myokymia in tongue

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myokymia in tongue

Postby joycecaroll on August 5th, 2014, 12:22 pm

Is it possible?

I had a clean emg in my tongue yesterday and the neuro said bfs. Since I've read bfs can't affect the tongue, I'm wondering if my 3 sec twitches in my tongue could be myokymia? If so, is the link to ALS smaller?
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Re: myokymia in tongue

Postby bobajojo on August 5th, 2014, 12:43 pm

BFS can absolutely affect the tongue. Trust me on this. I've had all kinds of tongue twitches every day for over 3 years. I know many many other BFSers with the same. Forget about what you've read. -Matt
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Re: myokymia in tongue

Postby joycecaroll on August 5th, 2014, 12:51 pm

bobajojo wrote:BFS can absolutely affect the tongue. Trust me on this. I've had all kinds of tongue twitches every day for over 3 years. I know many many other BFSers with the same. Forget about what you've read. -Matt


I'm so scared about this. I read (from several docs) that fasciculations in the tongue are always worrisome. Why would they say that?
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Re: myokymia in tongue

Postby bobajojo on August 5th, 2014, 1:04 pm

Who knows. No one knows what you've read, who wrote it, when it was published, etc. I can tell you that the Mayo Clinic saw fascics on my tongue and didn't care one bit. Same with Mass General Hospital. So you can either believe the best neurologists in the country or something you read on the internet. Your choice.
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Re: myokymia in tongue

Postby joycecaroll on August 5th, 2014, 1:13 pm

Thank you so much! I feel a lot better.
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Re: myokymia in tongue

Postby mwagner on August 5th, 2014, 2:46 pm

I think if you did a survey on here, over half the people have had twitching of the tongue (myself included). And, in my case, based on videos and descriptions - mine is a fasciculation.

There is no sensible reason why ALL BFS twitches can be benign, except for the tongue. That makes no sense. If we have hyperexcitable nerves, it will affect any part of our bodies. I have had my eardrum twitch, I kid you not.

And you had a clean EMG to top it all off. It's totally benign in your case, so try not to worry about it!

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Re: myokymia in tongue

Postby pdodge715 on August 16th, 2014, 11:41 am

Twitcher for over 2 years checking in. My fascics began late June/early July 2012, and my tongue joined the party shortly thereafter. The fascics in my calves (point of origin for me) have been constant for that entire time - while my tongue hasn't been 24/7, it's absolutely daily and probably almost hourly. Definite correlation between tongue twitching and caffeine intake & stress, too...but it was still twitching away even when I cut caffeine entirely for a couple of months in late 2012.

My understanding of the concept of tongue twitching being as hallmark of MND is that it is an antiquated, unsubstantiated theory - and that it really relies on the tongue-twitching being just 1 symptom of full-on bulbar onset ALS. My understanding of bulbar is that it is a particularly rare and rapid manifestation of the disease. If you can still talk and chew and swallow and aren't rapidly deteriorating, it's pretty safe to rule that out as far as I know. (As an aside, be careful not to over-examine yourself in this area... a VERY COMMON manifestation of anxiety is to feel tightness in the throat and experience difficulty swallowing, so guess what happens if you start stressing about how well you can swallow??).

What I can tell you, is that my body has been through a heck of a lot over the last 2 years and I feel very strange all of the time. I twitch everywhere, I tingle, I feel off-balance, etc (read my 2-year update if you want the full story and have some time on your hands)... But considering that it's been ~25 months or so and I'm still walking, running, lifting, and not confined to a wheelchair or burial chamber, I don't have ALS. And neither does anyone else whose tongue twitches from time to time without other severe, rapidly progressive symptoms.
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