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tmarino

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Just when I think I got these fears under somewhat control something happens. Just a recap some 32 monts ao I developed a twitch on the front right side tip of my tongue. It would come and go. I could even make it do it. I went to both my doctor and the Neuro. They did all fo the test including an EMG of my tongue ( this was done about 25 months ago) and it came back normal. I saw my Neuro for over 2 years and he finally said to come back when my wife says so. No one could tell me why my tongue twitched. They all said it was not due to ALS. In November of 2009 my wife and I both got the Flu after getting our flu shots. I went to bed with a Halls cough drop in my mouth. I woke up the morning with it still in my mouth. The top of the right side of my tongue was twitching. It was actually pulling the right side of my tongue back. Needles to say this freaked me out. I called the doctor and he saw me right away. Unfortunately by the time I got there that afternoon the twitching had stopped. He said Tom your tongue looks perfectly healthy and not to worry. Every once in a while my tongue would still do this but I learn to lie with it. In February of this year I had a follow up with my ENT who examined my tongue. These where his exact words your tongue is healthy and there is no signs of muscle wasting. My GP saw me this past Monday to follou up with me because I am on 1mg of Valium three times a day. He said it would help me relax and reduce any muscle spasm. He looked at my tongue and said it was fine.

Tuesday afternoon I started getting these sharp pains in my tongue. I looked in the mirror and could see the twitch on the top of the right side of my tongue and it was pulling te front of my tongue back. These twitches came back when I was eating or even speaking and sometimes not doing any thing. I still had them on Wednesday so I called the Neuro who saw me Thursday Morning. This time he saw the twitches. They ranged from the big ones to the little ones in that spot. They are not constant. I can make my tongue to di. He had me open my mouth for about 3 minutes with my tongue resting and said that it was quite. He said this was not an ALS type twitch. I said to him sometime I can feel it and some times not. I also menteined that I notice at the times the bottom portion of the groove in the middle of my tongue was closed sometimes when I stick my tongue out ( like the two sides are stuck together) He said Tom your tongue looks healthy and he gave me Cymalta to take to calm me down and said to cOme back in 4 weeks. He told me that if it was ALS after 32 months I would not be speaking and more than likely on a ventilator.

Has anyone here had any of these symptoms? I am so sorry to bother you all. I have ner been such a baby in my life. These Tongue twitches and thoughts of ALS have just stricken a fear in me that I cannot shake. In fact just right now I got one of those big twitches and now it is calm for how long I don't know.
 
your tongue is fine and healthy,you are fine and healthy.
some people are just natural twitchers thats all there is too it,getting plenty of fluids and not too much salty foods could help.
the doctor was right,if it was bulbar als you would not be able to talk,eat or breathe too good by now.
keep taking the valium,relax more and enjoy life.................you may get hit by a bus tomorrow.
 
I feel your pain! Mine has been doing it for about six months except it's on the bottom.I can make it do it sometime too.Sometimes it doesn't bother me and sometime it does.I haven't started slurring or had any weakness.So I put it in my mind that something should be weak by now but it isn't.I don't think yours is ALS either.It's important to have a positive attitude.When you wake up just think hey I'm speaking and eating fine so I'm good and happy to be alive.Stress will kill you ...
 
You don't have ALS. Listen to the doctors. Better yet, disconnect your computer, go outside. Breathe deeply. Forget about this website.
 
Hey tmarino--

Tongue fasics have a worse reputation than other twitching, but it sounds like you're fine. My tongue twitches have been much worse lately, but I've had symptoms for over 3 years and I don't have ALS. On the BFS (benign fasiculation syndrome) boards, tongue twitches are fairly common and no one over there has an ALS diagnosis.

It sucks, it can be scary, but it sounds like you're doing just fine.
 
Andy, thank you for you replying. What scaring the heck out of me is that a twitch is now on the top of my tongue. You have had the symptoms for over 3 years how have you manage to keep your sanity? Like I have said I have never question a Doctor before this.
 
You know, I have had ALS symptoms for almost three years and now that I can't eat drink or speak I have to say that I have NEVER had a tongue twitch. I had tongue wiggles, the bag of worms thing, but never a twitch.

In my opinion and experience a twitch is a twitch is a twitch, not some harbinger of doom. But that is just my opinion and what do I know? I rarely comment here and maybe that is a good thing.
 
Hi Tmarino,

I think everyone's tongue twitches to some extent. I know mine does and when I asked the neuro about this (mostly because of twitching elsewhere and weakness and cramping), he said the twitches were not the type seen in ALS. He described a wriggling, bag of worms appearance, which my tongue does not have. the tongue is all muscle and it is going to twitch when you stick it out. mine also does this at rest. but it is not this wriggling, over the surface kind of twitching that people with bulbar problems have described here.

Sandra
 
(SIGH)

..... Like Barry, I cannot feel my tongue moving with fasciculations. I can feel it when it twitches, which it occasionally will do, toward the right front. When I took Mestinon, it made it twitch a LOT, it looked like little moving dimples all over the surface like raindrops hitting it, and I did feel them more. I would not know my tongue moves if I did not look at it. Most of the time I'm actually kind of surprised when I do see it, because I don't think about it one way or the other.

I told Glen recently, in a private conversation, that I don't think my tongue looks like a bag of worms so much as the surface appears to jiggle all of the time like its soft set jello. However, when I just now took this video, in retrospect, it worms around more than I realized.

This is with my tongue at rest in my mouth...

YouTube- tongue
 
Rose, I could hear Ernie in the background!

Your tongue certainly does move around a lot!

Mine behaves itself and has perfect form!
 
PZ,

Ernie is on active squirrel patrol... Always. If we're ever about to be invaded by them, it won't be a surprise attack, thanks to "The Squirrelinator" :)

I still am amazed that I posted this of my tongue on the internet LOL
 
Rose, I can't believe it either but I must say your tongue sure does wiggle!
I would do a video too but as my tongue doesn't move at all anymore it would be pretty boring.
 
Rose, you should add some background music to your "Tongue Video".

Anybody have any suggestions? How about the theme from"Jaws"?

(Pun intended...)
 
Yeah, well that's the last unflattering video/photo I'm putting on here for a while. I was just following up on your post, Barry.

Kim, very funny. I think though, if one WERE to put some mood music in, that it should be more of an undulating kind of rhythm.... Led Zeppelin's Kashmir perhaps?
 
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Undulating... hmmm..

How about Ravel's "Bolero"?
 
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