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vmd

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I know this issue has been discussed before, but I would like someone to refresh my mind. Thank you for indulging me.

For those PALS or CAD (currently awaiting diagnosis) group with tongue fascics, could you please describe what tongue fasciculations feel like to the person? Are they felt, seen, or both? Does the tongue ondulate or does it twitch? Are there other symptoms like biting your tongue, etc? Thank you.
 

Jamiet

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At first i couldln't feel them. I could see them, in the bulk of the tonuge. It makes little dips, like apin pusing on the middle. then, i felt like it was vibrating at night, but this starteda month or so ago, or 5 months after the twitches.

Yes, i bite my tongue all the time, i bite my lip all the time. It's like my jaw just jumps sometime when i bite my tongue, almost like a reflex.


It also hurts alot....




rgds,


jamie

vmd said:
I know this issue has been discussed before, but I would like someone to refresh my mind. Thank you for indulging me.

For those PALS or CAD (currently awaiting diagnosis) group with tongue fascics, could you please describe what tongue fasciculations feel like to the person? Are they felt, seen, or both? Does the tongue ondulate or does it twitch? Are there other symptoms like biting your tongue, etc? Thank you.
 

Wes_E

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I can't feel it but can definitely see it twitching around. I haven't bit my tongue...YET.
The funny and sad thing is, my first neuro never noticed it. It was my ENT that first noticed it and sent me to an ALS specialist.
It is also beginning to atrophy. I slur really bad and will probably lose my ability to speak w/i the year.
This disease sucks but at least not enough is being done! A little tongue in cheek humor. Plese pardon the pun
 

brooksea

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I talked to my husband about this.

His response was: "I call them fascinations, because when I or anyone else looks at my tongue, we are fascinated!"

He does not feel them and he doesn't bite his tongue. And sorry to say, when he showed me his tongue to demonstrate, the atrophy has progressed.

Believe me, if your tongue is twitching you are gonna soon sound drunk!

His tongue just twitches- no undulation.

CJ
 

brooksea

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annmarie-

The tongue is a very big muscle. Most people do not realize this, at least we did not until ALS came a knockin'.

The quivering does not stop, it is constant, as the neurons are mixed up and can't communicate properly with the muscle. This will go on til there is no muscle left to try to communicate with.

My husband did not know his tongue was involved at all - we didn't realize the "depth" of the disease. The first nuero we saw asked him to stick his tongue out, that is when I started crying.

3 months - I dunno. My husband had a serious choking episode 12/05 and couldn't even swallow his own saliva. He was diagnosed (1st opinion) 09/06 and it seemed like about 6 months from 12/05 til I thought he was maybe imbibing on the way home from work. LOL But you have to remember everyone is different. My husband still walks fine. But I think he is soon going to loose his speech, Hands are going...

annmarie - I must thank you for being so sensitive to others here.

CJ
 

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When my Neuro checks for tongue fasic's he has me hold it in at rest in my mouth. If you stick it out you are straining the muscle and of course it will quiver. When I stick it out he has me move it as quickly as I can side to side and then push on his finger from inside to check for strength. Is this what your doc's are doing?
AL.
 

brooksea

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Yes AL, that's what husband's neuro does. When the first neuro checked his tongue I didn't mean like sticking it all the way out, rather like opening mouth, tongue to edge of lips and then back at rest. Then he did the strength test with tongue going from side to side inside cheeks.

Now husband's tongue is looking kinda pointy and gelatinous , I assume this is atrophy.

We go back to Emory 07/13. Will see where he's at on the scale then.

CJ
 

vmd

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From what I gather, then, the sensations of tongue fasciculations are somewhat different from fasciculations in other muscles. When I feel the fasciculation in a muscle, it is a clear sensation of a twitch or a few twitches one right after the other. Some of you describe a "quiver" effect. By quiver do you mean ondulations that can be seen in the tongue or do you mean the tongue jumps around in the mouth? Also, what would be the difference between a tongue tremor and a fasciculation, then? I wonder why some of us bite our tongue? Also how common is tongue pain in those of us who have tongue complaints?

CJ, when you say his tongue twitches, does the whole tongue jump around in the mouth, is that the impression you have when you see the tongue, or does the tongue remain stationary, but you can see movement in the body of the tongue?

Thank you.
 

brooksea

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Vmd-

No the tongue doesn't jump around in his mouth. It remains stationary and the fasciculations are spontaneous as the motor neurons are firing.

It's kinda like there is an elastic thread inside his tongue that pulls and releases the surface of the tongue at different intervals.

I came across a video on the web of the tongue with fasciculations, but can't find it right now.

My husband doesn't have any pain in his tongue.

CJ
 

vmd

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CJ:

Let us know if you find the video. Thank you.
 

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Iv'e seen about 40 different stories on tonge fasics. It can range from jumping around to barely twithcing as Jimercat describes.

The quivering is when you stick it out, the edges "quiver", this is from the reduced muscle not being able to control the tonge. it's not twithcing that casuses quivering

It will quiver on the edges and look like "wiggling" in a "wave motion form the outside tothe middle, and really fast. You will be able ot tell if it's quivering, it's very distinguishable.

rgds

jamie
 

Jamiet

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Lelise,

is this lady normal in her exam? it looks as if she has normal reflexes? is her tongue normal?
 

vmd

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Leslie:

Thanks for posting the videos.

Jamie:

If tongue fasciculations have so many different appearances, perhaps it is best to let the neuro determine whether I have them or not, eh?

It seems, however, that if there are tongue fasciculations present, one should also have other bulbar-type symptoms.
 

vmd

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annmarie:

Yes, I have read something similar about the tongue fascics and the other bulbar-type symptoms occurring in some form of temporal conjunction.

Another question: I believe, it was you, but did you also mention that fascics in other parts of the body with ALS are more likely to occur after use of the muscle, as in the case of exercise? Or is it the case that fascics are spontaneous and are not trigered by exercise activity?
 

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[email protected]#% it I just can't find that video. It was perfect for showing someone with bulbar onset. Oh well...

And yes Annmarie, Leslie is right - the drooling ect... will be there at some point.

All of the fasciculations are spontaneous and the tongue is a long muscle, so swallowing and chewing and speech will be affected since the whole muscle is being destroyed.

It's a year and half since my husband had that swallowing episode and now there is usually saliva at one corner of his mouth. The more exhausted he becomes the more saliva there is and the more slurred his speech becomes. His facial expression has changed too. Kinda droopy looking. Now when he talks it seems he takes such an effort to get the words out! And sometimes sounds like he's mad when he's not.

This really sucks

gotta go now

CJ
 
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