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.

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.