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.

How many pushups should you be able to do?

I was never much for physical activity when I was young. Don’t get me wrong. I tried. I was just always behind my PE classes. My muscles would not respond to being pushed. I was lucky if I came out at the average according to the numbers on this chart, courtesy of Physical Living- http://physicalliving.com/how-many-pushups-should-i-be-able-to-do/

Push Up Test Norms For Men

Age	17-19	20-29	30-39	40-49	50-59	60-65
Excellent	> 56	> 47	> 41	> 34	> 31	> 30
Good	47-56	39-47	34-41	28-34	25-31	24-30
Above average	35-46	30-39	25-33	21-28	18-24	17-23
Average	19-34	17-29	13-24	11-20	9-17	6-16
Below average	11-18	10-16	8-12	6-10	5-8	3-5
Poor	4-10	4-9	2-7	1-5	1-4	1-2
Very Poor	< 4	< 4	< 2	0	0	0

Push Up Test Norms for Women

Age	17-19	20-29	30-39	40-49	50-59	60-65
Excellent	> 35	> 36	> 37	> 31	> 25	> 23
Good	27-35	30-36	30-37	25-31	21-25	19-23
Above Average	21-27	23-29	22-30	18-24	15-20	13-18
Average	11-20	12-22	10-21	8-17	7-14	5-12
Below average	6-10	7-11	5-9	4-7	3-6	2-4
Poor	2-5	2-6	1-4	1-3	1-2	1
Very Poor	0-1	0-1	0	0	0	0

 

You know what? If I had seen this information before I started my return of strength recently, I may not have pushed it as fast, or as far as I have. My muscles, I knew, were not very good at responding to exercise. As it is, it took a number of months of daily exercise to get a response that would have been in the consistently “Good” range for a 60-65 year old male. Now, at 50 twice a day, I am close to “Excellent” for a 17-19 year old and way above “Excellent” for my age.

My goal for now? No limit. I will keep doing pushups as long as my body allows me to. My appetite is way better than it has been. My stamina is increasing for the first time is years. And my weight is increasing. Why limit it?

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.    .  

Parsonage Turner Syndrome from National Organization for Rare DIsorders

https://rarediseases.org/rare-diseases/parsonage-turner-syndrome/

Lots of good information and in a non-technical easy to understand style.

I wanted to point this out - "Finally a diagnosis but still more questions"

I have added a link to this blog posting. It is another story of the problems encountered in getting a good diagnosis. Click this link below, or the permanent one shown in my links section.
Finally a diagnosis but still more questions

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).”

3 things the chronically ill wish their loved ones knew

This is from Psychology Today



http://www.psychologytoday.com/blog/turning-straw-gold/201405/3-things-the-chronically-ill-wish-their-loved-ones-knew

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.  

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.