just a cigar. Maybe in my case, all of these other things are just random passing things, and not related to any long term issues. Due to my increased sensitivity of focus, I am concentrating on things that may not really be there- or my focus is making them appear to be more than they are.

One note though, I do know that I have a brain. The MRI at least proved that. My parents would be happy to finally know that. There was a brief time when I was younger that I would have liked to have this proof. For a time they wondered if I really had a brain in my head. . . And according to the MRI Technician it was the largest one they had seen that day. I do have a rather large head. It is nice to know it is not empty.

Myasthenia Gravis- another possiblity

2009-11-13T17:32:00.000-08:00

I have been accepting of my diagnosis of Neuralgic Amyotrophy in the past. Of course I have kept looking just in case something else popped up of interest that may be a closer match. I may have found that. Myasthenia Gravis (MG) is an autoimmune disease (what isn’t an autoimmune disease anymore?) that explains quite a few of my current symptoms, including the weakness in my eyes and my fluctuating muscle strength. If you search “fluctuating muscle function” you will only come up with the one disease; Myasthenia Gravis.

From Wikipedia http://en.wikipedia.org/wiki/Myasthenia_gravis Myasthenia Gravis “is a neuromuscular disease leading to fluctuating muscle weakness and fatigability. It is an autoimmune disorder, in which weakness is caused by circulating antibodies that block acetylcholine receptors at the post-synaptic neuromuscular junction,[1] inhibiting the simulative effect of the neurotransmitter acetylcholine. Myasthenia is treated medically with cholinesterase inhibitors or immunosuppressants, and, in selected cases, thymectomy. At 200–400 cases per million it is one of the less common autoimmune disorders.”

They go on to say that it can be difficult to diagnose due to subtle differences in presentation of symptoms and similarities to other diseases, and that it tends to run in families that have other autoimmune diseases.

One thing that always perplexed me about my condition was that it seemed that my eye problems started about the same time as my most recent attack. MG would explain that. It can cause double vision and blurriness of vision. I had this very suddenly only a few months after my eyes had been checked and were said to be OK. I am not sure I had mentioned that before all this started, I also had an episode of rapid eye movement (while totally awake). And MG would also explain the intermittent return to strength followed by weakness again after intense exercise, as mentioned earlier when I quickly worked up to 25 pushups done twice in one day, followed by a collapse of strength the next day, and for a few weeks after. By the way, I am now up to 16 pushups. As much as my muscles were shaking when I tried last week to get to 14, I have been able to do 16 once since then.

So, this is something else to consider. I know that there were a few of you out there who had issues with your eyes as I have also had. I am going to ask my Doctor if MG could be the underlying cause of my problems. Of course, nothing says I could not have NA and MG. I may have to start another blog yet.

For more Myasthenia Gravis information, see this site:

http://www.ninds.nih.gov/disorders/myasthenia_gravis/detail_myasthenia_gravis.htm

They point out the common symptoms listed here from the site:

"In most cases, the first noticeable symptom is weakness of the eye muscles. In others, difficulty in swallowing and slurred speech may be the first signs. The degree of muscle weakness involved in myasthenia gravis varies greatly among patients, ranging from a localized form, limited to eye muscles (ocular myasthenia), to a severe or generalized form in which many muscles - sometimes including those that control breathing - are affected. Symptoms, which vary in type and severity, may include a drooping of one or both eyelids (ptosis), blurred or double vision (diplopia) due to weakness of the muscles that control eye movements, unstable or waddling gait, weakness in arms, hands, fingers, legs, and neck, a change in facial expression, difficulty in swallowing and shortness of breath, and impaired speech (dysarthria)."

Push-ups near topping out at 14

2009-11-05T16:37:00.000-08:00

I thought it might be time for a push-up update. I am now up to 14, but I think it might be near a topping off for now anyway. I know I can do more- as I have stated elsewhere I can do 25 twice in a day under the right circumstance. It just feels like my strength does not want to increase like that again. Of course, being able to do 25 twice in a day seemed like it might be a fluke at the time, and it turned out to really be a fluke.

What happens now as I try to push towards 14 is that the rest of my body starts to protest. Everything else starts to shake under the stress starting on number 10 or so, and it is all I can do to keep going. It is hard to think I can get higher than 14 unless the rest of my strength can improve a bit, and I am not sure it will yet.

Other strength issues have surfaced since I switched to heavier bedding for winter. It usually has taken only a day or so to adjust to the heavier blankets at this time of year even since the 2006 attack. This time though, it continues to be a struggle to turn over a couple of weeks after the switch. Something may eventually have to give here. Either I will live with it, or have to go to different blankets. Or, I guess my strength may still recover a bit. I still hope for that, and I try to work towards it, but at this point I have to say I wonder how much I will get back when it still feels like certain muscles are getting weaker instead of recovering.

