Constant Tongue Twitching--Need Advice

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bfhopeful2

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a lot of you here already know my story, but there has been a minor change. Most of my twitching has died down but off and on I am getting a constant twitch in the side of my tongue. It fires off a few times a min and I can see it and feel it. It is not quivering. No other symptoms. I've had twitches there before but only here and there never constant. Anyone here have issue? What has dr said about it?so far it's been on same side of tongue almost always in the same spot.
 
Hey you, its good to see you. YES, I had this big time for about 2 months back when I was in the thick of things. I could see it, I could feel it, and I stared at my tongue way more than anyone should :LOL: I did bring it up to my neuro and he kind of giggled when I showed him. I asked him if we should stick an EMG needle in it and said said there was no need. He said my tongue was a muscle just like any other muscle in my body and its going to twitch while I'm dealing with this stuff, and he assured me that most people with ALS have no clue that there tongue is fasciculating. They show up or come in because they cant form words anymore or cant swallow anymore without choking, and they are always shocked when the doc points out the fasciculations.So I think you are good. It took me learning how to ignore it for mine to stop. I still get an occasional twitch on it everyonce in a while but I've gotten to where I just blow it off. Good hearing from you, Take careRobynn :D)
 
I do not have it every minute but everytime I get it, my anxiety immediately increase with the buzz feeling. I cannot stand it, do not know what to do.
 
TwitchyMD, I dont mean to sound harsh at all, but you have to find a way, somehow, to just ignore it and tell yourself, it means nothing. No different than any other muscle you have that twitches. It means nothing really. Just tell yourself that, it means nothing. :D)
 
I am a daily tonguetwitcher.Initially [being a md physician] ,i was in very much panic regarding tongue fascics coz many neuros[not all]consider it as not a good sign but i think we shouldnt take it unless there is dysarthria[difficulty in speech],dysphagia[difficulty swallowing] and tongue wasting[atrophy].Every neuro will not give it importance unless you have above things.There r lot of members in d forum having only tongue fscics since so many years without any problem.I have adjusted myself and i can verymuch ignore it.These members gave me confidance,and iam very thankfull to them.....takecare.......baily.
 
Well I can tell you that I have had the tounge twitching years ago and it went away on it's own. It has always been on the edge and I can feel the pulsating. I know that my neuro says that tounge fasiculations are usually a sign of NMD, but they can be benign. The thing is that he says there are differences between true fasiculations and twitches. He says what I have are not true fasiculations. I researched this more on the ALS forum and came up with some interesting information. From the members there they say that they can not feel the twitches. They all have trouble talking, swollowing etc. They also said that the twitches start in the middle of the tounge and then wave out to the edges, it was described as waves and a bag of worms. I just have a single place in my tounge that twitches. Obviously it is what it is, but this information is helping me cope for the time being.
 
PrayMantus: And what did your neuro (who thinks they are usually sign of MND) think about your case? It is true that most PALS do not feel them but I also know that some do.I do not know whether twitch is something else than fasciculation - do you have clearly visible flickering part of tongue? I do, while the rest is completely at rest, one place just twitch like someone pulls a string attached to that spot.But as we are not alone with this symptom, I believe it is benign.
 
Yes, it happens just as you described. My doctor looked briefly at my tounge checked jaw reflexes and said I was fine. His specialty is MND so I am sure he did his job considering he has been following me for almost 2 years. He kind of dismissed it. Said come back in a year if you want. Told me several times I have nothing to worry about and sent me on my way.
 
Yeah, I really do not pay attention to any twitching I have expect for the tongue..especially because its so annoying buzz. Interesting that your doc did not explain to you what he thinks about it if he does not believe in benign tongue fasciculations. I am not OK with this one either..I can hardly sleep. Hope it will disappear.
 

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