Constant tongue twitch

[steffen]

Hi "Brummer",
my congratulations! I am curious if the EMG picked up fasciculations?
Best Regards
Steffen

[Craig]

Thought I'd chime in with the constant tongue twitch. My tongue has been twitching like crazy for the past couple of months as well. I have one area that just flickers nonstop and I can induce twitching there as well when it does decide to take a break...the other areas on my tongue just kind of come and go. It is without question the place I dread twitching the most. I had a similar episode back in 2003 and just pulled up my panicky email to my neurologist telling him how concerned I was - his reply back then was "I am not concerned about your tongue twitching and you should not worry either". I went back to see my same neuro a couple of months ago (10 years later) and showed him my tongue twitching. His comment was "at least you're consistent after all these years!" Craig

[Brummer]

Hi Steffen, yes he picked up the twiches with the EMG and he saw them too. During former visits I sometimes was not able to show him my hotspots. But now I was and he pulled the needle exacly in that place that twitches nonstop. I also have random twitches in my tongue just like Craig but what made me so afraid was that one spot where it´s twitching 24 hours a day without only one second pause for over a week now. My calves are also doing this. I am a very bad twitcher for so long now that I do not think it will ever stop again. But most of the time I´m fine with it. I can not wear short trousers for example because the fascics on my calves are so bad that people notice it and talk to me about it. Have you ever seen Jerrys Video on YouTube? My calves do the same. It´s really bad.

[steffen]

Excellent, then there is a documented case of benign tongue fasciculations by EMG
During the last EMG of my limbs they were not able to pick up fasics. And normally my calfs twitch non stop as well. I think I can calm down the twitching by being extremely nerveous...

[TwitchyDoc]

Bummer, could you please participate the BFS study (there is a link in the General discussion thread) - a documented tongue fasciculations would be an extremenly important for the researcher doctors. If you dont mind to scan it and e.g. mask your name. It would be very helpful!

[Brummer]

TwitchyDoc, I'll do so. Why is this the first documented case? I've read so many threads here about people with twitching tongues. Did no one of them ever had an emg on the tongue? Not even you or babjojo? Should I be worried about what my neuro said about the twitches? Perhaps he did something wrong or he didn't told me the truth because he knows i'm scared. I have not seen the report yet. He just talked about the result. I'm scared...

[anita]

Brummer,
i have tongue twitches too and I read about lots of other people on this site having them. I never had an EMG on my tongue but I know what a twitch is and my leg ones have been docummented. I don't know what they mean but I know I can eat and speak fine, and that's all there is to it. Don't panic!
Anita

[TwitchyDoc]

Brummer, that was not meant to scare you (I have had them too) - if you neurologist said it was fine, then it was. I have not had EMG on my tongue, neither Bobajojo. But it would capture them because we have had them. But in medical literature, there is not a single case of benign tongue fasciculations documented and that is why neurologist often say it is not benign (as you have seen with Pioro). The ALS experts doing this BFS study want to change this view and to do so they need an evidence. They have real patients but our data (with EMG) will be used as well. And a person witn tongue fasciculations actually recorded on EMG is something entirely new in and thus extremely helpful. Would you not feel better if you read an article saying that this has been observed and it is benign? This is a chance to help them produce an article like that.
Just fill in that questionnary (sorry for typos, I was translating that), scan your EMG/clinical note and send to the emails I mentioned.

[anita]

I find it sooo hard to cope with this topic
Anita

[mwagner]

I may be wrong, but I'm pretty sure there are many others on this board who have had their tongue EMG'd. I remember when my tongue first twitched and I did a search on here, and to my great relief found what seemed like hundreds and hundreds of posts. Being very obsessive over all of this, I practically read all of them, and knew that there were others on here that have had their neuro do an EMG on their tongue. And pretty much, like almost every other EMG result on this board, nothing was recorded of any concern, and from my guess, no one ended up with anything bad.

Of course, whether we could get any of them to participate in the study, I'm not sure. But for those of you who are worried, do the search like I did. You will find that you are far from alone, and that tongue twitching, while one of the weirdest twitches (I still hate it when I get them and never feel quite comfortable with them), it seems like they are one of the most common as well.

I'm glad twitchydoc is advising you to participate in the study with your results, which will hopefully change those old neurology texts that don't seem to understand our disorder at all.

[Brummer]

I´m back again. My neuro didn´t want to give me his EMG-results to post in here. I have no proof for the results he told me. I was very nervous about it and went to see another doctor. He looked at my tongue and said that he can not believe it is a fasciculation because it remains at the same place. He didn´t want to do an EMG. I have that constant twitch for months now and three days ago another one appeared. They both stay at their place. The first one is big and occurs several times a minute. Never stops. The second one is so fast that it looks like shaking my tongue. It shoots several times a second and for days now. This post goes to the tongue twitchers here. I have twitches all over my body but these on my tongue scares me so much. It seems to me that they will stay there forever and now it it progressing to other areas. I also have a hotspot on my forearm that I can´t feel but it makes the tip of my thumb move to the inside. This is going for 8 weeks now and it doesn´t stop either. I don´t know what to do now. This nightmare doesn´t stop and especially my tongue is getting worse. I´m afraid that this fast quivering is a fibrillation. Please let me know what you think about it. Sometimes I really don´t now how to move on with it. It makes my hole life stop.

[TwitchyDoc]

Brummer, I cannot understand how a doctor can afford to refuse to give you the EMG results, what country do you live in? He is obliged to do so absolutely and without any excuse! Just ask him again to provide you with the EMG results, e.g. for another neurologist to compare. He cannot refuse that because it would violate your patients rights.

Anyway, do you have a video of that twitch? I could get some specialist to check it but do not expect to say anything else than "interesting, does not look like ALS".
In ALS, fasciculations of tongue appear to be widespread, variable, rippling (twitch in the back, twitch in the front, on sides..). That is why the other doctor could not believe it is on one place. Anyway that is a good sign suggesting local involvement.

Have you tried Tegretol? Lyrica? Neurontin? Keppra? These all are reported to be helpful and for some people extremely helpful. For me, Tegretol worked. I do have tongue twitches, I could say daily a few of them, for nearly 3 years.

[Brummer]

Thanks for your reply. I am from Germany and I told my neuro that I want his report for your study. That was the mistake. He don´t want this to be published even if we don´t mention his name. I have a video of the twitch. Can I sent it to you via e-mail? It would be so great to hear the opinion of the specialist you know.

[TwitchyDoc]

Brummer, it is strange on its own that he does not want to have the results published and I would doubt an opinion of such a doctor. But again, he must provide you with a paper conluding his EMG findings and it is up to you what you do with it. I would definitely insist on getting the results because it is suspicious that he does not want you to have it (and illegal).

Anyway, if you PM me the video, I will happily show it to them and let you know.

[Brummer]

I have these hotspots on my tongue but also widespread twitches all over the tongue. No atrophy, weakness, etc. But all this happened within the last 3 month. I´m twitching for 8 years now and I am a very bad twitcher. But this never affected the tongue. So, I´m afraid that this is something different because it´s getting constantly worse. And there are so many different opinions about tongue twitches to be a very bad sign or not. I´ve read all posts about tongue twitches and this really made me scared.