29 gifts in 29 days

2009-10-26T17:26:00.000-07:00

I normally would not suggest something like this link unless I had read at least some of the book that the person has written. But, I liked the points she brought up earlier on the Today Show. Here is that link

(http://today.msnbc.msn.com/id/26184891/vp/33478623#33478623)

In a nutshell, Cami Walker is a young woman who was diagnosed with MS shortly after getting married. Her disease symptoms progressed quickly. She was losing her eye site, had problems walking, and was in such pain she was having problems with the basics of her life. Her Spiritual Advisor and friend told her to stop focusing on the disease and start giving to others. See more here:

http://www.29gifts.org/

According to her, when she did this, her symptoms improved. In the Today Show interview she says that there was a point that she walked away from her cane and did not even notice until later in the day. MRIs now show that the progression of her MS has stopped.

Now, I am not suggesting that I completely buy into the claims, but I am open to them. I know negativity can make things worse. It would seem that doing a small act of kindness could make things better. I do know that even though I do not have MS (at least not to my knowledge) that I have to keep reminding myself that it is harmful to identify myself with any sort of disease symptoms I may have. Too much negative focus on this sort of disease can only make it worse. Maybe she has the right idea.

You are not the disease. The disease is not you.

Keep those joints moving!!!

2009-10-26T17:06:00.001-07:00

Hello Blog People- You know who you are.

It has been a while since I have written anything substantial. A week or so ago I woke up in the middle of the night and wrote an entry in my head as I lay there trying to fall back asleep. It still has not been written, but it would deal with the importance of KEEPING YOUR IMPACTED JOINTS MOVING.

(DISCLAIMER- I am not a Doctor or a Physical Therapist- Do any exercise program not prescribed by them at your own risk-)

Movement is essential to regaining any of your strength. What good would it be to get back strength if you could not move the joint? Start passive movement of the joint as soon as you can do so without pain. Your Physical Therapist can give you exercises to help. But remember that PTs are just there to remind you of what you should already know about your body. If you do not use it, you will lose it. In order to use it, it has to be able to move. Strength will follow.

A good and easy passive arm motion exercise is to just bend at the waste, and let the impacted arm hang lose towards the floor. Gently swing it using movement of your upper body. Swing it back and forth, or in a circular motion. Maybe go one way for a few turns, and stop and reverse. Do not use your arm muscles in any way to do this. That is the passive part.

Another passive exercise you may be able to do yourself if your good arm is good enough to lift your impacted arm through its range of motion. Or, you can enlist the aid of someone you trust. I say that tongue in cheek a bit, but trust is important in dealing with allowing someone to lift your arm for you and move it through range of motion you may not have. You have to be aware of when and if it is uncomfortable for you, and they have to be aware that you may not react in time to stop them before you reach that point. It is best to do this after being shown by a Physical Therapist, but if you do not live with one, you may have to improvise.

You can also do arm movement on your back on a bed. At that time, your scapula is fairly well supported, and may actually be in its normal position. When I tried to do range of motion on my back in this way, I was pleased to discover I could do a lot more movement than I thought I could do. But still be careful.

Regular readers know that I have used push-ups as a gage of my strength being there, or not. This is not something you should just start out doing on your own, or at least, not full push-ups. My PT suggested to me that I start with scapular push-ups. For these, you get in the standard position, but instead of lowering yourself to the floor, you attempt to just flex and release muscles of your scapula. It is not easy to describe. Here is a You-Tube video (http://www.youtube.com/watch?v=z4G0lSwL2os). It would be better if the guy was shirtless to see if he had the right technique, but it looks OK to me.

Along with those, there are various stretches to try. Stand in a doorway and put your arm up at a 45 degree angle as if you were motioning for someone to stop. With your arm against the door jamb, push through the door enough to slowly stretch your upper arm.

Then there is wall walking. I tell you, the internet has everything. I was going to try to explain this, but here is a link that does it with pictures. http://nih.kramesonline.com/HealthSheets/3,S,89905 Like it says; do not try this unless you have been cleared by a professional. I was cleared fairly early. In fact, I think it may have been too early. It was at least before they knew I had the scapular winging. But, the range of motion and strength I have to lift my arm over my head are because I did this exercise from the beginning.

What if your arm is OK and you have a problem elsewhere? Well, for me, my hand was also impacted a few years earlier. All they told me was that I should keep my tendons flexible. Be creative. Your hand is a lot easier to do passive exercise on. People may look at you funny, but you really have to make it such a habit to keep your fingers moving that you do it without thinking about it. Do a bit of passive, and then try to actually move the fingers that will not move yet. I mixed this a bit, and physically moved the finger with my left hand as I tried to move finger of my right hand on its own. It would also help to have some sort of electric muscle stimulation treatments. At least, it helped me. I was lucky that a Physical Therapist who was interested in my case loaned me a muscle stimulation unit that was surplus for his practice. I used this at least a couple of times a week as my right hand returned to function.

Well, that is not quite how I wrote it in my head, but it will do. Good Luck getting movement back!!!

