Hey tongue twitchers

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Hey tongue twitchers

Postby SLL on February 14th, 2005, 11:34 am

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?????
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Postby dave y on February 15th, 2005, 5:49 pm

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.
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Postby Johnny on February 15th, 2005, 11:01 pm

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.

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Postby Eve on February 16th, 2005, 2:28 pm

My tongue twitches too and I will ask my neuro about it. I have an appointment on February 24. I let you know.
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Postby SLL on February 17th, 2005, 5:39 pm

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.
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Postby eleven on February 18th, 2005, 12:40 pm

when i told my neuro that my tongue twitched, he just said okay. i might have well been saying that my eyelid twitched. he said the tongue is a muscle like any other voluntary muscle.
The eagle never lost so much time as when he submitted to learn of the crow -William Blake
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Tongue fascics?

Postby Davey on February 18th, 2005, 3:15 pm

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 Braune et al. (1998) or Hart et al. (2002) to get a better idea.
Cheers,

Dave

Proud sufferer of Cramp-Fasciculation Syndrome since June 2001.

"Do not fear death tomorrow so much that you forget to live today."
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Tongue fascics?

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