Push-ups already gone again and balance issues resurface

Well, this was a very short-lived improvement as these things go.  Just now, I tried again to see if my strength was still at the level it had been when I wrote last. Nope.  I already could tell prior to the attempt that my strength was not there. I was shaky again. That seems to be the key here. If your muscles feel shaky just existing, it is not likely that they will have the extra required to do heavier exercise.  Back to a shaky 3 on this attempt then.

What else is in the mix? Well, through the last few years I have had episodes of dizziness, and vertigo associated with Nystigmus.  Generally, this is confined to nights in bed- specifically getting out or into bed.  Lying down is worse than getting up. But I have a bit of trouble walking straight after I feel I am OK to stand.  Lying back down can be quite exciting as well, and I am thankful that at these times, I have no place to fall to.

I see that I am not alone in issues related to balance.  It is a known that HNA sufferers particularly do have problems with the inner ear and hearing.  Again, it is listed as “rare”.  And again, I just hope that my doctors have not missed something I will eventually have worse problems with.

Some return of strength again. . . Push-ups coming back

For more than a year now, I have not been able to do any push-ups.  This has been due to my frozen right shoulder, and extremely tender muscles and tendons in my right arm/shoulder area.

The time had come a couple of days ago to see if this part of my arm weirdness had passed again, and maybe a bit of strength had returned.

A couple of days ago, I tried and I did 10 a bit shaky push-ups.  Compared to recently when I could barely hold my body in the position to try, I will count them.  Just now, I was able to do 15 with no shakes.  Maybe I am on the mend again. Do not let me over do this.  No need to get greedy and try to do 30 next.

14,000 page views and counting. . .

About a year ago I mentioned passing the 10,000 page view milestone.  Now this little blog is at 14,000.
Time flies when you are having fun?  I have to admit again, there are much worse afflictions out there to have to deal with.  I am fortunate that this one is simply a pain in the arm- or neck (or any other place) as the case may be.  The weakness is irritating.  It can be infuriating.  The pain can be debilitating.  I have been luckier than most with that.  My pain so far is easily managed.  I miss being able to do things.  And I miss being able to not think about how to do the things I can do before trying them.  But again, it is not the same as what many I know have gone through with, say cancer to mention one.  Other than the possible involvement with the phrenic nerves, there is little that approaches being life threatening about PTS/HNA.

When I started this in 2009, there was very little out on the web about HNA or PTS- at least as far as how it could impact people in real life.  Now it seems quite different.  There may still be the out of date information, but there are more places that HNA/PTS patients can go to talk to others about their own issues and how they deal with them.  If I have been any help to any of you, that makes it easier for me.

Good magnesium supplement article on Costco Magazine (of all places)

Here is a good article on magnesium supplements and benefits to the body of magnesium (many of which I have mentioned elsewhere). Costco Connection for Sept. 2013 is on-line, or you may have been mailed one by snail mail if you are a Costco member.

Of all sources listed for magnesium supplements, the one I used most recently is magnesium Glycinate. Another good one they say particularly for neurological issues would be magnesium L-threonate.  The Glycinate form can be had at health food or natural food stores that have supplements.  I have not seen the L-threonate form to my knowledge. I will have to explore a bit more.  For sure, I doubt Costco has anything but the most common form (magnesium oxide) which as I have said earlier on in this blog, can cause laxative effect which is the last thing you want if you are already deficient in minerals of any kind.

Edited and updated. . .  Costco, as I thought, only has magnesium oxide.  My favorite health food store in town where I had purchased magnesium glycinate in the past, has never heard of magnesium L-threonate. And even on-line, there is not a lot of information except from sellers of supplements.  With that in mind, since I am low on my supply anyway, I have ordered the L-threonate version from Amazon.  I will let you know how it goes.

Updated- Magnesium L-threonate may be good, but it is not cheap.  And it takes tree pills to reach a single serving size so it goes much faster than the single serving pills I can get of the Glycinate formula. I vote for Glycinate if you need a magnesium supplement.

Off-Label uses for Gabapentin-

I had stopped taking gabapentin to check pain levels, and found that there was no longer the pain I had previously.  I decided to stop for a while. No need to keep taking it if the pain was not there, or so I figured.  

