Tongue twitch at rest!?!

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Tongue twitch at rest!?!

Postby Sadface on July 6th, 2014, 12:22 pm

Hi all
After a mental blip I went to A&e. The doctor looked at my tongue as I said I felt I had atrophy and it twitches. The doctor said she can see the twitches but won't refer me to neuro as she doesn't feel it is ALS.

However, everything I read states twitching of tongue at rest isn't good sign.
Mine def twitches at rest: little quivers, twitches etc. I find it hard to keep it completely still at rest at all. Don't get me wrong I've seen YouTube video on someone's post of an als tongue going crazy. It's not that bad but it's far from still.

Does this happen to anyone else at all????
The previous posts I see are the ones that twitch when sticking out?
Please give comments?
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Re: Tongue twitch at rest!?!

Postby MarioMangler on July 6th, 2014, 6:13 pm

If you have BFS you have muscles that twitch. Your tongue is a muscle. It is no different than if any other one of your muscles twitches.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: Tongue twitch at rest!?!

Postby Josmo on July 6th, 2014, 11:11 pm

When i look at it for more then 30 sec , something will def twich , jerk or move so i guess its normal
I saw few videos of resting twitching tongues on this site !
One was lb76696 , and one more can't remember name ,
Matt has twitches too in resting tongue !
Bfs I guess ! ;)))
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Re: Tongue twitch at rest!?!

Postby TwitchyDoc on July 7th, 2014, 1:40 am

The key thing is - are you sure its not normal tongue tremor / tongue movements? Real tongue fasciculations are quite small twitches, producing dimples in a fast manner.

Here is how real tongue fasciculation look like - my own video:
https://www.youtube.com/watch?v=tayBtip ... 1398976681

You can clearly see how small area and how fast movement it is.. If yours are more like occassional twitching on the edges that affects larger portions, I would say its normal.

Something like lb76696, her twiches (at least those in the videos she posted) are absolutely normal movements of the tongue.
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Re: Tongue twitch at rest!?!

Postby Sadface on July 7th, 2014, 2:46 am

Well it's hard to say I guess. When my tongue is in my mouth I find it hard to keep it really still. More shakes/ quivers. I became more worried due to the dent at the left side of my tongue in the middle/back (so not really from my teeth.)

I get twitches all around my mouth: bottom lip, chin, cheek!?

Does your tongue twitch like that when it's in your miuth and your looking at it?
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Re: Tongue twitch at rest!?!

Postby TwitchyDoc on July 7th, 2014, 3:29 am

What do you mean by 'hard to say'? In my video youcal clearly see how different it is from tongue movement. I too am able to hold it still, as shown in the video, so the fasciculation can be easily seen (and was felt). Normal movement are never felt. And Yes, sure i could see it with tongue resting but as that occured on the side, it would be better to shoot it this way.
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Re: Tongue twitch at rest!?!

Postby Sadface on July 7th, 2014, 4:23 am

I meant hard to describe. It shakes so find it real hard to keep completely still. I see little dents popping around which I feel but because I find it hard to keep still, it hard to know if this is a twitch or my tongue moving.

I feel popping when mouth closed.

I meant when you don't stick tongue out does it twitch.

I'm getting slightly paranoid about my voice: it breaks when speaking for a while, it cracks a bit but doesn't really slur.
When on a night out my throat ends up being really soar during the night when I've been talking slightly louder. These issues to worry about?
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Re: Tongue twitch at rest!?!

Postby Josmo on July 7th, 2014, 7:24 am

I'm driving so sorry for typos , I know it's not safe !
If I lift my tongue in my mouth little bit the whole tongue tremors , same as I turn in while still in my mouth whole side tremors !! Had it for 14 months now .... Post a video if so concerned , twitchydoc will tell you ,
He's really helpfull !
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Re: Tongue twitch at rest!?!

Postby Sadface on July 7th, 2014, 7:27 am

Not sure how to upload videos and photos?
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Re: Tongue twitch at rest!?!

Postby Josmo on July 7th, 2014, 7:34 am

Well if you have youtube , upload the video then paste the link to the post !
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Re: Tongue twitch at rest!?!

Postby Sadface on July 7th, 2014, 3:24 pm

I was tempted to, but realised this May fuel my anxiety if no one had the same experience!
What's strange is that since my tongue started, my chin and lips and tag surrounding area, has started. For the first time I got neck twitches!!!
Slightly freaked out!
Does this occur when others can a twitching area?
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Re: Tongue twitch at rest!?!

Postby cmjordan28 on July 9th, 2014, 3:24 pm

I have had tongue twitching (at rest) off and on since 2009. I started twitching in 2008 - right after I had a sinus infection. Early on I saw several neuros - had a few EMGs - all clear. I last saw the neuro in 2010 - he told me to get out of his office and not come back. He said tongue twitching is no more sinister than any other twitching - just less common.

In 2010 - they did pick up twitching in my calf on an EMG - said it was not ALS - and to move on.

I have posted on here a few times over the years - but like many of the others say on here - don't worry of the neuro tells you there is no issue - because you can drive yourself crazy for no reason.

I have had twitching in every muscle. Intrestingly my dad has had global twitching since he was 21 (he showed me his medical record where it was documented) - and he is 65 now. He has never had any in the tongue though - but I sure do.
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Re: Tongue twitch at rest!?!

Postby Sadface on July 15th, 2014, 1:41 am

I wish I never got a flash light to my mouth! It's the tiny little flickers that freak me!!!
*beep* you google!!!!

Why is it common for other muscles to twitch at rest, but when tongue at rest and twitches it's a bad sign!!?
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Re: Tongue twitch at rest!?!

Postby J4son on July 15th, 2014, 2:14 am

Sadface wrote:I wish I never got a flash light to my mouth! It's the tiny little flickers that freak me!!!
*beep* you google!!!!

Why is it common for other muscles to twitch at rest, but when tongue at rest and twitches it's a bad sign!!?


Well that’s why I’ve put some rules to myself from the start of my twitching episode. Some of the rules being to never check my tongue never ever; to never put a flashlight toward my feet or calves trying to find tiny twitches that I can’t feel; and to never visit an ALS forum. As Nietzsche said: If you gaze long into the abyss, then the abyss will gazes back into you. If people keep trying to scare themselves, ultimately they will succeed. Staring at one’s tongue into the mirror isn’t an obligation, a duty or a requirement. It’s a choice, a mere behavior that can be avoided and changed. If someone has real concerns about his health, the one and only way to have a diagnosis is to see a professional (neurologist) and to be checked, and if everything is fine to move on with his life. All these tongues and other body parts inspections and examinations are a one way ticket into the pit of terror. It’s like fighting werewolves without a silver bullet. Anxiety is not going to be beaten that way.

I’m sure that if now at this precise moment I check my tongue in the mirror, with or without the help of a flashlight I’ll see a zillion of weird things going on, and since I’m not a neurologist I’ll be unable to say what is really happening. So I’m happy I’ve speared myself these kinds of useless fears.

I’m also sure that most people complaining here about tongue twitches do not even have real tongue twitches.
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Re: Tongue twitch at rest!?!

Postby Sadface on July 15th, 2014, 2:24 am

Some wise words.
I agree and I know not to do it, but I end up doing it anyway.
I think I need to force myself to stop!

I'm trying to make use of some CBT tools:
1) if had had als, would staring at my tongue cure it? No!
2) does staring at my tongue give me reassurance? No
Answer being: don't do it then!

Easier said though!x
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Re: Tongue twitch at rest!?!

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