Old 08-08-2009, 02:50 PM #1 (permalink)
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Default Scared! Tongue is twitching

Hi,
For the past three days, my tongue has been twitching. I can't feel the twitches at all. When I open my mouth, with my tongue resting on the bottom, I can see a twitch go off about every 30 seconds, but feel nothing. Three days ago, it was in the middle of my tongue. Now I just see tiny flickers on the tip, and I can't see the one that was on the middle of my tongue. It doesn't happen every second, but I definitely see a dip about once every 30 seconds. They are very tiny. For those with tongue fascics, is this what you experience? Or is it all over the tongue and constant? I'm really scared.
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Old 08-08-2009, 06:46 PM #2 (permalink)
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Michelle, Benign tongue fascics are extremely common, and are nothing to worry about unless there are preceeding symptoms of weakness, slurred speech, etc.

What you describe is not what my tongue fascics were like. (Now that my speech is gone and my tongue is immobile, the fascics have stopped.) I had experienced slurred speech for about 9 months when an ENT noticed my tongue fascics, and recommented a neurologist. In my case, the fascics were constant and covered every surface of my tongue, including the underside. The entire surface was quivering like every molecule was alive and twitching independently. There was no pattern and I could not feel them.

If you are not having speech or swallowing problems, may I ask why are you examining your tongue so relentlessly? If you are having some anxiety issues, this kind of fixation ... tracking every twitch and tic ... will make it worse. I mean that literally ... you can amp up your anxiety levels by fixating on meaningless "symptoms" and then your anxiety levels will amp up your "symptoms" and on and on.

Best to nip it in the bud.

We're having a glorious August, aren't we? Hot afternoons, cool mornings and nights. Go to the beach and relax! That's an order!
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Old 08-09-2009, 05:18 AM #3 (permalink)
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I agree with Beth...I was aware of slurred speech and some swallowing issues, and liquids spurting out the wrong way.. I then saw my GP who saw my fascilations. All over the tongue, tiny little ones that could not be felt, looked like my tongue was absolutely full of tiny wriggling worms, not just one or two twitches. Does not sound like als to me...everybodies healthy tongue moves a little if you look at them.
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Old 08-09-2009, 07:51 AM #4 (permalink)
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Hi Michelle

Beth and Jennifer describe things exactly as happened to Mark.

My husband Mark didn't notice his tongue fascics until they were pointed out to him - he originally sought help for slurred speech and it was his speech therapist who noticed them.

I can only describe it as invisible fairies dancing all over his tongue, certainly no twitching in one particular place.

Beth - you say that your tongue is completely immobile now - is that what happens? - Mark's speech is now very poor (only us that live with him can understand some of what he says) but his tongue still has fairies.

RACHEL
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Old 08-09-2009, 12:07 PM #5 (permalink)
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I too first noticed my wiggly tongue when it was pointed out to me by the neurologist that I went to see for my slurred speech in 2007. I had not noticed it as I didn't look in my mouth much and I did not feel anything. As with the Beth, Jennifer and Mark my tongue fasics were constant and all over my tongue, not in any one area.

My tongue is not quite immobile, I can still move it a little bit but not enough to be any real help with eating or talking. Only my family can understand me now and even they have problems so I rely mostly on my talkers now. I have been working on mental telepathy but I think that I need a bigger transmitter and better receivers!
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Old 08-09-2009, 12:28 PM #6 (permalink)
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Rachel, I can move the tip of my tongue forward a little past my lower teeth, and right and left about a half inch. Cannot move it up at all.

The atrophy is the surprising thing to me, as my tongue surface is rutted and red. It narrows to a point in the front. When I see other people stick out their tongues, it is so gross ... they have these big, pale pink slabs of meat in their mouths like cows and it actually seems repulsive! Ewwwww ... (My tongue is now so dainty!)

I can't remember exactly when my speech disappeared completely ... sometime between December and March of this year, I think. One thing that is good about it: It is MUCH easier to communicate now that I have no speech and am not trying to speak. People adjust to the LightWriter and Dynavox voices very quickly. I think they (mentally) equate it to communicating with the deaf, and don't feel the need to patronize or speak to me like a child.

