Back to Twitching - Update

[Droid4Free]

have not been here for awhile! How is it going??

I had been doing better but now and a little freaked...for those of you who are new, i haVE BEEN TWitching for 6 years now. did the whole als scare and got it behind me a long time ago until I flared again last may and went through the whole thing again. went to the ALS specialist, had 2 emgs, etc... last June. put on effexor.

NOW my tongue just started to twitch and burn and I am freaked...what have your neuros said about tongue twitching?????

 

[ydav3yat3s]

don't worry about it one bit. My neuros have said it's no more significant t han any other twitching. My tongue has been twitching for six years now, and it's at its worst after coffee and when i think about it. the only thing that makes it go away is not thinking about it.

 

[DJohnDavies]

SLL,

My neuro never said anything about tongue twitching. But I've read lots and lots of posts from people whose neuros told them that tongue twitching was no greater worry than any other kind of twitching.

I guess you thought you'd had every twitch since you've been at it for 6 years, so I can understand why this might freak you out. But from what I gather, it's no worse than if your big toe started twitching all the sudden. Hang in there.

Johnny

 

[SpellWiz24]

My tongue twitches too and I will ask my neuro about it. I have an appointment on February 24. I let you know.
Eve

 

[Droid4Free]

thanks for the reassurances. i emailed my neuro - he runs one of the two the ALS Centers in san Francisco - and he did say tongue twitching is common in BFS. Phew! had never had it before - did NOT like it.

he suggested that since it has been 6 months since i have seen him, to go to the local ALS/Neuromuscular center here - I now live in NYC - to get a reassuring follow up, as he put it.

So I made an appointment with them there for March 11.

 

[BoyyDavoMan]

Tongue twitching is common and the involvement of cranial and bulbar nerves is documented in several papers about BFS/PNH. You can download and read the papers by or to get a better idea.