Why is the shoulder the most common first complaint in NA

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

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

If you read the document (linked above), there are two things talked about which suggest a reason for the shoulder being the most common joint impacted with NA.  It begins with overall muscle loss, and ends with the efficiency of muscles to do work with impeded nerve connections.  The author first speaks of muscle loss, stating that

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

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

between 70% and the maximum of 100% is, as it were, ‘extra’ in case heavy exertion

must unexpectedly be made.”

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

Time passed, and one night I woke up on my right side and noticed that my shoulder popped, and collapsed a bit. There was no pain, just the sensation of settling that did not feel normal at all.  Why would this be important? Look to the document again. 

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

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

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

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

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

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

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

other nerves.”

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

“With neuralgic amyotrophy, the strength in the affected muscles is often decreased

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

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

(for example, 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

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

not possible to do that a number of times or to keep doing it for a specific period

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

are serious impediments for NA patients in their daily work, sports or activities at

home.”

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

Speaking of returning strength. . . Do not do as I did and force it to get better.  Heavy exercise prior to complete healing can lead to further nerve damage and make that nerve even more susceptible to further attacks in the future.

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

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

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

mechanism works well because the muscle can then again be completely controlled.

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

muscle can certainly provide maximum strength once but cannot maintain it well

or keep it up for long. In daily life, patients often notice that, after a time, they can,

in principle, carry out all of the movements with the arm, but that the arm becomes

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

they can continue with what they were doing.”

“If the nerve 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, for example, the arm after an initial period of painful loss of function will still

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

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

but also 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

From : [1] Information on hereditary and non-hereditary Neuralgic 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 explained totally by Neuralgic Amyotrophy. No other undiagnosed disease is necessary. It states 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 may not be complete, allowing for one use or maybe a couple, before having to take a rest. The stamina to have multiple “reps” of an exercise for example, is reduced. The muscles used fatigue very easily.  Maybe, this is what my neurologist was attempting to tell me a few years back. He just did so very badly.  This guy nails it. 

One other thing relates to balance (inner ear) function and hearing losses.  I have had a bit of changes to particularly my left ear. I have constant tinnitus. I have on at least two occasions had vertigo type sensations. One of those was with Nystigmus. Again, I thought these symptoms may be related more to other diseases than Neuralgic Amyotrophy. This paper explains that although it happens rarely, NA can impact hearing and balance. 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 causes and impacts of Neuralgic Amyotrophy, this one would be among the best. It has a lot of information and is very easy to understand.  I have included a permanent link in my Links section of the blog.  

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

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

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

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

More about Myasthenia gravis

Related to the Myasthenia Gravis possibilities, there seems to be a “stress component” to MG as it can be an initial first component 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 along that 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 everyday stresses can make you feel worse right then at the time of the stress.  Still, this is no smoking gun, as the saying goes. But it is interesting to me. 

Weakness continues

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

I still go back to the possibility that part of this weakness could be related to Myasthenia Gravis. But I know that what I feel is not text book for MG either.  Sure, I have had 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 seem small by comparison.  My eyes when tested, do not droop, and do not seem to suggest to doctors that MG could be an issue. But, 20 minutes into reading can make my eyelids shut down, and vision go double. 

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

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

It pays not to be Too sick-

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

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

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

Recently a friend went to a specialist who had offices in a building run by a local hospital.  They had gone to this doctor before and expected to be billed only for a regular doctor visit. No one at the office said anything different would happen. What did happen was they got billed for the doctor visit, and also for a facility fee by the hospital.  Long story short, the facility fee was twice what the doctor had charged.  For example, the doctor charged around $120 for a certain level of office visit. The hospital billers took that level of visit and plugged it into their 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 of supervisors, 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 totally since they had not chosen to inform patients that this change was happening, and they should have. 

Be careful of unexpected charges, or charges that seem excessive.  I wonder how many patients in this new hospital run group will just go ahead and pay instead of questioning that $200 plus facility charge?  Don’t be one of them!

Flu shot or not?

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

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

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

tremor causes shift to right hand trackball use and other updates

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

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

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

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

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?

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. . .

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

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

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

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

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

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"

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?

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

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

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?

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

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

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

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