Strength return – Pushups again

2009-10-18T11:41:00.000-07:00

On Oct 3rd or so, I had been able to increase my number of pushups back to around 7. Here it is Oct 18, and I have now been able to do 10 for the last few tries. And I have been giving it a couple of days of rest between attempts. Being able to do 10 again seems a bit disappointing in a way. I know the muscle is capable of doing 25- somehow because it was not all that long ago that I was able to do 25. I find it frustrating that I have to dial down my expectations. But, I also do not want to over fatigue myself and hurt my recovery as I did last time.

On the bright side, my right scapula feels pretty good while doing the pushups. But, my upper arms are still pretty weak and the tremors continue.

Tremors and twitches anyone?

2009-10-12T13:02:00.000-07:00

It sort of bothers me at times that when it comes down to it, I am not 100% sure what I really have. It almost bothers me more that I was the one to come up with the original diagnosis from the internet. I guess what I am concerned about is that once the doctors had the idea of what I thought I had, that they just went along with that because the symptoms I suggested I had seemed to fit those of NA. Sure, since that point, a couple of different doctors have agreed with that assessment, but what if they are wrong? What if I left out an important symptom early on because it had not happened yet? Now that it has happened, what if they ignored it because it was a new symptom that did not fit the set diagnosis?

One thing that bothers me is the tremors and muscle twitches I seem to still have. I do not see much mention of this in any of the symptoms lists for NA or HNA. I can see how the tremors would happen due to muscle fatigue of impacted limbs, but why if this is such an obvious thing with me is it talked about so little (if at all) in any of the web pages? My recent visit with the neurologist got me wondering about the little tics and twitches I have had since this started. It used to be that I would notice my foot twitch or a hand as I was resting. Or maybe I would kick my lower leg out as if some invisible doctor was testing my reflexes by tapping below my kneecap. But more recently, I have noticed individual fingers twitching. This morning before I got out of bed, I noticed my little finger, middle finger and thumb of my left hand twitch numerous times over a period of a half hour or so. I have to wonder if anyone else has these sorts of things happening to them. Leave a comment if you like. Thanks.

H1N1 (aka Swine Flu) Risk factors for Autoimmune Diseases too

2009-10-06T10:45:00.000-07:00

I had seen information suggesting risk factors included immunosuppression disorders, but not autoimmune disease directly. Of course, it is only a theory that HNA or NA has an autoimmune trigger. And, I would think some autoimmune diseases would be more a factor than others.

From Medpedia http://wiki.medpedia.com/Influenza_A_H1N1

“Risk factors are not yet known, other than exposure to pigs or people infected with Influenza A H1N1.
The current outbreak is atypical in that, thus far, the majority of the deaths from Influenza A H1N1 have occurred in Mexico. Furthermore, most have been in young adults. Regular influenza typically affects infants and the elderly the hardest.
With the H1N1, adults over the age of 60 may have protective immunity from prior related infection.

Pregnancy is being identified as a clear risk for more severe illness. (see Complications and "H1N1 in Pregnancy)

Other groups at higher risk of infection and complications from Influenza H1N1 include those with chronic lung disease (including asthma), cardiovascular disease, diabetes, and immunosuppression (including autoimmune disease), and morbid obesity.”

To pushup or not to pushup- that is the question.

2009-10-03T16:29:00.000-07:00

After I had pushed things too far and fast, I cut back on pushups completely for awhile. Now, it seems I can do 7 regularly. This is quite a ways off from my recent high of 25 twice in one day. But, it is better than only being able to do 3 or so, which had been my recent average. I will work at this more slowly. I guess it took a few years to lose all the muscle. I should not expect it to all come back in three days.

I may have blown it pushing for more pushups too soon

2009-09-26T17:04:00.000-07:00

I have to say that I was pretty stoked with my recent increase in the number of pushups I can do. I went from basically nothing, to 25 within a few days. And then I had to try to do even more that last day and did another 25 on top of that. It may have been too much, and too fast. Friday, I tried again, and I could only do 10. Today, I tried and could only do 7. What is up with this?

I guess I overdid it. Maybe I should have been content with doing them every other day, or stayed at the same counts for a couple of days before increasing the numbers. It felt OK when I was doing it though. Now it feels like I am crashing again.

25 more 3 hours later. . .

2009-09-24T12:51:00.000-07:00

I have to say I was just curious if I could do more today, and I did manage 25 more just three hours after the original 25 this morning. I am beginning to think this may not just be a fluke.

Now what? One more pushup update: 25?

2009-09-24T09:32:00.000-07:00

Today, I really did not know if I would even try to do any pushups. I was almost afraid that I would fail to do more than a few. And, my muscles in upper arms and chest area and around my lower back were sore. I figured that part was probably a good thing. It meant I was actually forcing muscle back into use that in some cases may not have been used in three or four years at least.

