Tongue twitching question

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jiujitsu

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I know you all hear about this frequently. I have read through the archives and get mixed ansewrs as everyones case is different. I have had body wide twitching for about 3years and have had 3 emg's. Most were clean except the one in the middle show some chronic changes stemming from L5/S1. On the last emg they did not see that. I am not too concearned with the body wide twitching anymore, I guess I just kind of got used to it. What is bothering me is a pulse like twitch that I get here and there in my tongue. It usually comes on only a couple times a year and stays for about 6 hours. Recently though it has come more frequently and stayed longer. It usually is closer to the tip of my tounge and literally pulsates like a heartbeat. It is probably no larger then a pencil eraser. My concern is that my doctor does not beleive in benign tongue twitching but can offer no explaination to what it is. I did make another appointment with him and I am not trying to diagnose over the internet. I am just wondering if anyone else had this before bulbar onset. Thank you all for any information provided.
 

jiujitsu

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Is my question just not that interesting, or incrediably stupid?
 

Al

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Slurring of speech is usually the first sign. What you have is not. Let the Doc decide.

AL.
 

jiujitsu

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Thank you sir. I guess the anxiety gets the better of me sometimes. It is a month before my appointment and I was trying to get some positive feedback to hold on to. I am a little ashamed actually. I shouldn't come here for that. I am sorry.
 

Alyoop

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If you had ALS in the bulbar region, then after 3 years you would not be talking 100% if at all.
You have had more EMGs than you need with none showing ALS.
Many people seem to have benign tongue twitching, yours do not sound like fasciculations. There are some doctors that do not believe in benign fasciculations in the tongue, but many who do. If you had tongue fasciculations for years and they were caused by AL's, then you would probably have evidence of atrophy by now.
I don't understand why you would go back to the doctor yet again. Are you still walking? Are you able to feed yourself?
Why go to the doctor with 3 good EMGs and just a little bit of tongue twitching?
 

notme

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There are only so many ways to say clear EMG = no ALS. A little twitch is nothing to worry about. You're letting your ALS fear conttrol you. Relax and enjoy the holiday season.
 

trfogey

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Is my question just not that interesting, or incrediably stupid?
Given the fact that you are posting about something that, by your own admission, occurs a couple of times a year and and that you are trying to connect this rare event to ALS in some way? I vote for "incredibly stupid".

Why do you want to be diagnosed with ALS so much? You got a diagnosis of BFS 22 months ago. In that 22 months, you've shown nothing that resembles ALS progression in any way. Yet you are just as obsessed with your twitches as you were two years ago.

Your problem isn't in your muscles -- it's in your head. You need to do something about that.
 

jiujitsu

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I agree with all of you and no I do not want ALS. I have an obsession with it yes. Not because I think it would be cool to have, but because I watched 3 people die from it and 2 of them I was extremly close with. One of those two was a man at the age of only 31 who returned from the war to get this wonderful news.

I was diagnosed with BFS two years ago and have actually got pretty ok with my twitching. The tongue thing freaked me out because my doc told me that tongue twitching usually means something sinister is brewing. However I am starting to think he means when the whole tongue twitches non stop.

I appreciate all the feedback. I really do. Thank you very much.
 

jiujitsu

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By the way I know that my bodywide twitching is not related to ALS in any way. I would have been in bad shape by now if any shape at all, I just fear that the tongue thing is a seperate issue.
 

Bliz

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Hey, I am nearly 5 year twitcher and was too scared of tongue fasciculations. It is true that tongue fasciculations are not so commonly benign as e.g. calf ones but they do exist, thought many neurologists have never seen it.
However I do not agree when your doc said "something sinister is brewing"...it would be pretty obvious by the time your tongue has fasciculations caused by ALS. Also malignant tongue fasciculations do not disappear and go non stop on multiple places as mentioned by many patients here.
Have your doctor seen them? I was told by neuromuscular specialist that it is unusal but definitely possible as no axon is immune to hyperexcitability. Many neuros think tongue fasciculations=ALS (or Kennedy) but its also present with Isaasc syndrome or hypercalcemia, so definitely there are "benign" causes.
For me, its nearly two years and my tongue has no issues at all. I get them every day!
 

BarryG

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My tongue has been dead for three years and never once had a twitch.
 

jiujitsu

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Thank you for your replies. I think my doctor and many else out there don't see many people for tongue fasics that don't have other problems and that may be why they feel that way.
 

wright

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. . . or, to follow-up with what you just said . . . people don't really care about their tongue twitching (or any other muscle twitching in the body) when they have absolutely no other signs or symptoms, so docs don't really see those people (who are in the majority, I'm sure).
 
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