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  There may still be the out of date information, but there are more places that HNA/PTS patients can go to talk to others about their own issues and how they deal with them.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.