Imagine my surprise when I got up to 25. I do not even remember the last time I could do 25 pushups. It may have been back in High School when we had to do exercise as a part of our PE classes.

What is there to learn in this? Never give up!

If I had just sat around thinking I was weak, and my muscles were not going to recover a bit of strength, then that would become my reality. It would have been easy to just let myself waste away into nothing. But, it feels a lot better to know at least some of my strength is back. How long this will last is still a mystery. Since my doctors at this point have little if any input to my long term health related to NA/HNA- I have to take care of it myself.

DO NOT GIVE IN TO IT!

And today, 20 pushups

2009-09-23T11:57:00.001-07:00

I was almost afraid to try today to do any. What if I had returned to being able to only do 3-4? I have to say I never thought I would see the day I would be able to do 20 pushups again. It may seem a little thing to some. But you who have had the muscle loss from NA or HNA and have had to fight back for every little gain on what you had lost should understand this. I have to make the most of it while the response is there. I have to regain every bit of strength that I can at this point. Because my NA/HNA has shown itself to be able to repeat at intervals that I have no control over, I have to get stronger while I can. I know from the past that my return to normal strength will no doubt not be complete anyway. And who knows what will happen tomorrow? Where will it hit next?

Pushups again- Not a fluke this time anyway-

2009-09-22T16:56:00.000-07:00

I truly expected that the next time I tried to do pushups; I would be reporting fewer than 10- the number I did yesterday. It just seemed to me that was the normal pattern of the past. So, imagine my surprise just now when I did 15!!! Unheard of. Well, it was 15 just now, and my arms feel much better. In the past right after attempts to do this, they have really been shaking uncontrolled for a time after. This time, it is only a few minutes ago that I did them, and I have no shakes from the effort. And, my back felt a bit better this time too. We shall see if this continues.

Pushup Update

2009-09-21T12:04:00.000-07:00

Long term readers (if there are any) may remember the saga of my pushup history. A brief recap is that just after my right scapula started to wing in late 2006, I could still do around 20 or so pushups. A month or so later, that started to decline to the point where I could not do even a single pushup. Since then, the number I can do has varied from around one, to a high of four or barely five. Usually, I could only coax 2-3 out of my body before I would collapse.

There may be hope. Today, I was able to do ten.

Now, this still was not easy. I barely got to the tenth one. But, it was a full ten as low to the floor as I could ever go when I was stronger. One thing I noticed- other than my wrists feeling like they may break before I was done- was that my lower back and upper legs shook like crazy when I was doing them. Shaking may not be the right word. They just felt as if the muscles were firing inconsistently, and pulsing instead of holding steady as they should do. I used to wonder about that happening. Now I know it is due to the NA or HNA impacting nerves in my lower body and legs.

I said there may be reason to hope that this may be improving, but I am not really confident that will happen for me at this point. I am better today: maybe not so much tomorrow. This seems to go in cycles.

One thing it points out to me though is something I have said before. Never give in to this. Just because it seems that a muscle is no longer working, keep trying. If it is not working today, try again in a few more days. You may see a change. You may find a glimmer of hope.

Edging the lawn- revisited

2009-09-07T16:17:00.001-07:00

In an earlier post, I described my efforts at running a weed whacker around our lawn’s perimeter. We have a third of an acre, so this is a bit of a job. Well, lawn grows and like any yard work, if you do it one time, you have to do it again, and again. That goes well with what my last doctor said. He thought I should be doing a bit more.

Last time this job about killed me. Although I am not sure I am improving much at this point overall, this time running the whacker around the yard was not nearly so bad. Of course, it still did me in. I just had a faster recovery, and my arms did not shake nearly as badly, or for as long as they did last time. Why was that?
Since I am not sure I have really improved, I figure that my improvement with this job was more due to the fact that I learned how to do it in a way that was less demanding. This is one thing I have learned about over the last few years with NA. When you stop improving in your recovery, any improvement noted in doing tasks after that seems to come from your coping with the injury in new ways. If it bothers your arms to reach out to hold the weed whacker, hold it more in towards your upper body being sure to hold the upper arms against your body. If pulling the trigger makes you position your arm in a way that ends up hurting, use another finger to trigger it, and hold the thing differently.

Don’t get me wrong, I was still shaking at the end, but instead of having to let it drop out of my close to lifeless feeling hands, I was able to set it down. Instead of requiring a couple of hours of rest before I could think about moving again, I only rested a relative few minutes and then I could put it all away again until next time. Of course even though the aftermath of this run was an improvement over the earlier time, it did finally catch up with me later that night. Most things I do in the early part of the day do catch up with me now. And that is just one more thing with which to cope.

Just what are the terms? PTS, NA, HNA, BPN

2009-09-02T12:57:00.000-07:00

Parsonage Turner Syndrome would appear to be a more historic version of the disorder also known as Neuralgic Amyotrophy. Use of that older term honors the doctors who first described the disease that seemed to impact the right brachial plexus in most cases. They noted numerous probable causes including virus, parasites, bacteria, surgery and trauma (other than to the shoulder) that can cause an inflamation to the brachial plexus (aka "brachial plexus neuritis").

