Disease slowing down?

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janicebuf

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Hi Guys, I know you're not Dr.'s but have a question....my brother had constant muscle twitches for several months. He has ALS which started in the Bulbar region (age 46). Anyway, I emailed him today as he is finally getting his tube put in tomorrow (thanks to you who answered my emails which I forwarded to him), and asked him how his 'tiwtching' has been. He said it has slowed down considerably....I am curious to know if there's a possiblity that the twitches are kind of gauge with this disease and if it's possible that it could be slowing down a bit? Thanks!
 

rcharlton

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Hi Janice,

I don't know if they have ever done a study where it is shown that there is some correlation between the frequency of twitching and the progression of ALS.

I know I have had periods of where is seems like there is a whole army of mexican jumping beans having a party under my skin - and other times it is reasonably calm with no noticeable twitching.

My neurologist told me that one of his fastest progressing ALS patients experiences no twitching while one of his slowest progressing patients twitches all the time.

There are cases where ALS progression seems to plateau. In my case, it's been a bit of a roller coaster ride - noticeable progression followed by periods where I seem to plateau without any progression.

In short - I don't know that you can take the lack of twitching to mean anything for sure.

That's the brutal thing about ALS - you can never be sure if a lack of noticeable progression is attributable to changes in diet, additional supplements or medication or just the natural progression of the disease...
 

Al

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Hi Janice. My own experience has led me to believe that as long as you have twitching that there is still good muscle to move. When the twitchig is gone completely usually so has the muscle function. My hand fasciculations have almost stopped and my hands are pretty far gone. I can still grip somethings but others are just about impossible.
Al.
 
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