A couple of weeks after stopping, I noticed that I was shaking again.  I had not really thought of it, but my shaking had diminished while I was on gabapentin.  I started it up again, and within a few days the shaking had diminished again.  My tremor had also subsided a bit.  Further research on Gabapentin revealed that so called “off label” uses for gabapentin show a reduction of spasticity in multiple sclerosis. 

As seen, spasticity relates to muscle tone problems causing tightness and inability to relax muscle groups, related to repeated damage to myelin sheaths of nerves.  So, either it is also helping the tightness of Neuralgic Amyotrophy myelin sheath damage, or I have something else going on.  

Shoulder update

It appears my physical therapy has ended for now.  I have reached Medicare’s hard cap for therapy for the year evidently.  I am lucky I suppose that most of my issues with my arm have resolved favorably.  I have real good range of motion, even if my strength is still way too low.  Gabapentin helped me reach this. If I had not started taking this, I doubt I ever would have made such improvements in range of motion.  (As of now, I have stopped taking gabapentin as pain has gone away).  Actually, D3 helped also.  Or it may have been a coincidence that shortly after starting D3 supplements, my stamina improved enough to begin some light exercise with goals of improving my strength.  Neither of these helped enough to get me to think in terms of even a short term recovery from NA.

Those sites that suggest that recovery is an easy thing for PTS/HNA are still wrong, at least as far as my case goes.  I am still weak, especially in my lower back.  My arms seem a bit stronger now, but not to any noticeable degree that would allow multiple reps of an exercise with weights.  My therapist is interested in following my case at least as much as allowing me to briefly drop by to fill him in on my progress and get new exercises.  I figure that I saved Medicare as much as $20,000 by use of PT to get use of my shoulder back. Nothing says I would not have problems in the future even with successful shoulder surgery now.

“Low-D” update

I have been taking a daily supplement of vitamin D for the last couple of weeks, and there are early indications that this 5000 IU daily supplement is helping a number of issues that I had earlier attributed to NA.

The biggest thing is the reduction of nerve/muscle fatigue.  During my regular physical therapy sessions, I had been asked to exercise using an arm exercise style “bike”.   This is on a machine that has an arm crank that you turn using different settings to achieve goals of reconditioning your upper arms and shoulders.  While initially doing this exercise prior to my taking the D3, I had trouble turning this for more than a couple of minutes with very little to no resistance.  As the Borg would have said, “Resistance was futile.”  A couple of times I had to stop before reaching the preset goal of only ten minutes, and it felt extremely hard to go past 5 minutes.

Now since taking D3, the last few times I have had no sensation of fatigue in the early going, and this is with the settings now on what they call “constant work.”  This setting really is weird in that if you maintain a certain speed you do not really feel the resistance. If you go too slowly, the resistance sets in.  But the key is that you have to go faster. Before the addition of vitamin D supplement, when I finished the 10 minutes, I could usually end up around 1.0-1.1 miles on a good day and usually in the .9-1.0 mile range, with no resistance set.  Since the addition of vitamin D, I have been regularly hitting 1.3-1.4 with a high of 1.5 miles using resistance setting as constant work.  And at the end of 10 minutes, I now feel as if I could go on for a longer time.  It is true that I feel like my muscles are getting tired during this, but I can tell that they recover while still exercising and the strength is not negatively impacted.  This has made a real difference in my physical therapy.

My therapists had been concentrating on having me do stretching exercises and including the exercise bike if my arms would tolerate it.  Now my therapy is being geared to a more active use of my arms.  Instead of passive stretching, I am actively using my arms within my achievable range of motion with a ling term goal of increasing strength.  This is closer to what my arms would be doing in the real world.

A few days ago, I also tried to do a pushup.  I was not successful.  My shoulder still has too much pain with certain actions.  But my left leg feels stronger at my hip, and my right leg just above my ankle is much stronger when driving around town.  That had been getting worse and I had been getting a bit more worried that my ongoing weakness would impact my ability to do necessary driving; like to doctors for me and my significant other, grocery shopping, etc.

"Could it be low-D? " (Vitamin D3 that is. . .)