In addition to these causes, there is also a more rare type that is caused by a defect on chromosome 17, spoken of elsewhere here. This is a totally distinct disorder. While you can have recurrence of attacks in the acute form of PTS (NA), it is more common to have recurrence in the hereditary version of PTS, aka Hereditary Neuralgic Amyotrophy. It is also more common for the hereditary version to attack on both sides when it attacks. It is also more likely that if you have the hereditary version, your attacks could involve numerous different plexus sites, other than just the brachial plexus. It is interesting to see sites suggesting that HNA only involves the brachial plexus, and then have it go in to suggest that HNA can also impact your voice and breathing. The nerves for these functions are not in the brachial plexus. HNA can impact the following plexus sites: cervical, brachial, lumbar, and sacral. It also can impact the intercostals.

If your doctor seems to suggest that you have a right winging scapula for example, and you notice that your left arm is also weak, chances are that your left arm is also being impacted. My doctors tried to tell me my right arm was weak from lack of use instead of the weakness being due to NA- of course this was because as we all know, patients generally fully recover from PTS. When my left arm became weak with similar symptoms, they told me it was from overuse- making up for all of the times I tried to help my right arm by using the left. In truth, the left side weakness is also from NA, or possibly HNA. A later doctor confirmed I also have winging on the left side. If you have weakness in other areas, have it checked out. Your attack may be more involved than your doctors first thought.

All through my initial couple of years of doctor visits, I complained that I had lower back pain. Of course, they concluded it was not related. How could a right shoulder nerve disease also impact the left side of my lower back? Well, now you know. It is possible.

My legs shake in certain positions when trying to hold them against gravity. Is that a possible symptom? Of course it is. My arms and hands shake due to muscle fatigue of my impacted arms. This leg shaking is similar in nature. Since I know that my legs are innervated by a plexus site that can be impacted by NA/HNA, it is not a stretch to think that this is also an impact of the NA/HNA. And now my doctor has confirmed that I may have involvement with my legs

Whatever your doctor calls it, and whatever side your main impact is on, make note of similar symptoms on the other side, or in other regions. They could help in develop a more conclusive diagnosis.

Still no change- maybe that is a good thing

2009-08-20T11:28:00.000-07:00

At this point, I guess I have resigned myself to the fact that my shoulder strength may not ever return. At three years into my last major attack, I would have thought there would be at least some return, or a small incremental improvement that I would be able to pin a bit of hope on. Nope; nothing is happening. I have pretty much leveled out to being able to do only three push-ups, and they are a struggle. From the first one my arms are shaking so much I doubt I will be able to continue. At the second one I think, maybe I can get up to five this time. At the end of the third one, I know that is all I will be able to do.

And what about that flare-up I mentioned a while ago? Well, so far, I have not noticed any further losses related to it. But, it really has not been very long at that. I hope maybe I stopped the progression of damage with the prednisone. Everything in my neck and jaw has quite returned to normal by the way. My jaw muscles were sore for a few days and very stiff on the right side when I opened my mouth. But all is normal now. I can chew on that side without any discomfort. There is no lingering tenderness in the neck just below the jaw.

Now I just wait again until something else happens. I check my strength every few days. I can tell by my shaky arms and hands that nothing is improving. I just have to hope that it does not get any worse.

Just another weird coincidence with chromosome 17 and CMT disease?

2009-08-13T11:57:00.000-07:00

From

http://www.ninds.nih.gov/disorders/charcot_marie_tooth/detail_charcot_marie_tooth.htm

“What are the types of Charcot-Marie-Tooth disease?

There are many forms of CMT disease, including CMT1, CMT2, CMT3, CMT4, and CMTX. CMT1, caused by abnormalities in the myelin sheath, has three main types. CMT1A is an autosomal dominant disease resulting from a duplication of the gene on chromosome 17 that carries the instructions for producing the peripheral myelin protein-22 (PMP-22). The PMP-22 protein is a critical component of the myelin sheath. An overabundance of this gene causes the structure and function of the myelin sheath to be abnormal. Patients experience weakness and atrophy of the muscles of the lower legs beginning in adolescence; later they experience hand weakness and sensory loss. Interestingly, a different neuropathy distinct from CMT1A called hereditary neuropathy with predisposition to pressure palsy (HNPP) is caused by a deletion of one of the PMP-22 genes. In this case, abnormally low levels of the PMP-22 gene result in episodic, recurrent demyelinating neuropathy. CMT1B is an autosomal dominant disease caused by mutations in the gene that carries the instructions for manufacturing the myelin protein zero (P0), which is another critical component of the myelin sheath. Most of these mutations are point mutations, meaning a mistake occurs in only one letter of the DNA genetic code. To date, scientists have identified more than 30 different point mutations in the P0 gene. As a result of abnormalities in P0, CMT1B produces symptoms similar to those found in CMT1A. The gene defect that causes CMT1C, which also has symptoms similar to those found in CMT1A, has not yet been identified. “

