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AboutBFS.com • View topic - More tongue issues

More tongue issues

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More tongue issues

Postby sirtwitchalot85 on November 24th, 2007, 10:38 pm

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Postby Angie on November 24th, 2007, 10:45 pm

Cramp-fasciculation syndrome: a treatable hyperexcitable peripheral nerve disorder.
Neurology. 1991 Jul;41(7):1021-4 Tahmoush AJ, et al.
"muscle aching, cramps, stiffness, exercise intolerance, and peripheral nerve hyper excitability"
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Postby Alayne on November 25th, 2007, 3:40 am

My tongue has been twitching most days (can see and feel it) since April 2005 - over 2. 5 yrs now. This started up after nearly 5 yrs of bodywide twitching. I can still eat as usual, speak clearly and swallow well, plus do all the tongue tests for strength. It is, IMO, just about the worst and most worrying twitch you can have. I try to comfort myself (and that's very hard to do) that my tongue would surely be weak by now if it was ***.
Trust what Angie says, she has reassured so many people :D
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Postby Capital H on November 25th, 2007, 6:10 pm

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Postby valger59 on November 26th, 2007, 12:15 am

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Postby sirtwitchalot85 on November 27th, 2007, 1:24 pm

Val,
We both seem to be suffering from the same issues, the odd of us both having *** are very slim! I'm 22 years old and i have had a EMG so if i have ALS i expect to also win the lottery very soon and get struck by lightning as im leaving the bank..

Also, i forgot to mention this to everyone here. When i visited the *** specialist, she mentioned that she often sees BFS in young, slim, males. I know everyone does not fit that demographic just some more facts to throw out there. She emphasized slim, im not sure what this has to do with it, but thats what she said. She also said that she has never seen a BFS case turn into something ominous and BFS can last for months or the rest of your life.
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Postby valger59 on November 28th, 2007, 12:02 am

Hi~~
That is weird, and I'm going to mention that to my brother, cause he started getting the twitching thing and all the fun symptoms that go along with it back when he was younger, and he has always been thin, and in very good shape. He's a runner, and just generally thin, lean, and tall. He still gets the twitching nowadays, but he doesn't worry about it as much as he did back then. Since it's been years now, I guess he figures it's nothing too serious.
LOL~~that's funny about getting hit with lightning while you are leaving the bank! Right after you cash your lotto check, right? Also, you being 22, I mean, that would be the rarest case of als ever!! I'm just a teensy bit older than you, and so for me, it's more likely that it could be als, but I think it's still on the list of rare things, even as you are older. I felt better after reading something on the internet, which is unusual, but it said that even if you do have twitching with weakness and atrophy, even then, als would be a rare cause of your symptoms, that there are still lots of other things that do that. Good to know!!
I worry alot about the tongue twitching, only cause I didn't have it at the beginning, so it feels like some kind of progression. Do you ever notice that it will come at certain times? I guess mine has no real pattern, although it does seem, and I'm not really sure yet, but it seems like it'll come on as I'm rushing around alot. Today, I was at the store, and in kind of a hurry, and as I was carrying some heavy bags out to the car, after I got in, my tongue started popping a bit. Kind of like going along with my heart rate being up or something, or maybe nerves, since I was rushing around.
Also, and I'm sorry if I'm repeating myself here, but do you get the tongue twitching all over the tongue, or in one particular spot? I will get it in the middle, but I do get the twiches in the tips alot too. Sometimes, like what happened the other night, is that I'll feel the pops on the tip, and then it'll feel like my whole tongue is kind of twitching, sometimes even far back, almost going down my throat or something. Hard to explain, almost like a short of breath feeling that only lasts a second or two.
Thanks, talk to you soon! Val
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Postby c4110djh on November 30th, 2007, 12:34 am

I had BFS symptoms for several years before I experienced tongue twitching. I've had the tongue twitching for several years on and off. It was very scary at 1st but it's just part of the whole BFS thing. Hope this helps.
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tounge? no problem

Postby Günther on December 2nd, 2007, 4:08 pm

Hie, i am an very old tounge-twitcher :lol: .

I have had touge twitches since 3 years: EVERY DAY and i am fine! Many neuros have had said to me : NO PROBLEM. A neueomuscular specialis in Hamburg Germany said to me; Tounge-twitches without EXTREME, EXTREME Problems are absoloutly no problem and often seen. They said to me, when the twitche are because of XXX evberybody would notice it!!

So think of that, tounge -twitches are no problem!!

Greetin from Günther
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Postby Alayne on December 3rd, 2007, 4:51 am

Gunther, thanks for your reassuring words :)
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Postby Mark S on December 4th, 2007, 12:18 am

My tongue twitched on and off and was very bad at the beginning of this mess. I also had palatal myoclonus which you can hear as a clicking sound in the back of your throat. I freaked on that but it turns out it is b9 unless it never stops in which case it is likely a lesion on the brain. Anyway...blah blah.

The point...I have had periodic tongue twitching for nearly three years and have developed no problems. There are some remarks on the internet that the tongue twitching is considered a bad sign but this has been repeatedly shot down by neuros we have seen. My doc told me the tongue is just another voluntary muscle and it can and does twitch in bfs cases.

Listen, my brother-in-law had MG which impacted his tongue, throat and chest muscles...believe me when I tell you that I could not understand a word he said. He could not eat, drink, swallow or lay down. When the muscles are truly dying it is so obvious that you don't have to be a doctor to know it.
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