Long time readers will remember how I have often wondered if my weakness, tremors and all other weirdness that did not quite all jive with my understanding of HNA were really a part of that illness or some other odd thing a bunch of doctors may have missed. . .  Well, it may well be something the doctors missed that was caught by my Physicians’ Assistant.

In a routine (yeah, like a $2,000.00 test can be routine) MRI of my neck looking for source of arm pain, in an aside, the pathologist said it looked like I might have a small lesion on my parathyroid.  Hmm. On my parathyroid?  Yes.  Well, my thyroid recently came up with a nodule that is benign and thyroid function was normal.  So, my PA ordered a test of parathyroid which was off the charts high for PTH, but showed normal for calcium.  Before the lab had a chance to get rid of the rest of my sample, he ordered a vitamin D test, which showed extremely low vitamin D.  What does this mean?

Well, the parathyroid regulates calcium and phosphates and is linked to vitamin D levels.  I am lucky that my case of hyperparathyroidism seems (so far anyway) to have been caused by low vitamin D. If this is true, I should be able to reverse it with additional supplements of vitamin D.  How does this relate to my weirdness of tremor, weakness and muscle fatigue?  Evidently, low vitamin D not only can cause  secondary hyperparathyroidism, but it also contributes to muscle weakness, tremor, fatigue and even in adults some risk of malformed bones- maybe like what is happening to my pinky of right hand.  The cause of D deficiency varies, but leading culprit is long term vegetarian diets and lack of sun exposure.   If you are worried about sun, use blockers. If you do not eat much red meat or eat other things that have no D3, use a supplement.

I will let you know if the supplement works.

Updated- Yes, the vitamin D supplement has done its thing.  My PTH is now in the normal range, and this is also true for vitamin D levels.  Overall I feel a bit better, but no where near anything approaching normal.  It is one less thing to worry about though. . .

To gabapentin or not, that is the question. . .

Gabapentin, aka Neurontin, was developed to treat epilepsy and currently is being used to treat certain types of neuropathic pain.  It is the neuropathic pain that interest me, since I have had ongoing aching pain in my right arm since the most recent attack of NA last summer.  My doctor suggested that Ultram or others like that may be beneficial, but I have tried Ultram and Ultracet (Ultram and acetaminophen mix) previously and they have no impact on pain ongoing and usually cause me to have sleep disturbances on top of being ineffective.  Gabapentin seems to keep me pain free for the most part through the day.

I say ‘for the most part’ because I am taking the lowest dose for now of 300 mg per day. The recommended dose for me was 900 mg per day, with a ramp up to that dosage over nine days.  Note that if you take this drug long term, discontinuing dose should be done equally as slow over time.  I find that I get relief with the one a day, but it still allows spikes at this low dosage.  For my case, I want to know the thing causing pain is still there.  I know some may still feel spikes at the higher dosages.  As the car ads say, your mileage may vary.

For me, I am in less pain.  I am sleeping better.  My physical therapy is easier to take because I do not have to fight against the nerve pain to stretch my arm, thus regaining range of motion.

You really want to be careful with this drug though.  Some may not have any relief.  Some may find that it alters mood particularly at higher dosages.  Keep track of any changes you experience and keep your doctor informed.  Here is more info describing gabapentin and potential side effects.

Reinventing the wheel – Back to step one of diagnosis?

Regular readers should remember my history.  Actually, it is the same as most of my fellow NA/HNA/PTS (call it what you will) sufferers.  It takes forever sometimes to get a diagnosis of this kind nailed down.  I have had countless tests over the years that seem to suggest a diagnosis of Neuralgic Amyotrophy, and some doctors have agreed it is probably the hereditary version.  That is the diagnosis I have had since 2007 after my winging scapula, and it has been suggested that the prior problem with my right hand was an earlier flare of the same thing.  I have also determined on my own, that I have had a number of previous possible flares dating back to around age 12.  Fast forward to today.

