“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.