Charcot-Marie-Tooth_disease -And early onset Glaucoma

2009-08-13T09:02:00.000-07:00

http://en.wikipedia.org/wiki/Charcot-Marie-Tooth_disease

I am making a quick post for this. Some symptoms are similar to HNA/NA, others not. But, there is one "phenotype" of CMT I see that does cause early onset glaucoma. One thing though- the weakness pattern is similar to HNA, but I have not seen any entry for CMT that talks about winging scapulas, of anterior interosseous nerve problems I have had. My guess about glaucoma and HNA, if it is related to HNA at all, no one has taken the time to check into it yet.

Flare-up update

2009-08-12T08:51:00.000-07:00

Well, whatever this was, it seems to be over. The first two days of the prednisone I also took ibuprofen. The next two days, I quit the ibuprofen. Now, it seems to be back to somewhat normal- whatever that is anymore. If this was a real flare-up, I guess I will see fairly soon what will happen now. If not- I wonder what it really was.

Possible flare-up

2009-08-07T14:20:00.000-07:00

One thing I have noticed since all of this started is that I am very sensitive to any little pain that may pop up, and I worry that it may be the harbinger of further losses in my near future. Here is an example.

For the last couple of days, I have had my usual headaches on my left side, but I have noticed that I seem to wake up in the morning with the headache already going strong. On occasion I have also had some pain travel across to the right side, and sometimes it seems it has been centered in the area of my right jaw. I had begun to wonder if it was related to my teeth, but it seems to move around and be more associated with the muscles of my jaw. About then I notice that my neck on the right also feels quite sore and tender, and my upper shoulder is also beginning to hurt. I think here we go again- what am I going to lose out of this round?

You do not really think much about how simple a thing it is to be able to hold your head up, and turn it from one side to the other until that attempted movement causes you pain- whatever this is caused by. Ibuprofen does not help, and it is the strongest thing I have at my disposal at this point. Then I remembered I still had some prednisone, so I tried that. Prednisone had been prescribed for me to use in the event that I felt an “attack” coming on. The thought is that it might help mitigate the losses by knocking back some of the inflammation of the nerves. Whatever this is, it seems to have helped. Now, I just have to hope that I caught it before much additional damage happened.

2009-08-03T11:07:00.000-07:00

You might wonder, and maybe I do at times also- why I do this. Well, one of the first things I realized after I started to get an idea of what I had going on, was that there did not seem to be a lot of good information out there, and there were not any places that told about NA or Parsonage Turner Syndrome from the point of view of the patient. In other words, once I left the doctor’s office, I felt totally alone.

As it turns out, there is a wealth of information, although some of it is not complete, and other parts are a bit misleading. And, even though I felt alone, I knew there had to be others out there- as rare as this is.

This blog lists some of the better sites I have run across as far as descriptions of what to expect in NA or HNA. It also talks about what I have found in my progress or lack there-of, over the years since this started for me. Through it, I have met a few people who also have this affliction in their lives.

You are not alone.

I have links to these sites also. Through them you may be able to contact others who have PTS. Since PTS seems to have an official cause of being an auto immune caused disease, these links go to sites for all autoimmune diseases. There are forums available on these two sites, and there are PTS threads. Or, feel free to start your own. Here are the links again:

The Autoimmunity Community
http://autoimmunitycommunity.org/phpBB/

American Autoimmune Related Diseases Association
http://www.aarda.org/forum2/

Here is something from the Seattle Children’s Hospital Research Institute’s Research Center for Genetics and Development

2009-07-30T11:23:00.001-07:00

Here is the site.

They are doing research on HNA and a few other genetic diseases. I have cited web pages before with previous research done by Drs Hannibal and Chance.

More on “The clinical spectrum of neuralgic amyotrophy in 246 cases”

2009-07-24T16:59:00.000-07:00

There is an awful lot to absorb in The clinical spectrum of neuralgic amyotrophy in 246 cases .

My last main attack happened in Oct of 2006. In Nov of 2008, I had a sudden episode of blurry vision. By the time of my appointment to have this checked out, my vision had started to return to normal, and by the time my new glasses were ready, it was fine- and that particular prescription was never quite right for me. During the exam, the doctor found that one eye had pretty high intraocular pressure, and the other was a bit higher than what is considered normal. After a range of eye tests, and rechecks of my eye pressure, it was determined that I had glaucoma. When I asked specifically if the blurry vision was related to this, they said it was not. What was it then? No one has told me. But, it was the reason I went to the doctor only four months or so after my last most recent exam showed I had no problems.

