Gracey's thread

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gracey35

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Joined
Jun 22, 2021
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6
Reason
PALS
Diagnosis
06/2021
Country
US
State
MI
City
Waterford
Why do I keep reading that twitching all over at the same time leads away from ALS, not according to my Neurologist
 
Hi Gracey-

I've moved your post to its own thread, as it's a question that deserves its own discussion outside of the topic of the original thread you posted on.
 
Gracie, ALS is a rare disease. It's even more rare when a husband passes from
ALS and years later the wife is then diagnosed too. Rare has no bounds
here... your twitching all over maybe another rare onset/symptom.

I wonder if you and your husband had exposure to something... work,
environment, chemicals and such. There are topics of that possible link...
the unusual high number of veterans with ALS for example.

Good question.
 
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Your neurologist is correct, Gracie, although most cases start with localized twitching that then spreads. I was one of the atypical pALS whose first symptom was body wide twitching, with no functional failure. As Al said, it is more rare than localized twitching that spreads, but it does occur. Published literature indicates that this all over the body initial presentation seems to be more prevalent in men over age 50, like me, but it can and does occur.
 
I have Bulbar onset ALS and I was diagnosed based on elimination of evertvother possible disease. I had slight twitching on bot legs and one arm. And after 27 months just started to lose mobility. And is centered on my left arm too.
 
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