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.