What did I do? I assumed my previous eye doctor had messed up somehow, and not noticed my pressure had been increasing- or if they had noticed, that they did not tell me to watch it. I went back to them and got a print of my eye pressure readings over the last five years. It showed that the pressure was normal until 2006, and then started a slow rise with a peak in early 2008. The cause overall is not really known, but there are certain population groups that are statistically more likely to develop it in their lifetime. I was not in one of those groups. Why did I get it? Just lucky I guess.

Of course, one thing I thought of immediately was if NA or HNA could increase the chance I would develop some other disease, like glaucoma. I could not find, and still have not found any study or site that suggests a link. Blurry vision can be an early indication of up to 774 medical conditions according to Wrongdiagnosis.com, including glaucoma. Hmm. Maybe I need a new eye doctor too. Anyway, the one I was thinking of considering my other problems was optical neuritis, which can be a precursor to Multiple Sclerosis. Optical neuritis usually only causes blurred vision in one eye, and both of mine were blurred, so maybe something else was going on? But, was it was a stretch to think that a neurologic problem that caused a shoulder to go bad could also cause an eye problem? Since then, I have learned a lot about this particular problem though. It is never as simple as just saying that because the main complaint of those with NA is that they have right shoulder problems it means that any problems they have will be restricted to that area. As this study referenced shows, it can pretty much impact any nerve group any place. They say there is “no significant difference in clinical characteristics between INA and HNA patients, except for the age of onset and the total number of attacks, and possibly for the involvement of nerves outside the distribution of the brachial plexus, such as the phrenic, lumbosacral plexus, intercostals or cranial nerves, which has mainly been reported in HNA (van Alfen et al., 2000 )”.

I am not sure about the intercostals involvement, but that reference to cranial nerves jumped out at me. This is because the second cranial nerve is the optic nerve, and that may provide me the link I have searched for. If HNA/NA can involve the cranial nerves, it is not a real big stretch to think that it may have been the underlying cause for my case of glaucoma. Because if you look at the eye pressures I had as tested, they are about normal before Oct 2006, and then they start to climb. My blurred vision episode had been preceded by periods of eye pain, and tearing. Blurred vision can be a symptom of glaucoma.

I am curious if anyone else out there with HNA or NA has had vision problems.

The clinical spectrum of neuralgic amyotrophy in 246 cases

2009-07-22T11:12:00.000-07:00

I think I may have cited web pages that refer to this study in the past, but this link I have added goes to the main study results where before I may have only been able to find the abstract to the study. Click here for the complete listing-

This study was quite extensive as are the results in the web page, and is worth looking into if you are a NA/HNA sufferer. I will leave a link to the pages out to the right in my links section.

That’s funny, you do not look sick. . .

2009-07-20T16:11:00.000-07:00

Related to this, see my link to the right for “Spoon Theory- Funny, you don’t look sick. . . “

You know, one thing about NA/HNA is that because the expression of the symptoms can vary so much, it is hard to really for someone else to see that it is impacting your life. In fact, just to look at me, unless you were a trained health professional, you may not be able to tell I had anything wrong unless I took my shirt off, and you saw my scapula were not right. And even if you were a health professional, you may miss it.

In my previous entry I described how doing relatively easy “work” for an hour impacted me and my arms and hands. That shaking was real to me, and it is really one of the few outward signs that I have of this “disease” that others may be able to see. Yet, even though others may know I have this condition, and they see it manifest in this manner, they still make comments like, “Oh, you are a weekend warrior- I guess you must be a bit out of shape.” Well, yes I am no doubt a bit out of condition right now, but it this shaking is not due to being a weekend warrior in the garden. “Well, look at that, I am out of shape too- See how my hand is shaking too?” Yes. But the difference is that my hand was shaking before I started to work out here, and at this point, I am not sure I will be ever to ever get back into a condition where my hands to not shake. It may be true that your hands shake a bit after doing too much work- but my hands shake all the time. It does not matter if it is picking up a paper cup of coffee at Starbucks, or after working out in the yard for an hour. My hands will shake. In fact, I can wake up in the middle of the night when all I have been doing is sleeping, and if I reach for the covers with my left hand, it will shake.

Well, I can’t complain too much about this. The other person spoken about here does not want me to think of myself as being different than I have ever been. And, I do not want to roll over and let the condition take the rest of my life away by acknowledging that since I started to express certain symptoms, I can’t do this, I can’t do that. Sure, there are certain things that I do not feel comfortable doing now. But, I can still do a lot. It is just that doing some things takes it out of me in a different way than it used to. Doing this job of edging the perimeter of the lawn used to be a job I could do with no problem. Then I would go on and do the next thing, and the next thing, etc. Now, doing the perimeter edging is it for the day. After that, I am done. And if there was a job I got to before I tried the edging, it may be that only part of the edging will be done, or if it is completed, I will be done for a bit longer. I am learning that there are limits to what I can do anymore, and I do not like it. Sure, I am getting older and maybe there would have been age related limits at this point anyway. But, I am getting those too. It doesn’t seem fair.

