Tongue twitches - can be felt

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Re: Tongue twitches - can be felt

Postby TwitchyDoc on August 19th, 2014, 4:22 am

joycecaroll wrote:No neuro has been able to answer if tongue fasciculations can be benign, but no one thinks ALS is possible.


I have the same experience. I asked two authors of a neurology textbooks, neither has seen benign tongue fasciculations - I showed them my video and they actually thanked me for letting them know and that they should not be so dogmatic in their books. But I find it very strange they do not even get to see widespread BFS (Pamela Shaw wrote me that all her BFS patients have only calves affected).

One problem here is the information distortion - from this site it seems that many people have tongue fasciculations but the problem is that they only think they have. For example Amy (Sadface) posted a few threads about her tongue fasciculations but I have seen videos she sent me and there was nothing but normal movement. Unless you can feel repetitive twitching in a spot and see it, or see repetitive twitching of a spot on the rested tongue, do not think you have fasciculations in your tongue.
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Re: Tongue twitches - can be felt

Postby Sadface on August 19th, 2014, 4:29 am

If Pamela Shaw said she had never seen bfs in her patients that have more than calves affected, does this mean she's not seen anyone who twitches elsewhere unless they've had MND?
Or the twitches they she has seen elsewhere have not come back as fascics on emg?

I do get concerned about tongue twitches you are very right. But this is also accompanied by the fear of my tongue having atrophy due to the clear dent at the side. It's having both these concerns that worry me.
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Re: Tongue twitches - can be felt

Postby TwitchyDoc on August 19th, 2014, 6:05 am

Amy, I do not know. She just told me all her BFS patients have calves only affected and that generalized BFS is quite rare - it is just her experience but I think it is correct: this board has had slightly over 5000 members from all around the world and it exists for (AFAIK) around 10 years. That is incredibly low number. But then it all makes sense - that is why our neurologists are often puzzled by the symptoms or say they do not see cases like us. It is rare.

Amy, what you have shown me does not look like an atrophy. Atrophy is not that focal and it does not change the shape like this. In the real atrophy, the surface would change, it would become wrinkled and wavy but the overall shape of the tongue would not change much. And I repeat, your gums are bulging a bit in the place where this "atrophy" is located when your tongue is resting. Be this an atrophy, it would be twitching more or less all the time.
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Re: Tongue twitches - can be felt

Postby Sadface on August 19th, 2014, 6:42 am

But I guess the only people who go to a neuro have googled twitches and seen the worse!
It's likely that I would have twitches away without a care in the world, until I stumbled across an MND site when googling!
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Re: Tongue twitches - can be felt

Postby bobajojo on August 19th, 2014, 6:44 am

This is such BS. I don't know where you guys are finding these neurologists but they are contradicting just about every other neurologist in the world. I can tell you that the Mayo Clinic and MGH do not care where the fasciculations are and have said it is "quite common" to have visible twitches throughout the body (not just the calves).

I was hanging out at the beach with my mom this weekend and I could see her feet (tops and bottoms), calves, thighs all going nuts with twitches. Worse than mine. She said she never feels them in her legs but she gets them a lot in her arms and back. She has never worried about them. That's why there are only 5,000 people on here. Not many people freak out about a benign symptom the way we did.

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Re: Tongue twitches - can be felt

Postby TwitchyDoc on August 19th, 2014, 7:13 am

Matt, I too think that those who cannot feel their fasciculations might constitute quite a significant number but I would be really interested what Mayo considers "quite common". Pamela Shaw is a professor of neurology, she authored several textbooks for neurologists and I do trust her. The same goes for Martin Turner (specializes in MND). Neither encountered patients with BFS and generalized fasciculations. Remember that even. prof. Carvalho and Eisen did not get enough patients to conduct a study - so clearly, generalized and severe (lets say a twitch every few minutes) BFS is pretty rare.

I find it quite interesting that according to Eisen, BFS may be reccessively inherited - which is confirmed by Matt and probably me, as my grandfather has had fasciculations for at least 12 month (I noticed last summer).
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Re: Tongue twitches - can be felt

Postby Sadface on August 19th, 2014, 10:44 am

A friend said to me: look at my hip twitch.
My husband shows me his thigh twitch.
Neither have had neuro or GP app about this.
They get them, they go, they forget about it.
My understanding was bfs was the same kind of story but mire frequent and in more places.
Fuelled by anxiety the twitches continue and spread.
That's why I was kind if list about calves only.
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Re: Tongue twitches - can be felt

Postby Pascal35 on August 20th, 2014, 2:29 am

OK TwitchyDoc,

Pamela Shaw wrote to you that BFS is only in the calves and feet.
So what did she write about Twitching in many areas of the body?
Is she claiming that this leads to ALS or other neuromuscular conditions?

I suggest you provide full information about what you are saying rather then just make a statement which is misleading and spreads panic to everyone here.
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Re: Tongue twitches - can be felt

Postby TwitchyDoc on August 20th, 2014, 2:36 am

Pascal, you take things out of the context - she did not say "BFS is only in lower legs", she says the HER patients present this way.

The quote does not spread panic to anyone (as you can see...). She simply wrote me her opinion based on her experience, stating that generalized BFS is rare and that all her patients have only calves affected. She did not elaborate on that any more. She only implied that she saw cases like that with neuromyotonia..and that was all she said on this subject.

The statement is clear, if you see it as a misleading one, you probably did not read all the posts or just did not understand.
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Re: Tongue twitches - can be felt

Postby Sadface on August 20th, 2014, 3:39 am

I think she's a neuro close to me, maybe I should get a referral and see what she suggests mine are.
I get them everywhere....no where I haven't.
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Re: Tongue twitches - can be felt

Postby TwitchyDoc on August 20th, 2014, 3:54 am

Amy, that would be wise and interesting. But again, your tongue does not show any fasciculations. But if you have true fasciculations all over, it might be interesting to see what she says ;)
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Re: Tongue twitches - can be felt

Postby Sadface on August 20th, 2014, 4:36 am

I just have to get past my GP first. That may not be as easy! :?
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Re: Tongue twitches - can be felt

Postby Sadface on August 20th, 2014, 4:40 am

Ps
Am I right in that twitches can be twitches without being true fasciculations?
I thought the fascuculations were only classed as them if emg said so.
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Re: Tongue twitches - can be felt

Postby TwitchyDoc on August 20th, 2014, 5:48 am

There are different types of abnormal movements. Fasciculation is the one where only one (but as recently suggested, maybe even more) motor units fires. Hence, the muscle does not move as a whole. Myokymia manifests as groupped fasciculations, producing rippling, wavy movements going through the muscle.

Sometimes it is impossible to tell clinically whether the phenomenon is rapid fasciculation or myokymia - only EMG will tell.

In general, twitches can affect the whole muscle, causing e.g. your arm to suddenly jerk. Twitches occuring just individual muscle bundles are fasciculations. Also, no, twitching inside of a muscle not strong enough to move the limb is fasciculation and you do not need EMG to confirm. The fact they occur in resting muscle and their typical appearance are enough.

in EMG, fasciculations are called fasciculation potentials (FPs) and they might be detected in muscles which clinically do not have any fasciculations. This is beacuse FPs might occur in deeper muscle bundles and hence they are neither seen nor felt.
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Re: Tongue twitches - can be felt

Postby Sadface on August 20th, 2014, 7:07 am

Aw I dunno. I have ones where my leg moves, ones that ripple I see, ones which pop all over my body!
Some shakes, tremors etc etc

I'm a professional but not in neurology so guess I need not try to figure them out!
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Re: Tongue twitches - can be felt

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