Page 1 of 3

Constant tongue twitch

PostPosted: February 18th, 2013, 12:51 am
by Brummer
Hi everybody, I need your help because I´m freaking out because of my fear. I´m twitching for several years now and from time to time I check my body to convince me that nothing changes (atrophy, etc). I also checked my tongue and I have a constant small twitch there that never stops. It is now going for over a week. Every second like a clock. But the most worst thing about it is, that I don´t feel it. I can just see it. That´s freaking me out. My calves also twitch 24 hours a day, on several spots at once, but never the same spot twice. It is random and I can feel it. Now I´m really scared about that constant twitching spot in my tongue that I can´t feel. Did anyone of you experienced the same?

If I would go to a doctor to let him do an EMG. Is the tongue one muscle or does it consists of several muscles? Is it then necessary that he hits exactly that spot?

Sorry for my bad english. I´m from Germany.

Thanks.

Re: Constant tongue twitch

PostPosted: February 18th, 2013, 1:59 am
by TwitchyDoc
Tongue consists of several muscles but are innervated through just one nerve which is n. hypoglossus, also the EMG would pick up an issue.

I'm a tongue twitcher too and sorry for my question - are you sure it is not a heart beat? At some places on the tongue surface the heart action can be seen. The more stable twitch, the better - suggest that just one branch is irritated. If you have a video, feel free to post.
Docen

Re: Constant tongue twitch

PostPosted: February 18th, 2013, 3:30 am
by Brummer
I am sure it is a twitch. I compared it while checking my pulse too. Do you feel your twitches? I´m scared because I don´t and I read that ALS patients don´t feel their twitches.

Re: Constant tongue twitch

PostPosted: February 18th, 2013, 5:27 am
by TwitchyDoc
Some I can feel, some I cannot. For me it is fast flickering of a one small part. Are you sure it is not musle being strained? Is your tongue entirely at rest? Many people cannot do that.

Re: Constant tongue twitch

PostPosted: February 18th, 2013, 5:42 am
by jerry2
TwitchyDoc, is the hypoglossal nerve also controlling the neck muscles as I have twitching at the side of a neck often. To prepare myself if I become a tongue twitcher also ;-&

Re: Constant tongue twitch

PostPosted: February 18th, 2013, 7:13 am
by bobajojo
I just want to mention though that I have constant tongue twitching. They are little flicks and very visible if seen in the mirror. I can easily catch them. They are not in the same spot, they vary and they are not stable... BUT they are still BFS. -Matt

Re: Constant tongue twitch

PostPosted: February 18th, 2013, 7:59 am
by steffen
Hi "Brummer",
I am from Germany, too. And I have been twitching for 15 month now. By moving the tongue around I can induce a series of twitches at the left tip of the tongue (real fasciculations). Small flickers I do not feel, but mostly the whole side of the tip moves and then there is a pulling/tense feeling. I don't think that it makes sense to differentiate between twitches that can't be felt and others. Fasciculations are the same in benign and not benign conditions. Given your history of several years of twitching I think you can't have ALS. I would feel much better if I had that history.
Kind Regards
Steffen

Re: Constant tongue twitch

PostPosted: February 18th, 2013, 9:48 am
by mommylondon
I myself have had just about every kind of tongue twitch u can have..they dont even faze me anymore...I've had this crap for going on 4 yrs now...just another muscle..just another twitch 8)

Re: Constant tongue twitch

PostPosted: February 18th, 2013, 12:52 pm
by Brummer
I just read an article of a doctor who said, that tongue twitches are not that benign than twitches in other muscles and he never met someone with benign ones. They always hat some serious things going on. Things like this always scares me. I know that searching the internet is the worst thing I can do. But reading your experiences helps a lot. It is very frustrating that even after all theses years of twitching I´m still having new symptoms and they always make my life stop and I´m going through this hell of fearing ALS. That´s not fair!!!

Re: Constant tongue twitch

PostPosted: February 18th, 2013, 1:54 pm
by TwitchyDoc
Brummer, was not that Dr.Pioro, that ALS specialist? I too read that but it means nothing..it is his opinion.

Re: Constant tongue twitch

PostPosted: February 19th, 2013, 12:56 am
by Brummer
Yes, it was an article of Dr. Pioro. I made an appointment with my neuro for today. He was head of a neuro clinic and he told me several times before that he has seen about 500 hundred ALS patients. I never asked him about tongue twitches because I never had some before. But I will do this today and post his reply asap. He will make an EMG of my tongue and this will be the best way to rule out ALS.

Re: Constant tongue twitch

PostPosted: February 19th, 2013, 9:57 am
by Brummer
So... After consultation of my neuro... He said that the tongue has to be seen as a muscle just like any other of the body. There is no difference between a twitch in finger or in tongue. He looked at the twitch which is very noticable and said that it is nothing serious. He also did a very careful EMG of my tongue and it was totally clean. He said 100% sure that there is nothing at all. No ALS and no other muscle or nerve disease. He also said that he would never say "100% sure" if there would be any possibility that something like this will progress into something serious. Because the time someone notices the first twitch the disease would be in progress and the EMG would detect it. Even if a doctor will not always be sure what kind of disease in the early beginning, he would definitely see that there is something going on.

Re: Constant tongue twitch

PostPosted: February 19th, 2013, 11:42 am
by jerry2
That's a good report. And one doctor more who will never tell anybody that he has never seen tongue twitching is benign ;-) I guess what doctors mean is that the probability of something serious when tongue twitches is higher. But you know probability sucks. Here is Matt, you and others who prove that there is also benign tongue twitching if there are no other symptoms like tongue weakness and atrophy.

Re: Constant tongue twitch

PostPosted: February 19th, 2013, 11:48 am
by bobajojo
Just one more thing to add since someone brought up Dr. Prioro. If you google tongue twitching, you will probably come across this doctor's assistant who stated that Dr. Prioro has never seen a benign tongue fasciculation. HOWEVER, in the very next line, he says that every patient Dr. Prioro has see with tongue fasciculations ALSO has problems with talking, swallowing, chewing, etc. So therefore, Dr. Prioro has never seen any of the thousands of BFS patients with BFS and tongue twitching and is in no position to say that there is no such thing (nor did he say that). So, its not that Dr. Prioro is saying that every tongue fasciculation is bad, he's just never seen someone like me or anyone else who has BFS with them. And there are LOTS of us. Just pointing that out. -Matt

Re: Constant tongue twitch

PostPosted: February 19th, 2013, 11:57 am
by jerry2
Ah, this doctor only sees ALS patients, the people who come to him are allready "filtered" by other doctors. That makes sense.