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Tongue twitches - can be felt

PostPosted: July 1st, 2014, 12:14 pm
by joycecaroll
Ok. So there SO much on the web about this. Some doctors claiming true fasciculations in the tongue is never benign, some claiming that since the tongue is a muscle it can twitch just like any other muscle.

What's the truth here?

I have them in my tongue. The last a couple of seconds. They come a few times a week. I've never seen them, I just feel them.
I'm so worried. I wouldn't be if I had not read about benign fasciculations of the tongue not existining.

Can the tongue twitch without it being ALS?

Re: Tongue twitches - can be felt

PostPosted: July 1st, 2014, 12:22 pm
by joycecaroll
I don't have BFS. I twitch in other body parts as well, but no BFS diagnosis.

Re: Tongue twitches - can be felt

PostPosted: July 1st, 2014, 12:33 pm
by TwitchyDoc
I have had tongue fasciculations for 4 years. I see your frustration, I have been too worried about all these statements in book saying what you mentioned (about these being not bening).
But 4 years and I am here...there are others like Matt (Bobajojo).

Have your neurologists seen them? Maybe what you have is just tongue tremor. many people confuse that for true fasciculations.

Re: Tongue twitches - can be felt

PostPosted: July 1st, 2014, 12:40 pm
by joycecaroll
Can you get tongue tremor just on the side of the tongue? Like not the whole tongue?
Mine is never the whole tongue shaking like that, just a part of it. Like a pulsating feeling.

No, a neuro has not seen it.

Re: Tongue twitches - can be felt

PostPosted: July 1st, 2014, 12:47 pm
by TwitchyDoc
Fasciculations of the tongue look like very small areas twitching (a few millimeters). It is hard to tell without see it. If the whole surface is tremoring while the tongue is at rest (never assess the tongue for fasciculstions while it is protruded), it might be myokymia.

Re: Tongue twitches - can be felt

PostPosted: July 1st, 2014, 12:54 pm
by joycecaroll
But if I can feel them, doesn't that mean they are not related to ALS? Or that they are not even true fasciculations?

Re: Tongue twitches - can be felt

PostPosted: July 1st, 2014, 12:59 pm
by TwitchyDoc
It does not really matter whether you see/feel them or not - I can feel mine and see if I look to the mirror and they are true fasciculations. I have a video on YT but cannot send it now, not enough time.

If you have no other issues, the chances for it being something nasty are pretty slim.

Re: Tongue twitches - can be felt

PostPosted: July 1st, 2014, 1:02 pm
by joycecaroll
One last question?

Does ALS fasciculations come and go? Since mine are just a few times a week, shouldn't I be able to relax?

Re: Tongue twitches - can be felt

PostPosted: July 1st, 2014, 6:50 pm
by raindog
joycecaroll wrote:One last question?

Does ALS fasciculations come and go? Since mine are just a few times a week, shouldn't I be able to relax?


Yes relax entirely as you are OK Nothing comes and goes with ALS as each day is marginally worse than the last due to the nature of the disease and death of motor neurones. When i was getting quite strong tongue twitches and a bottom lip spasm i looked on youtube and saw a video called Dancing tongue when i saw that vid i was assured i had nothing like ALS tongue twitching ....also the speech becomes slurred due to not being able to move the tongue to pronounce the words.

Re: Tongue twitches - can be felt

PostPosted: July 2nd, 2014, 1:52 am
by Arkansan
Huh, never even thought of this one. Ever so often I will go through a phase of getting the odd "jump" or thump on my tongue. So do others here get this? Is it a concern for me?

Re: Tongue twitches - can be felt

PostPosted: July 2nd, 2014, 3:07 am
by joycecaroll
Arkansan wrote:Huh, never even thought of this one. Ever so often I will go through a phase of getting the odd "jump" or thump on my tongue. So do others here get this? Is it a concern for me?


För me it's like a pulsating feeling. I'm going do the dr tomorrow, I'll let you know what he said.

Re: Tongue twitches - can be felt

PostPosted: July 2nd, 2014, 4:28 am
by raindog
Arkansan wrote:Huh, never even thought of this one. Ever so often I will go through a phase of getting the odd "jump" or thump on my tongue. So do others here get this? Is it a concern for me?


yes and and no :wink:

Re: Tongue twitches - can be felt

PostPosted: July 2nd, 2014, 7:48 am
by joycecaroll
Tomorrow I'm going to my GP and I want to be prepared. Can I trust his oppinion about my tongue twitches or should I request a meeting with a neuro?

If my GP looks at my tongue and I get a clear neuro exam, should I be happy with that or should I request an EMG?

Is there anyhing in particulair I should ask my GP?

Re: Tongue twitches - can be felt

PostPosted: July 2nd, 2014, 8:33 am
by TwitchyDoc
Gps are not well trained to assess tongue fasciculations or any other rather rare neurologic symptoms. Sure you might be lucky to have an extra educated one, but generally this is out of the scope for GPs.
Pay a visit to a neurologist (not necessarily an ALS specialist) to put your fears to rest.

Re: Tongue twitches - can be felt

PostPosted: July 2nd, 2014, 8:42 am
by joycecaroll
But would be he be able to answer if tongue twitches are normal or not?