Tongue Twitching, Need Help Desperately

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TwitchyMD

Well-known member
Hi,Been doing not so bad recently...mas first tongue twitch has 7 months ago. And today, all of sudden, I felt twithing in the middle of my tongue..went to mirror and saw it :( Lasted for few seconds..I am down again, scared, desperate :((please help
 
TD, you know as well as I do, that a lot of us get tongue twitches occasionally. You should also know more than I do, that these kind of periodic twitches are not what they are looking for when they check the tongue during a clinical. There are some that even have constant twitching in there tongues and their docs are still not impressed and emg in their tongue was normal (I know one of these people personally and her tongue emg was spotless and all three of her neuros are saying its part of her BFS). You have nothing to fear. I myself do get an occasional tongue twitch or flutter on a daily basis, usually at least 3 times a day. I do my best to just ignore them because I truly believe once you become fixated on them, they will worsen, which is what happened to my friend from her, and she makes herself sick over this everyday even though her emg's were totally normal.Please dont do this to your self. You are ok, I promiseRobynn :D)
 
Robynn, thank you..however I have not said that the half of tongue where I do experience the fasciculations is less meaty and looks more "irregular". I am affraid if it is not beginning of atrophy. I do know how advanced or moderate atrophy looks like but never seen it early in its course.Combinations of these two factors just kills me.PS: If you left the board, nobody would answer....I am so happy you stayed.
 
Tongue twitches are very, very common. I can think of 100's of discussions about them on this board and they are no more ominous than any other fascic. Also, can you talk clearly or whistle? I ask, because when I was a kid, I came down with bell's palsy. I was at a football game and realized that liquid was running out of the corner of my mouth when i would drink through a straw. Then I realized I couldn't whistle anymore, and then came the slurred speech. That lasted about 3-4 months (pure torture for 7th grader) before it gradually subsided. When I was at my worst with BFS worry, I would always whistle to remind myself that my facial muscles were still working properly. No matter how bad the anxiety was, that whistling my music to my ears.Hang in there, things will get better. If you truly have loss of mass in your tongue, that has increased over the past weeks or months, go see your doctor. If you are like me, and over analyze all your features until they become abnormal in your eyes, work on the anxiety.Take care,Gary
 
Thanks Garym..btw you ever had clear tongue twitching? I cannot say I have muscle loss for sure but the right side of my tongue is a slightly smaller with a few little dimples but it is visible mostly at oblique light so the surface creates shadows.I am too scared to go to the doc because if he confirmed it is slight atrophy, then combination with fasciculations and bodywide fasciculations leaves ALS and possibly SBMA as the only possibilites.
 
ionyZarrion, I know but unfortunately tongue twitching, if malignant, has no cause with good prognosis.Has everyone had twitches in the middle of tongue or more places at once? I do not mean constant, just like twitching in more places for a few seconds.
 
i had a 6 month check up 5 weeks ago and i was feeling good up to about 2 weeks before my appoinment and i felt the tongue start twitching and then came the sensation of not talking right and so on and so forth. I was checking my tongue 50 times a day in a mirror, i was pushing on it thru my cheech, i was sticking it out moving it every direction and it would quiver and tingle and you name it. My neuro was very sympathetic and gave me the royal exam, even took the time to humor me and look at the quivering which he said every ones does. He then said i will perform the standard test of strobing the tongue and palet, then perform all the strength test and he said if all turns out good i had to promise him not to look at my tongue ever again and he would explain the whole process to me(he also said if he had a remote concern on what he saw we would do an immediate EMG of the tongue to further diagnose, but only if there was any indication of an abnormality). Well everything was perfectly normal, he explained that he knew before the exam that it was normal already just from me speaking but he wanted to ease my anxiety. He explained that the tongue is made of two halves and that if a problem was occuring one half would show abnormality first and if fasciculations were present caused by the damage, speech and swallowing would be profoundly affected well before then. He explained that this process is not slow but very aggressive. I told him that i feel a constant buzz in the tip and he said it is because your constantly doing things with it that are not normal and your mind is way too focused on it. He said prior to all of this twitching had you ever given the feeling of your tongue a thought other than when you bit it or burned it. obviously the answer was no and i haven't looked at my tongue since Feb 20 which is when my appointment was. I still feel the buzz at the tip hear and there but since i don't do all the other crap it is a thousand times better. I hope you don't waste anymore of your time worrying about this, i know it isnt fun but you just have to move on.
 
BramTyBram, thanks but from your reply I assume you never had tongue fasciculations. I mean visible flickering on a small portion of muscle which you could see and feel.
 
i had exactly what you described and he turned out the lights and used the light to evaluate them, he said he saw a little movement on one side and asked if i felt it and i said yes and said it was still normal.
 
