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Old 11-24-2009, 10:30 AM   #1 (permalink)
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Default Tongue twitching

Can folks describe if there is any difference between "benign" tongue twitching and the type of tongue twitching one sees in ALS in the tongue? I have occasional tongue twitches, accompanied by a burning, pulling, painful contracting feeling in a small area on the tip of my tongue that come and go. I can see the pull on the tongue's when it happens, and then it relaxes.

Would more ominous twitches due to ALS be more constant, and create constant movement on the tongue?

So many people say tongue twitches are just a part of BFS with no weakness, and then I read tongue twitches are concerning....

I twitch all over by the way... tongue is new.

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Old 11-24-2009, 02:44 PM   #2 (permalink)
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Default Re: Tongue twitching

Please read this post that I copied and pasted from another thread.
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Re: 21m scared

--------------------------------------------------------------------------------

this calmed me down
Twitching Muscles, ALS and Beating Fear , Page 2 of 3 - Associated Content - associatedcontent.com
Tongue Twitching Reassurance It's Not Bulbar - Associated Content - associatedcontent.com
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Old 11-24-2009, 03:03 PM   #3 (permalink)
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Default Re: Tongue twitching

Hi Suzanne,

apparently tongue twitches have a very specific quality to them, which have been described as a "bag of worms" appearance. when I stick out my tongue, or even let it rest in my mouth, it appears to be twitching.

however, when I saw a neurologist who specializes in ALS, he examined my tongue at rest and while sticking out and he said I do not have fasciculations.

hopefully your tongue issues are benign.

Sandra
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Old 11-24-2009, 08:46 PM   #4 (permalink)
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Default Re: Tongue twitching

As I understand it, 99% of tongue twitching is benign ... and it's very common.

If it comes and goes, or if it appears when you stick out your tongue, it's almost certainly benign. I have no idea when mine started, because I don't normally look in my mouth with a flashlight, but about 9 months after my speech started to slur, an ENT noticed I had fasciculations when my tongue was at rest in my mouth and put it together with my slurred speech, and sent me to a neuro.

Mine were constant. Never stopped, never slowed down. They could be described as a bag of (very tiny, very active) worms. They covered my tongue completely. To me it looked like infinite tiny quivers all over the surface. It was not the tongue itself twitching ... my tongue did not move ... it was the surface only, creeping and quivering, like it was electrically charged. Very different from any other twitches I've ever seen.
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Old 12-02-2009, 02:19 PM   #5 (permalink)
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Default Re: Tongue twitching

Thanks for the replies. So I scheduled an appointment with a very well-regarded head of neuromuscular neurology at Cornell here in NYC - a great guy. He used to run the ALS clinic here and now has his neuromuscular practice at the hospital. He saw me the other day, and basically said twitching with nothing else, is benign. Period. He even said "If all you have is twitching, we can stop right here". He asked an important question - "Can you do all the things you WANT to do without problems? If you can, he said, then you do not have a motor neuron disease.

He did a short neuro exam which included a reflex check, strength test on all limbs, looked at my limbs for twitches and atrophy, and then had me stick out my tongue, make a big smile showing all my teeth, and then rest my tongue in my mouth and he looked for twitches. He saw nothing.

I still have a twitch at the tip of my tongue, that is driving me crazy with fear. I check my tongue all day long...which I know is bad.

He was just so confident and in a very nice way dismissive of my concerns.... of course, I begin to wonder if he was thorough enough in looking at me...

With an ALS and neuromuscular expert neuro and your first appointment, wouldn't some bells go off right away if there was anything concerning?

sorry...
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Old 12-02-2009, 03:02 PM   #6 (permalink)
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Default Re: Tongue twitching

Because the very experienced, highly regarded doctor, head of neurology at Cornel was CONFIDENT that you do not have ALS, you are more worried than ever?

Yes ... there should be some big bells going off here ... for you. Please talk to somebody (counselor, regular doctor, relative, pastor) about your anxiety and get some help.

Good luck.
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Old 12-02-2009, 03:27 PM   #7 (permalink)
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Default Re: Tongue twitching

suzanne, check out Benign Fasciculation Syndrome. I think the website is aboutbfs.com.

Your anxiety will be greatly decreased after you see how many people have twitching muscles, literally every part of the body.
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Old 12-03-2009, 05:31 AM   #8 (permalink)
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Default Re: Tongue twitching

Suzanne, I have never replied to anyone here. I have only asked questions about the same thing Tongue twitching that started 29 months ago. I think I know what you are going through. Every time you feel a twitch or tingle in your tongue your heart races and you run to the mirror hoping that nothing is there. When you see the twitch the cycle starts all over again. The constant worry that this is the start of ALS

You visit so many doctors hoping that one will give you an answer. When they all say the same thing you leave happy but then the twitching comes and you start to doubt the doctor. You go to the Internet looking for answers and you become scared out of your mind.

You take drugs that take the edge off your worry but they never fix the underlying problem. You are worried and want an exact diagnosis on why this is happening.

On Tuesday I was at my Neuro who wasn't surprise to see me he said he knew I would be back. The receptionist is always happy to see me I always bring pastry. I told him how my tongue twitch had spread to the other side of my tongue. I had injured the 5Th nerve and another nerve in an accident this past May and I could not move the left side of my face. My GP has told me in all of the years he has practiced he has never seen someone that has recovered as well as I had and if I had ALS this would not have happen. I ask the Neuro on how my face looked since the last time. He said he was amazed and that if I had ALS no way no how would these nerves have come back.

I said how about an exam he did one and said after all of these years I would see something. I don't want to jinks anything so I will not say what he said. I said when should I come back? Only when I want to stop by with pastries. I said no when will I know to come back he said when my wife tells me. He also asked my wife if she got the paperwork done for the gun to shoot me. I left there happy but soon the doubts came back.

I try to walk an hour a day. During my walk Tuesday I realized something if I am lucky to live to be ninety I will still be thinking do I have it or not. It is not going to be easy when I feel something happening with my tongue but I have to believe the experts until they are proven wrong. My wife says it is like being in AA one day at a time. For me it is minute to minute.

I understand your fears and doubts because I live them each and every day. This disease is one that strikes the core of your being. To me every one out there who has ALS and battle it every day are true hero's
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Old 12-03-2009, 02:55 PM   #9 (permalink)
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Default Re: Tongue twitching

I have tongue twitching for three years and twitching through my hole body for the same time. I was told I have bfs. I didn't believe this and I lived the past tree years only looking for something else. I still think thatI have something else but the doctors couldn't figure it out. I also have another symptoms that could be something else like hyperreflexia for example. Since my symptoms stay the same all this time they say I have bfs and I want to believe them. I am not the only one diagnosed with bfs who has tongue twitching, you can find others with this syptom in aboutbfs.com
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Old 12-04-2009, 08:40 AM   #10 (permalink)
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Default Re: Tongue twitching

Quote:
Originally Posted by BethU View Post
Because the very experienced, highly regarded doctor, head of neurology at Cornel was CONFIDENT that you do not have ALS, you are more worried than ever?

Yes ... there should be some big bells going off here ... for you. Please talk to somebody (counselor, regular doctor, relative, pastor) about your anxiety and get some help.

Good luck.
Well said Beth. Dani
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