Well, actually starting the end of last summer to be precise. . . I had a few weeks of pain very similar to prior episodes.  One might think that by now, I would be a pretty good judge of how this manifests itself.  But each doctor seems to have to reinvent the diagnosis.  I have told my current and still relatively new doctor about this possible flare up.  I have given him information about the disorder, namely the St. Radboud pamphlet referenced in my links section. My current arm pain resulted in a bit of a loss of range of motion since the episodes of pain lasted a long time, and resulted in my loss of some arm strength.  That pain is ongoing.  He has done an MRI of my shoulder to rule out orthopedic causes, and there does not seem to be an orthopedic cause for the arm pain.  Now, since I have pain after months of Physical Therapy and recurrence of arm weakness with that pain, he seems to think it could be due to problems in my thoracic spine.  I told him that I had an MRI of my neck years ago which did suggest I had some mild disc degeneration, but not at sufficient levels to cause the pain I had back then.  In a funny Déjà vu, he suggested that if the MRI rules out an orthopedic cause for my ongoing pain, that he would suggest that I see a certain doctor in town.  He mentioned the name, and it is the same doctor I had seen years ago who thought I had muscular dystrophy.  I said I was acquainted with him, and he asked how my relationship was with this doctor.  Well, it started out good, but when I called to ask him if he would see me for pain issues when I had still had better insurance, I was told he did not want to take the case.  Any reason why?  No, they just were not interested in seeing me again.  I guess I would have to see someone else if it comes to that. . .

Anyway, I guess it is OK to rule out things that may not be known, but I have a diagnosis that is of a disease for which there is no cure, and people do not generally get better. Even in types of NA that do not repeat, full recovery to prior level of function seems to be rare.  In my case, I have a form which repeats.  In those types that repeat, you have even less chance of full recovery of prior function.  And in my case I have ongoing weakness and periodic bouts of pain.  This has gone on most of my life.  Sure, look at other stuff if you have to. But the diagnosis is what it is.  There are certain aspects of this that do not change; at least not in my case.

But you still do not look sick. . .

I have posted about this link (Funny, you do not look sick- Spoon Theory) previously.

I hear this quite often, and it is true. I really do not look as bad as this can feel at times.  I find I have to keep reminding some people anyway, that just because it appears I am OK does not mean that I am totally fine.  On the contrary, I am not fine, and it really appears at this point that any recovery I may have now, or at some future speculative date, will only be a partial recovery at best. And probably will not last very long.  I hope I am wrong.

This is a common problem for many with a disease that makes one just feel worse than they may look to the untrained and some trained eyes as well.  There is an acquaintance of mine, who has spoken to others about my condition saying to the effect, “I do not get this.  He looks OK to me. What is up?”  Even my current Physical Therapist who has had a prior patient with PTS/NA and knows at least some of the limitations, had appeared to forget recently that I may not be up for any exercise right now even of a fairly low-key type.

I had to re-explain to him that my muscles do not respond at this point, to any physical “training” that other PT patients may be expected to do at this stage of treatment.  I told him that there may have only been one time in my life when my muscles really felt normal, and that at that time it all felt so good to me that I over-exercised and set my recovery back quite a bit.  I mentioned that currently my body feels extremely shaky with almost all movements.  True, there are some days it is a bit better, but overall it is way out of any normal muscle response to exertion.  All my muscles fatigue easily.  What I can do is limited by this fatigue.  They warned me my muscles may feel stiff after exercise.  I said I really doubted that since to be stiff, they would have had to do some work- beyond what the basics of my mobility currently.

I think that maybe now they get it.  I hope so anyway.  I may be the last PTS patient they see in there practice, but I am there now.   There are things I just will never be- and one main thing is, that I will never be muscular to any normal degree.   I no longer seem to be wired that way, if I ever was.

Life with Hereditary Neuralgic Amyotrophy

Day to day, living with PTS/HNA is not really so bad.  But, it can be limiting.  I can do stuff, but only for a while before the muscles just fatigue and say “NO MORE TODAY.”  My Phrenic nerve is still OK, so I think that makes a bit of a difference.  I understand how limiting it could be if I was tied to an oxygen tank for any time of the day.  Or just to feel constantly as if I had to use all my energy simply to breathe.

I have often wondered if I really had HNA, or if I was just unlucky as far as having a case of PTS that repeated for its own reasons.  Over the years, I have begun to accept that even if I have no other PTS related cases reported in my family, I can still have HNA.  My case is really not as severe as some I have heard about.  Maybe other cases that may be in my family were just not severe enough that they were caught and diagnosed by a legitimate doctor.  I have some suspected reports of weirdness in my family that suggests a possible related type of syndrome as PTS.  Maybe that is enough. Then there is my own history; that if I look back far enough and with the knowledge I have of HNA now, maybe my history also suggests a diagnoses of HNA is the correct one for me after all.

