Classic relapse and remitting HNA-

And, I am better.

I had a brief drop to around 80 pushups, and have since slowly worked back to 100. And since then have pushed the count up to 110 again.

I definitely feel this is classic presentation of HNA relapse and remitting attack pattern. I had a quick onset of weakness with no pain, and a comparatively longer period of recovery. So far, it is too soon to say if it is a complete recovery, but i feel just as i had prior to the attack; although strength is nto quite returned to normal.

I also think my ability to exercise prior to this attack helped me overcome any long lasting impacts of the attack.

All things must pass . . .

I know I have been gone for some time now. There was not much to say. I was in a stage where I could exercise, and I felt great. Now, things have changed again.

For the last two years in fact, I have been able to exercise effectively, going from very few pushups originally, to a high of 130. And for about the last year, that amount has averaged above 100. Now, well- I am in a bit of a downward slide.

It started with a bit of shakiness in my lower back and thighs. But the pushups were not impacted at that time. Then pushups dropped to 100 for the first time in a year. Then I did 100 one more time, but it was not feeling good at the end. The next time I was down to 95. Look at him, complaining he can only do 95 pushups. Ah, but the next day it had dropped to 87. Muscles don’t feel right after exercise. It takes way longer to recover from exercise.

I hope it turns out I am worrying about nothing.  I still feel good. I have no pain. And usually, an attack of Hereditary Neuralgic Amyotrophy starts with some amount of pain. Maybe I do not have pain because I had been exercising? Could be. But, pain doesn’t always occur in attacks, anyway. It could also be that I will not bottom out as weak as I did the last time. That had been a major attack, with pain.

Avoid long term magnesium use- Push-ups now up to 40?

For those interested in my magnesium use, it would probably be best to warn you to keep it at a minimum, ongoing, or stop it all together as soon as you can do so.

In fact, I had stopped my magnesium supplements from time to time, only to restart when I felt suddenly worse overall. Now, I have no plans to ever use it again.

My primary doctor agrees that anyone with a neuromuscular disorder should limit use of magnesium or any other long term muscle relaxer. There is, as it turns out, a possible long term use detriment.

My own update as far as strength is this: Last night, and again earlier today, I did 40 pushups.

Yep. That is still a bit hard for me to believe, since at the height of my magnesium use, I almost never did more than 5 at any one time, and 5 was a hard stretch.  
 
Now, the 40th one is a hard stretch. But it is 40!!!! When did I ever do 40 push-ups in my life? Never, that I can remember. So much for my friends suggesting that I was unable to do push-ups because “We are just getting too old. Face it”.

Four months in, and still going strong- minus the magnesium

I still have been doing better- now four months after stopping the magnesium supplements. It is true they helped in the initial time after my attacks, but ongoing, they only made me worse.

Push-ups have remained in the 15-20 range, so my overall strength is still limited to what is available with this disease. But, I feel much healthier without that supplement.

Two months in- still going stronger

Two months in- still going stronger

I am still doing better after just short of two months since stopping the magnesium.

My breathing is much improved, especially at night. My general strength is improved.

Pushups are generally averaging around 15-20, with 25 to 30 on rare occasions. I am not sure why this discrepancy in amounts exists. It could be due to the time if day I attempt the pushups. I still take a multiple vitamin daily that has a highly absorbable type of magnesium. And I have noticed that if I take a day or two of my old magnesium supplement, my pushup total and breathing suffer.

This link to magnesium impacting my strength and breathing is troubling. It must mean something, but I am not the one to guess what. 

Pushups return, and did magnesium cause weakness?

Hi again to anyone that sees these posts.

I have been absent. Other things take precedence, at times. One thing I have talked about in the past is that magnesium has helped me, at least during and right after the attacks. It, for me anyway, helped to tone down the twitches and leg jerks that I had. I am going to suggest now that you watch out about taking it long term. Do breaks from it from time to time, to see if it is still helping or like I think happened to me, started to cause me more harm than good.

I have talked about my ongoing weakness. Some HNA sufferers report ongoing weakness and breathing difficulties. I had all of that. I never even thought about it at a certain point. It had become part of who I was. The weak guy over there who sits around while everyone else moves on with their lives. That was me. Maybe you are that person too. Or maybe you know someone like that. 

