How long to continue follow up?

[DGret]

(prev thread here)

Have been followed/examined every six months or so since the start of widespread fasics now 31 months ago. Only finding was symmetrical +3 reflexes without clonus, negative Babinski’s, negative Hoffman’s. No clinical weakness identified over this time. (Datapoint: I am 72; I know that it has been said that makes over 50 can twitch for a while, not sure how long, without clinical weakness, not sure how long.

So, with no weakness identified over 2 1/2 years (with serial exams by ALS specialist NM neurologist), is 21/2 years long enough to say “no ALS”, or is an EMG absolutely required to make that statement? Or is it still possible clinical weakness or failure could show up, and is it likely through that many exams that clinical weakness would be missed?

Would like to wrap this up.

Thanks for considering these guiding questions.

My best wishes to all of you.

 

[lgelb]

If I could 100% predict the future, I'd be on Wall Street, but I don't see any reason for an EMG, nor, evidently does your neuro. Nor have I heard of an onset at your age as delayed as yours would be, let alone one only characterized by widespread fascics, which argue strongly against ALS. So if you have weakness at some point, I don't think it will be related to the last 2.5y.

I think you should put this behind you, chalk it up to BFS, and enjoy your life.

Best,
Laurie

 

[DGret]

Laurie:
Thanks for your thoughts.

I think one of several points of confusion are the general assumption that BFS happens only in the young; that if seniors twitch, it must be sinister. I don’t know if that has ever been addressed in a definitive way.

My thought is obviously to discuss with the neuro, but in the absence of weakness or failure happening, to get on with whatever residual of life I am allotted.

Thanks again, you are very kind.

David

 

[Nikki J]

I think it is rather the reverse that twitching alone is almost always benign no matter what your age but the rare exceptions tend to occur in men over 50. Most senior twitchers are ok. Health anxiety is not unique to the young but more prevalent in that group.