First, I have always been for lack of a good descriptive word, small.  My legs were OK, and I made some good use of this from an exercise standpoint by riding a bike as much as I could to get my lungs into at least fair shape.  I think that has continued to put me in better shape now even though I no longer feel safe to ride.  My upper body just never responded to any sort of exercise program.  I could do exercises, but only a limited number before my muscles just gave out.  I wondered about this at the time, but figured it was just normal for me.  Twenty pushups seemed to be my limit for whatever reason.  Certain other arm related exercises escaped my ability entirely.  Pull-ups?  Nope, not until much later and even then I was limited to only a couple.  Rope climbing?  Surely you jest.  I could not even think how to do that with my limited arm strength.

Others in my PE classes may have started out as I did. But they grew stronger with the work.  I stayed the same, or grew so slowly in strength that I was rapidly left behind.  I began to just know that there were things everyone else seemed more able to do that I could never hope to accomplish physically.

It was not just this memory of having lacked muscle strength in my early years that I am remembering now.  I know that I had periods of neck and shoulder pain even back as far as the 6th grade.  I have memories, and others from back then have told me they were aware of the fact that I had periods I was in a lot of pain.  Some of the shoulder pain was centered on my scapulas.  This sort of shoulder pain repeated many times from those early years to my now documented attacks of NA.  So, it appears I have had a long history of pain and weak or slow muscle growth that I now think of as being caused by HNA.

Any physical activity now is even more limiting.  I worked in the yard today for an entire hour and a half.  It may have been less time than that.  I had a clean-up job to do. It did not involve heavy lifting, but did require a bit of kneeling down and bending over followed by standing again.  The muscles worked for a while.  Getting down was hard from the start.  My legs shake all the way down.  Standing is a bit easier.  What hit me eventually was my lower back.  This low back muscles start to fatigue and I know I better finish up because my time is now limited by the ability to stand at all.  Luckily, the size of the cleanup was such that I could do it, and finish before my muscles just gave out.  People tend to misunderstand at this point, because they can work long enough to actually get a sore back.  Nope. For me it is not about pain as I live with HNA.  The acute periods of an attack surely have the most severe pain I can think of. But ongoing, it is about muscle fatigue and weakness, and also about feeling good that I can even work for an hour or so doing limited work, but at least working.  And no, it would not help to exercise what I do not have to exercise.  That, as I have learned from experience, can cause more problems than it seems to help at the time.

Physical Therapy is working- Shoulder is "thawing out"

Well, with the help of physical therapy three times a week and stretching on my own in between appointments, I am slowly getting range of motion back to my right arm. I am sure the orthopedic doctor who gave me the shot of cortisone will be disappointed at that- assuming I do go back to see him.  What I have found is that the muscles of my shoulder had allowed it to get into a position that stopped it from moving to normal range of motion.  With concentrated effort to move my shoulder prior to stretching, I was able to get it past the previously frozen limits to some extent.  And my Physical Therapist has been getting it to go even further in the manual stretching portion of the treatments.   It is slow progress, but it is working out of it.

Now a frozen shoulder and cortisone inspired hiccups

Towards the end of last summer, I had written about a possible flare. This caused enough shoulder pain that I tended to avoid use of the arm for a while.  I did not really think it had been long enough to cause any problems, but as the first pain subsided a bit, I realized I had lost some range of motion.  I tried to stretch, but by this time it was too late. Now the right shoulder was a bit frozen.

Here are a few things to avoid in the case of future flare-ups. I have to try to remember them myself.

If the pain from a flare is intense enough to cause reduced use, you have to do passive range of motion exercises to keep the shoulder limber from the start.  I am not sure why I forgot about this. It is how I had treated my fingers long ago.