Since my attack, I have taken magnesium religiously. I have taken my own advice from time to time, and have stopped it for a week or two, until I would start to feel those familiar twitches start up again. Or I might feel tightness in general as my muscles tensed up. Magnesium is good to ease those things. It made them go away for me. And I could never stop taking it for long. It did seem to help. But, I had no idea that it also could be adding to my weakness even at the dose I was taking. I had no clue until the most recent time that I stopped.

It has been about a week now since I stopped my morning magnesium pill. And I feel so much better now. I fell less shaky in just doing everyday tasks. My breathing has improved. A couple of days ago, I tried to do some pushups. And I was amazed that on the first try, I could do 10.

Those 10 pushups were a bit shaky, but I was amazed that it was 7 more than I had been able to do for the longest time. So a half hour later, I tried again and did 20 with no shakiness. A half hour later I tried again and did 20 more. The next morning I did 15 and a bit later did 25 more. And now, for the first time in a very long time, the muscles in my arms are actually sore from that exertion. It feels amazing. I have to admit, I thought my doing any sort of exercise ever again, was a pipe dream. I felt like I was aging in an accelerated way with this disease to blame. And now I feel like I have part of my life back. Maybe because that magnesium is getting out of my system.

I know it has its place. I may use it again if I am in an attack. But, I feel like I will never just blindly take it just because I think it has helped in the past. After a while, at least in my experience, that help goes sideways and becomes more of a hindrance.

So, take it but watch out for possible problems of long term use. It might make you feel better at first, but it also can have opposite impacts in the longer run.

And maybe, it is all a coincidence and at some point my return of strength will go away, magnesium or not. 

I will let you know.    .  

A short update, and new issue- Hypoventilation in Neurologic diseases

By the way, since it has been a while since I have done anything here, this is a short update. . .

Overall, my strength is still a problem. I can do 3 push-ups, barely. One further issue with the push-ups is that my right wrist is not up to the challenge even if my shoulders were. That wrist has been a weak point all along, and seems worse now.

My legs tend to go through weak times as mentioned earlier. Currently, they are not too bad, and I can walk further and faster now than at other times recently.

Hypoventilation in Neurological diseases

One issue that seems to be a rare thing for HNA, but can occur, is an issue with breathing. In general, this is only a problem at night when I sleep, or at least try to. Since the last updates, I have had a pretty severe problem getting good sleep. I had an initial O2 saturation study done as I slept, which determined that I had several periods of desaturation during the night. A very expensive full sleep study followed, which was inconclusive, except for a suggestion that my periods of REM sleep were shorter and less frequent than normal. I think I had trained myself to avoid REM sleep because I sensed I could not breath as well during it. I think the doctors were looking for standard obstructive sleep apnea, and my case did not suggest that, so they stopped looking into it. My sleep returned to normal right after the study. Go figure. It is like research into electrical problems in cars. They are a problem for you because you drive your car all the time. When you are at a mechanic to get it fixed, the problem can't be reproduced for them to diagnose the cause, or to fix it.  

See this link for more on breathing issues and neuromuscular diseases

http://emedicine.medscape.com/article/304381-overview

“Neuromuscular disorders

Neuromuscular diseases that can cause alveolar hypoventilation include myasthenia gravis, amyotrophic lateral sclerosis, Guillain-Barré syndrome, and muscular dystrophy. Patients with neuromuscular disorders have rapid, shallow breathing secondary to severe muscle weakness or abnormal motor neuron function.

The central respiratory drive is maintained in patients with neuromuscular disorders. Thus, hypoventilation is secondary to respiratory muscle weakness. Patients with neuromuscular disorders have nocturnal desaturations that are most prevalent in the REM stage of sleep. The degree of nocturnal desaturation is correlated with the degree of diaphragm dysfunction. The nocturnal desaturations may precede the onset of daytime hypoventilation and gas exchange abnormalities.”

