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).”