As soon as possible, and as soon as you can stand it, try to do active range of motion exercises.  It may hurt to do so, but it hurts more if you let the shoulder freeze on you like I did.  Now, you may not have the same issues I do. From both MRI's I have had over the years, it has been mentioned that I have a downward sloping Acromial space. This means for me, that the space between the end of the collar bone and scapula is smaller than the norm. This makes me susceptible to impingement disorders. And that may be what I have been dealing with for the last few months.  And, I could have made things better if only I had kept moving.  

Speaking of moving, I have been to a physical therapist recently who actually has treated patients having PTS/NA in the past. I think he really gets it, and I am happy to have been directed to him.

Also, I have been given a shot of cortisone by an orthopedic doctor who really did not get it at all.  I had filled all sort of paper work out explain about my history with PTS/NA.  His first words were, “Well, how did this happen? Were you doing some painting or tree removal?”  Me- No, I really have not been able to do stuff like that. I have Neuralgic Amyotrophy.   Him- “What is that?“    Me- You may know it by its other name, Parsonage Turner Syndrome.   Him-  “Well, that is self limiting and people get better and get immunity to further attacks.”  At this point, I should have run away very fast. Immunity from PTS is nothing I have ever heard of.  I told him of my first two documented cases, and that I know that what started this most recent attack was the same pain in the same part of my shoulder that it has happened the first two times.  The weird thing too is that he is in the same medical group of my original hand doctor who told me I would never recover hand function without surgery.  I told this doctor about that and showed him that my hand was in fact better without surgery.  He then did a short exam and about pulled my arm out of the socket trying to see if I was faking how locked up it was.  Or maybe he thought he could do a quick snap move like a regular chiropractor may have tried.  He also was quick to mention that if I could not get it to free up, that surgery would be needed to fix it.

Surgery.  Hmm. I have not heard much good coming from shoulder surgery.  I am not sure how it would be for me anyway since I am prone to entrapment issues.  Fix it this time, and next time it is going to be worse no doubt.  So, on to the shot.

The shot itself was no big deal.  And it feels like it may be helping me to regain some movement.  I wonder about side effects of cortisone that are not mentioned in the main websites- at least not that I can find.  They mention that it can send your blood sugars through the roof so be sure to tell your doctors that you are diabetic if you are.  It can also make you jittery, as they mentioned at my appointment.  What no one talks about is a possibility that the shot can give you hiccups that can last a couple of days.  For me, I woke up the morning after the shot hicccupping, and it kept up most of the day except for just a few brief breaks.  It seemed totally out of the blue.  A friend asked me if they could be a side effect of the cortisone.  I said, not that I knew about.  But Googling “hiccups after cortisone shots” verified that it happens to many people. And to some who have to take the shot long term, it happens every time they take the shot.  I have no idea why, but I will ask.  Very odd.  I was lucky my own case only lasted the one day.  It was about driving me crazy after a full day of it.

Update: I see on Web-MD that Oral Cortisone is listed with hiccups as a possible side effect.  Not that I had the cortisone orally. . .

Is it really Anterior Interosseous Nerve syndrome, or just a more rare type of Neuralgic Amyotrophy?

PTS/NA can cause symptoms that are exactly like Anterior Interosseous Nerve syndrome (AINS). I know this because I had this diagnosis originally. When my fingers suddenly could not flex to make the traditional “OK” finger gesture, it followed a month or so of arm pain and weakness. At the time, I was told I had a textbook case of AINS. But during all of my exams, no one could tell me why I had AINS.  They kept asking me about the pain in my forearm, which I did not have.  I kept telling them I had pain in my upper arm and a bit in my shoulder. At the time I had checked the known causes of AINS, and found that none of them seemed to match my case.  But, what else could it be?

 Eventually, the other shoe dropped and my diagnosis was altered to PTS/NA and I realized that nerve damage that PTS causes can be misdiagnosed as AINS. That had originally been the reason for this post. I had recently noticed some who had been diagnosed with PTS/NA reporting that they had now also been diagnosed with AINS and now have to worry about two rare diseases. And in some cases surgery had been suggested as a cure.  I had found this article which designates the names of at least some of the nerves impacted by NA.  Notice in the anatomy section the mention of the anterior interosseous nerve

