Tongue Twitching and ALS Worries

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PamelaTheGreat

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How many of you have had tongue twitching? Does that mean ALS or can any muscle twitch? It's a very strange feeling that started about 2 days ago. I've been twitching every where else for about 2 months.

Please let me know so I can have a little peace of mind that I'm not the only one!!
 
Oh God, 6 months of tongue twitching! My doc gave me Flexeril to try to ease the twitches until they can figure out what 's going on.
I'm twitching all over as I type this.... how do you people deal with this for years!!!
Is the only way to tell if things are OK is to get an EMG?????? I'm going to call my doc for sure if that's so...
 
I dunno about that, Pole. I mean, we are (most of us) diagnosed with Benign Fasciculation Syndrome, so why should it be a bad sign if some of those fasciculations appear in our tongue as well?

Your last post gave me a moment of great self-doubt -- how can I be certain that what I have in my tongue aren't fasciculations, if what I have in my other muscles has been diagnosed as fasciculations? I'm just not sure if I can tell the difference anymore, since I seem to get all manner of fasciculations, myokemia and myoclonic jerks all over my body.

IMO, if neurologists are giving us clean bills of head despite twitching tongues -- and they could never really be sure if we mean fasciculations or some other sort of twitch when we say 'my tongue twitches' -- often without a tongue EMG, than I really don't think it's so black and white as you suggest, Pole.
 
I was told that tongue fasciculations are an obvious sign of MND. Two neuros told me that. They also told that twiching of tongue is not what they call "tongue fasciculations". They said that it is impossible to have tongue fasciculations without tongue atrophy and speech or eating problems.
Tongue fasciculations are the last stage during bulbar stage. They also said that if tongue starts to fasciculate that these fasciculations are constant (really NON-STOP, not 10 twiches a day) untill patient's death ussually.

So, I would give my head that there is no single person on that board with real tongue fasciculations.

Regards
Marcin
 
ok, it just seems really weird to me that the tongue is somehow unique in that fasciculations in the tongue point to certain atrophy whereas fasciculations in any other muscle can have a benign pathology.
 
I think there is an explenation.
The tongue is the one and only uncovered muscle - I mean there is no skin on that muscle and all sensations on the tongue are very well visible.
So the neuro can see exactly what's going on with your tongue. If he sees something what is fasciculation and he sees that it's constant that is a sign that something's wrong (propably in this stage there would also be an atrophy in the tongue).

I think that if any other muscle would also be uncovered (brrrrr....) and if that muscle would fasciculate in the same way as tongue (constant, random twiching in the same muscle) it would also be obvious sign that something is going wrong.

So, we are back to the question if there is a diffrence between ALS and BFS fasciculations. Most of you will say NO. But I think there could be a little diffrence. Answer my question please: when you twich in one muscle (arm for example) is it a repetitive twiching of exactly the same spot or is it a random twiching of diffrent spots in the same muscle (I mean during one twiching "attack")???????????

I think your answer will be: the same spot, and I think it's more characteristic for benign syndrome than ALS. In ALS many muscle fascicles in the same muscles are denervated at the same time so many of tham would twich at the same time. That's why people say that ALS twiching looks like worms under skin (because many little spots twich at the same time).


regards
M.
 
so by your theory, if you have a repetitive fasciculation in the same part of the muscle tissue of your tongue then you're ok?

your question about fasciculations in an attack being in one spot or randomly distributed -- well, recently they seem to occur in one part of an affected muscle for me, but around a year ago i had random and pervasive fasiculations in my legs that were so bad that i couldn't sleep on my side because feeling the rippling skin in one leg against the other leg was too distracting/nerve-wracking.

anyway, it's all a very interesting topic, but i think i'll go back to trying to think about other things now -- watch a horror movie, drink a beer, take a walk... ;)
 
If you have just twiching of tongue (single twich or repetitive twiches of the same spot or even repetitive twiches <2 or 3> of all tongue) you are OK. If you have tongue twiches and at the same time you have no speech or eating problems that means that your twiches are not tongue fasciculations (in neurological meaning).

I have never heard about Japanese beer, do you have your own one???
I think you heve never heard about Polish beer :D)

regards
Marcin
 
RareAir
you are 100% right - the only way to find if your twiches are fasciculations or not is to "catch" a twich on EMG. Fasciculation is a well described EMG electric potential and every electromyographer will recognize it. But not every twich is a fasciculation so you may twich during EMG and something may be recorded but neuro will tell you that this twich is not a fasciculation.

Of course I agree that fasciculations (also visible on EMG) can be benign and normal. And also on tongue. If you have single twiches of tongue and you are so "lucky" that you have a twich during tongue EMG and the neuro tells you that it is fasciculation you still may have a benign condition.

All I wanted to say was that my neuros claim that if you have constant (not single twiches) twiching, ripling and so on of your tongue it is a bad sign. I heard that there is a very characteristic look of fasciculating tongue and it is impossible to miss it during neurological examination.

If you are wonder if you have tongue fasciculation that means that you have not or your tongue twiches (fascics) are benign.

regards
Marcin
 

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