(On my DynaVox, by the way, I am using the male voice "Rich," a very deep baritone or bass. Not for a joke, altho it is a little kick to hear people's reactions when I say, "This is Beth," but because male voices seem to be easier to understand.)

Last edited by BethU : 08-09-2009 at 12:30 PM Reason: Barry ... your transmitter seems plenty big enough. Better work on the receivers!
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Old 08-09-2009, 02:17 PM #7 (permalink)
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Thank you everyone for responding. My twitching is close to the tip of the right side of my tongue. It is in one or two areas...almost like a tiny pulse. The rest of my tongue is completely still. I do have fascics in other areas though in my legs and arms and have for a long time. The tongue thing has just really scared me because I see the little pulse thing so frequently.
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Old 08-09-2009, 04:46 PM #8 (permalink)
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i had tongue fasics which are visible to my neuro 3 years ago. i still have them.

without slurred speech or severe weakness tongue fasics don't mean anything. 1 in 30 secs definetly means nothing. I am sure none of the persons who are diagnosed with ALS had tongue fasics alone as the first symptom.

Relax and if you cant just see a neuro. If you can not stop checking your tongue in the mirror like me (3 years ago) consider theraphy and medications for anxiety

best wishes
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Old 08-10-2009, 11:27 AM #9 (permalink)
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Thank you Polysaryo. Are your tongue fascics all over the tongue and are they contant? Mine seem to be only toward the tip and I can't feel them. Can you feel yours?
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Old 08-10-2009, 03:14 PM #10 (permalink)
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they are all over my tongue and they are constant and i can't feel them. after i worked as a caregiver to an ALS patient i started to check my tongue. I was confused when i first saw them. i visited a neuro and my physical exam was ok. i wasn't quite convinced so i visited an ALS specialist. He told me the same thing: Bening tongue fasics are extremely common and most people are not aware of having it.
I belive small tongue fasics mean nothing, definetly nothing. No ALS patient noticed tongue fasics first before they have weakness of extremeties or tongue.
If you check this forum regularly you will see that there are hundreds of people trying to diagnose themselves with the worst. Think that you are talking with a guy who thinks he might have ALS and the only symptom he has is tongue fasics (1 in 30 sec). This sounds crazy.
Once you look at an ALS patients tongue you will understand what i mean.
If you have issues visit a neuro. You can't diagnose yourself with patient stories. As ALS strikes in many ways every story is different. And as patients associate a lot of things before the onset with the information you get will not be helpful.
I regularly visit this website to read tips of the patients for my job. This job effects me very much, in good and bad ways.
I know how you feel when you think you might have this disease.
So stop visiting ALS related websites and stop checking your tongue on the mirror.
Visit a neuro and if you are not satisfied with it visit an ALS specialist.

Best wishes
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Old 08-10-2009, 07:02 PM #11 (permalink)
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Thank you so much for your reassurance. Has anyone experienced tongue fascics as their first sign?
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Old 08-10-2009, 09:13 PM #12 (permalink)
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I give up.
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Old 08-10-2009, 10:24 PM #13 (permalink)
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Sorry Beth. Anxiety has gotten the best of me. I will try to do my best and enjoy this beautiful August weather we are having. I was actually going to go for a walk on the beach this morning, but it cooled off too quickly. I am quite exhausted today. I had a major panic attack last night and ended up in the hospital with heart palpitations. I'm sorry if I have been repetitive on here.
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Old 08-10-2009, 11:14 PM #14 (permalink)
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Beth you continue to make me laugh out loud and shed a tear at the same time. You with the dainty tongue and deep baritone <g>. Take care you dear person.
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Old 08-11-2009, 09:19 AM #15 (permalink)
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My tongue is presumed to be doing well. I wouldn't know for sure, though, as I refuse to inspect it on an even annual basis.

In fact, my tongue is doing so well that I am thinking of transplanting some of my tongue muscles into my calf muscles (they cramp and do the twitch).

Love and world peace to all!

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