http://wiki.cns.org/wiki/index.php/Neuralgic_Amyotrophy

“Description
Neuralgic amyotrophy is also called Parsonage-Turner syndrome, brachial neuritis, and brachial plexitis. In response to bodily stress (e.g., surgery, flu, unusually excessive exercise, post-vaccination), the brachial plexus, branches of the brachial plexus, or other upper (rarely lower) extremity nerves may develop idiopathic inflammation. The exact cause is unknown. This inflammation is quite painful, which limits use of the arm. As the pain slowly resolves over a few days or weeks, the patient now notices paralysis and a variable degree of numbness in the shoulder and arm. The amount of paralysis varies, with unusually severe cases having complete arm paralysis. Weakness and numbness slowly resolves over time. This may take many months, or even 1-3 years. Although most people improve, the arm may not return to normal and remain partially paralyzed. Brachial plexitis may involve nerves controlling almost any muscle; however, nerves to the shoulder, scapula, and forearm are more commonly affected.

Anatomy
The following nerves may be affected (unilateral or bilateral): brachial plexus, long thoracic nerve, anterior interosseous nerve, posterior interosseous nerve, suprascapular nerve, lumbosacral plexus, and others).”

I hate to see anyone go through surgery that would possibly not be needed or even be an answer for the problem being experienced if there were a viable alternative that may help, namely just to wait it out.  If you have a case as AINS, and do not have the typical causes in your history, it may be caused by PTS/NA.

Well, then I just found this suggesting that maybe doctors have realized that inflammation of the nerves can cause AINS in a similar way as PTS.  See the link here:

http://en.wikipedia.org/wiki/Anterior_interosseous_syndrome

“Most cases of AIN syndrome are due to a transient neuritis, although compression of the AIN can happen. Trauma to the median nerve have also been reported as a cause of AIN syndrome.
Although there is still controversy among upper extremity surgeons, AIN syndrome is now regarded as a neuritis (inflammation of the nerve) in most cases; this is similar to parsonage-turner syndrome. Although the exact etiology is unknown, there is evidence that it is caused by an immune mediated response.
Studies are limited, and no randomized controlled trials have been performed regarding the treatment of AIN syndrome. While the natural history of AIN syndrome is not fully understood, studies following patients who have been treated without surgery show that symptoms can resolve starting as late as one year after onset. Other retrospective studies have shown that there is no difference in outcome in surgically versus nonsurgically treated patients. Surgical decompression is rarely indicated in AIN syndrome. Indications for considering surgery include a known space-occupying lesion that is compressing the nerve (a mass) and persistent symptoms beyond 1 year of conservative treatment.”

Notice it says in most cases it says that surgery would not be indicated for most AINS cases now a days, and outcome for surgery rarely improves the outcome of just waiting.  Unless they can be relatively sure there is something to decompress, you may be better off just waiting.

Sometimes a nodule is just a nodule- back to HNA/PTS discussions

After a biopsy (close to $3,000) which was inconclusive, and a CT scan at around $950.00, it has come to light that the nodule in my thyroid is benign.  Both of these tests, plus around $800 for blood work, are things my old insurance would have not helped much as far as payment- and as such, I would have declined them.  At least now, I can know for sure it is OK to not do anything right away and to monitor the growth over time, for unwanted or unexplained growth.

So for now, I can get back to concentrating on the HNA question. I think it is really a done deal as far as the hereditary part of the NA.  I have clearly had another attack at the end of last summer concentrated to right shoulder as far as worst symptoms go.  This was alluded to in recent posts, and right now is better overall as far as pain goes, but still I have lingering pain in right shoulder, and have to at times use left arm to support the right in daily use.  It was/is clearly nerve related pain, responding to prednisone long term, but not even touched by any amount of ibuprofen. Sleep is an issue again.  Any time on my right side results in pain that wakes me up.

Weakness continues, but it is not quite as bad as it can be.  I really can not even think of trying push-ups until my right arm recovers a bit. Also with this new attack, I am having a bit of vertigo and nystigmus at times. In the past I also went through a short period of this, and it passed eventually.  This time, it is a bit worse and the lengths of time of the "spells" seems to be longer. It makes me wonder again about other possible issues, but I also know that HNA can produce periods of vertigo. And I know that others with HNA have reported dizziness at times.  I will just have to be more careful until it gets better.