But, I know there are younger people learning that they have NA/HNA every day. At least I did not develop symptoms until I was in my mid 40’s. I know of a family who has a young child who has had two attacks already, and has bilateral winged scapulas at around age 10. I think of him and realize I really should not complain about my lot. I guess I am lucky I do not have worse going on with my health.

Just when I thought it was safe to go back into the garden. . .

2009-07-19T11:34:00.000-07:00

I have tried to take it easy doing manual labor type stuff around the yard, but sometimes there are things you just have to do. So, I have tried to do some pruning and other light work that minimizes shoulders and arms. I have done pretty well at my few attempts at yard work. If it is too heavy, I know right away to stay away from lifting it. Then, there is the simple task of edging the perimeter of the lawn with a weed whacker. It is simple if you have normal upper body strength and no neurologic difficulties.

The weed whacker is only a few pounds, so it s well under my weight limits, and I am not lifting it over my head, so that is all within my restrictions. And for the first little while I am fine. I do not feel that I am hurting anything. It involves a period of time- maybe a bit over an hour- of holding the main handle with the left hand while holding down the power button with the right. I try a few fingers on the right and end up using my middle finger. All feels fine. Sure I can tell I am getting more tired as I go. My upper back starts to feel like it normally does after doing a posture like this for a while. I still do not feel anything out of the ordinary as far as my shoulders or arms go.

Then I stop.

I about dropped the thing to the grass, my hands had such bad tremors. I went over to pull the plug from the main power outlet, and I only had to grasp it. My shaking hand did the rest. I lifted my left hand to brush my hair out of my eyes (my left seems to be the worse off as far as this type of tremor goes) and I had trouble even getting it up to my face. My entire arm was shaking, and my hand seemed to be going on its own. Even trying to rest, it took a bit of concentration to let them rest enough to stop the shaking.

Even an hour later as I type this, it is not as easy as it usually is to type correctly. It is funny that the last few days I had started to believe I may not really have anything wrong with me after all. At least nothing as bad as I had worried anyway. It all seemed to be getting better. Then I had to go and push it a bit harder than I should have.

short update

2009-07-08T15:50:00.000-07:00

Well, I have not got much of an update at this point. It is interesting to me at least, that in a search for new information I could pass on out here, a search in Google brought up my own blog entries a number of times.

I had been doing pretty well recently as far as staying pain free. That ended last night with a sneeze. This was noteworthy because it popped my left shoulder in the area of my scapula. I do have slight winging on that side, so I am increasingly nervous about any new pain related to my left side in that area. Of course, no good sneeze anymore only jerks one part of my body. For the rest of the night, my neck and upper shoulders on both sides were very sore. I am not suggesting the sneeze as a cause of any ongoing problem, but it sure shows how something so simple can irritate an existing weakness.

Long before I noticed any problem with my right shoulder, I remember waking up on my right side in time to notice a POP in my shoulder that was followed by a noticeable settling. So, who knows? Maybe a sneeze could be the final thing that starts a new attack. I mean, I had been sleeping on my right side like that as long as I can remember, and have had no trouble. But with a slightly weakened shoulder, that pop could have been the start of that attack for me. Sites seem to suggest that exercise can bring on an attack. Maybe something as innocuous as a sneeze or simply sleeping could do it also.

Winged Scapula may need flashing “warning” lights?

2009-06-26T16:14:00.000-07:00

I, for at least one, am sensitive about anyone touching my affected right scapula. I am not sure why, or if this is common- but if anyone comes close to touching me, I want to punch them- Well, maybe that is extreme, but at least I want them to stop. It really does make me feel nervous.

Today I was at one of our local home improvement stores- just standing there, and suddenly, I felt something brush past me that bumped my right scapula. I had no idea it stuck out that far that this might be an issue. That is why I am considering getting a flashing light attached somehow. I am joking a bit. Come on everyone- It is called personal space. If you pass by someone close enough to bump their shoulder blade, you are too close. Of course, I guess mine must be an additional inch or two further out than anyone else. That is still too close. Maybe a red flag would do?

Short update

2009-06-24T10:43:00.000-07:00

I had planned to see my own regular doctor yesterday just to get him into the loop with my NA. I had not gone into anything with him before this since it was a workman’s compensation case, and I was still seeing doctors through them. But, I had not had a regular workers comp visit for over a year, and they had pronounced me stable, needing no future medical care (like they know) and all that other mumbo- jumbo that makes more sense to them than anyone else, so I thought I was in the clear to see someone else and get another opinion. Evidently, since the comp case is still open- whether I am seeing anyone now or not- my regular doctor cannot bill any services on anything that workers comp is still looking into. Until the claim is closed, I am in limbo about asking for any other guidance about it. I have waited this long: I can wait longer.

I hope that does not preclude me from trying to find out what caused this in other ways.

In my ongoing strength/weakness test of pushups, today I can do five, barely. And now I am shaking just typing this. It varies a bit day to day, but overall, the weakness is persisting.