Gracey's thread

gracey35

New member
Joined
Jun 22, 2021
Messages
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
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,557
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
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.
 

Clearwater AL

Very helpful member
Forum Supporter
Joined
Aug 28, 2013
Messages
2,191
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Get Real
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.
 
Last edited:

KevinM

Distinguished member
Joined
Mar 30, 2019
Messages
442
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
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.
 

rnewton60

Active member
Joined
Mar 1, 2021
Messages
33
Reason
PALS
Diagnosis
11/2019
Country
US
State
CA
City
Fremont
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.
 
Top