Hereditary Neuropathies of the Charcot-Marie-Tooth Disease Type

Since I had been curious about a link between HNA and CMT Disease, here is one other site that discusses what that link entails. This article is over multiple pages on the site, and is a bit too technical for me to understand fully. But, this and other things I have discovered do suggest that HNA is at least related to CMT disease. It may not matter in the long run to most of us, but things like this are of interest to me, as a curiosity at least.

http://emedicine.medscape.com/article/1173484-overview

“In some hereditary neuropathies discussed below, focal asymmetric features (eg, hereditary neuropathy with liability to pressure palsy [HNPP]) predominate; in others (eg, certain cases of Charcot-Marie-Tooth disease type 1A (CMT1A) and inherited brachial plexus neuropathy [IBPN]/hereditary neuralgic amyotrophy [HNA]), proximal weakness predominates. Typically, a predilection exists for distal limbs as the site of disease onset and more severe symptoms and signs. Furthermore, while significant variation in nerve conduction velocities exists between and within families, this parameter does not predict severity, with the exception of the very low (ie, < 5 m/s) velocities observed in Dejerine-Sottas syndrome (DSS) and congenital hypomyelination neuropathy (CHN).”

Catching up on me and where I have been recently

This all goes on and on and on. I used to hold out hope that maybe I would eventually get some relief from the weakness. I know now that this nerve fatigue caused weakness will be with me for the rest of my life. It has gone on too long to hope that strength will ever return, even in a minor approximation to what I used to have, or even what may be normal for someone of my age.

A couple of months ago, I had tenderness in the right side of my neck, which quickly seemed to spread weakness down my right arm again. This followed the now more normal feeling path down my body and into my left leg. For a few days I had to swing my left leg a bit more than normal just to approach a normal gait. I took prednisone (10 milligrams a day) for a bit more than a week. During this time I was very shaky, and finally got some relief of that by resuming magnesium supplements.

Things are a bit more stable now, but I get fatigued much more quickly than ever before. If I push that and try to work through the fatigue, it almost makes me feel sick to my stomach. I know it is a reaction to the stress my body is feeling, and there is no reason to actually physically get sick, but it feels that way none the less. The only way to make it better is to rest.

That is perhaps the worst part of this disease for me. It is that it makes you feel like you are not worth anything. I do what I can physically do, and then I have to quit. I have to quit and then hope that those around me will understand why I have to stop working.

I know that my body has not ever been what most people would have known as being close to normal strength and endurance. In that, I feel like I was cheated out of a normal life.  And that makes me feel bad too since I know that there are others who have had it much worse with their lot in life than I ever had. I have no reason to feel this way. I am still alive.  No part of this will ever kill me. I only miss feeling like I was normal in even a small way. I miss that when someone I love needs me to help them, that I am limited as far as what help I can provide. This can wear you down after so long, even knowing that it is not life threatening, and knowing that there are those people in my life that try to understand, and who do not judge me based on my inabilities.

And more push-up stuff

In the last week or so I have found that I can do between 10-15 push-ups every 2-3 days.  I am definitely not pushing myself this time. And I have not been able to increase the count past 15. I guess that is one thing about HNA. There definitely is not any muscle growth past what you have at any given time.  I am only trying every 2-3 days. I will not do this every day for anything. I have already seen how over exercise does not work in the long run.

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.

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.

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.

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.

Legs and minor return of strength

Yesterday I mentioned my legs felt better.  At the same time I noticed that there was a bit less shakiness in them. It has been easier to kneel down and get back up.  This being true, I wondered what the old push-up test would suggest.  The last few times I have made attempts, I have only been able to do one or two, and those have been iffy.  Yesterday, I could do ten.  They were not the best because my right arm is still a bit funky, but I managed to do them and generally felt OK during them.   It is interesting how the return of strength relates to cycles of diminished pain, particularly in my legs.   By the way, ten yesterday is all I am interested in now.  Maybe in a week or so I will try again.  But even if I do not, I can tell when my legs get stronger or weaker what part of the cycle I am in.   I sometimes wonder if anyone seeing me out around town wonders why some days it appears I can barely walk, and other days I am walking fairly normally.  This is truly an odd disease.