Thanks for clarification, from your post I though you just feel the buzzing. It was terrible one I got yesterday, like on the thumb - 5x5 milimeters in the middle of my tongue twitched at least 10 times. Later I saw one that I could not feel on the edge.Did he say its tongue fasciculation?
 
i hate to put this on here cause so many people are suggestive but the facts are the facts, he said it could have been a fasciculation but a fasciculation he would order an emg for would be constant and wave like and would have associated weakness. He still contends that most of the twitches are anxiety induced and can show up in any muscle at any time for any length of time. Without weakness they mean nothing from a clinical aspect. He is also very emphathetic to the fact that it is not normal to have this stuff happening and believes there has to be discomfort with it, but he stands by that they are not indicative of any neurological disease without clinical weakness and reflex change. (Which he said would then be confirmed by an EMG) He has seen many people with them over the years and not one time have they proven to be anything other than annoying to any of his patients. He told me everyone of us thinks the same thing, THIS IS THE BODY SIGNALING SOMETHING VERY BAD IS ABOUT TO HAPPEN. He assures me that is not the case. The mind is just very powerful and when you engage it where it doesnt belong, your in for a not so fun ride. This guy has been around almost 30 years, he has seen it all and diagnosed and treated every neurological condition. I am very persistent when i am at the doctors office and i asked a lot of questions and he laid it out in laymens terms, if he thought any of my symptoms had any potential severe health implications he would look me in the eye and tell me and make recommendations for the second opinion. I also asked him about all the walton report stuff and showed him a couple of the other internet findings and he reviewed and discussed with two Neuro as U of M ALS center and they all said the same thing. Fasics without weakness are not indicative of MND period. They concluded what DARR mentioned it is someone trying to put together a hypothesis that they can acquire grant money for, also none of them had ever heard of the Walton Centre either. they had to look it up to see if it was a real medical facility. hope that helps.
 
Thank you for such a a long asnwer, I do appreciate it much! Just one last question, do you still get tongue ones sometimes or this passed?
 
couple here and there, since i envoked the no look rule, i may have felt 5 or 6. When i was checking things out, i would get that in an hour. Take care my friend, you will get thru this.
 
Bw2, You saved several with your posts on this thread. Thank you for taking the time.Take careRobynn :D) P.S. TD, you are good my friend, seriously, you are not alone with this.
 
TwitchyMD,I have nothing to add here, I don't think I have even had a tongue twitch. But I understand your fear, your concern. I am sorry for this, but I think you are OK, hang in there. RB
 
Well that is the problem, why not many people with BFS get them in the tongue? If this is one homogenous disorder, everyone should encounter these at some point during the course of their BFS.Many long timers never had them and that is why I am scared.
 
last thing i will post on this subject, cause it is too suggestive for most on here to read. i didn't make one thing clear in my earlier post about my neuro appoinment. The twitch would be a continuous wave throughout the whole tongue and tremendous damage would be evident at the point of fasciculations being evident and typically you would see that one side of the tongue would be damaged(atophyied) I didn't mean that the twitch would be on one side and constant. Again, i can't stress enough that he assured me that anyone with this happening that damage was occuring, they don't have to look too hard for evidence. I hope this helps and sorry if i stressed anyone.
 
Thank u BW you are a lifesaver:) I pray that someday I can accept my *beep* constant tongue twitch, I really do. No offense twitchy doc, and I am not trying to be a b@#$%!, but have u tried anxiety meds?? I mean you have been going on and on about this tongue thing, and quite frankly your posts scare the crap out of other tongue twitchers and newbies! There are lots of tongue twitchers on here, believe it or not............I have talked to many. Did you still not get that emg, maybe u should and you could put it to rest! Every nuero I have read about and seen (except yours apparently) has told me the same thing............twitching in and of itself is no reason for concern, and the tongue is not special, it is a muscle and can twitch just likt any other muscle. I just hate for newbies to come on and read your theories on how its rare outside of als, because that will scare the sh*t out of them (it did me) and it simply isnt true. All 3 nueros I saw said they have several patients with begnign tounge twitches ..........so u figure how many nueros are there in the US......millions......if they each had several begnign tongue twitchers.........well u can do the math! Anyways I understand that you get scared, hell we all do, but maybe try to keep your posts a little more gentle. Tongue twitching is out there.....and yes mine is constant while resting and so are a couple other peoples I have talked to! You are ok:) Ok sorry about spelling errors and such, hungry baby no time to proof read! p.s. I hope I didnt offend anyone!
 
I am a newbie and I have had tongue twitching. It hasn't been a hotspot for me yet though, but I have had them, this probably won't help much because so many have commented and you are still very upset about your tongue twitching, but I thought I would let you know that I am yet another one out there that does experience the twitching. It seems to me that this is just your hotspot at the moment. I feel for you. Anxiety is the killer. Try to relax, we are all here for you.Tanya
 

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