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Re: Constant tongue twitch

PostPosted: May 6th, 2013, 9:35 am
by bobajojo
I just want to chime in here to make sure that others don't get anxious when reading. I feel twitches on my tongue everyday. I'll feel them on one side, then the other, then way in the back, then at the tip. This happens everyday and frequently throughout the day. There was a time when I was actually shining a small flashlight on my tongue and staring at it in the mirror. I could easily see the fascics appearing randomly on my tongue. One side, then the other, then way in the back, then at the tip. I've also had hotspots in one area of my tongue, but most of my tongue fascics appear randomly and all over. -Matt

Re: Constant tongue twitch

PostPosted: May 6th, 2013, 12:13 pm
by Brummer
Matt-I saw all your videos on youtube and I twitch the same way you do. All over, 24 hours a day, severals hotspots at the same time, sometimes lasting over months. From fine twitches that I can only see, to big ones moving limbs. But during my 8 year career of twitching I never had one single twitch of the tongue. And I do not understand why this is happening know. My twitches were strong from the beginning. They never stopped or calmed down but they also never get worse. I read about what your doctors at Mayo Clinic told you about tongue twitching and that calmed me down a bit. But I also read other opinions about it. I havenĀ“t found a doctor in Germany who was interested in BFS. Can you explain to me why some ALS specialists seem to be so sure about tongue twitching to be of more concern than twitches on the rest of the body?

Re: Constant tongue twitch

PostPosted: May 6th, 2013, 12:34 pm
by TwitchyDoc
Bummer, I checked your videos (I did not see anything on the other one, the light was too bright, overoexposing the tongue). I will ask for opinion but I can tell you but what you have there does not look like typical fasciculation, for that it is too fast and for fibrillation, it would not be that focal rather then spread over the tongue and continous in all places together. I think that Isaacs/ neuromyotonia could be really checked in this case, as this it is known to affect the tongue as well. Did EMG show any discharges? I do not remember what your EMG said about bulbar area (if it was done there).

As for your question why tongue fasciculations are often viewed as a malignant sign - nobody knows, I asked directly few specialists like prof. Eisen who has been investigating ALS for many decades. It is just association that when person comes with slurred speech and tongue fasciculations, it indicated the bulbar area involvement. Also the XII crania nerve which innervates tongue is well hidden, short and thus less prone to damage (as opposed to calves). But there is nothing special from medical point of view that would indicate that tongue fasciculation is more likely to be malignant. As I said, I have had them as well.

Re: Constant tongue twitch

PostPosted: May 6th, 2013, 1:41 pm
by Brummer
Never heared about isaacs syndrome. Is this something serious or is it going to disable me someday?

Re: Constant tongue twitch

PostPosted: May 6th, 2013, 1:55 pm
by TwitchyDoc
Isaac's syndrome = neuromyotonia. There is no long-term data available but except for cramps, stiffness and continous muscular activity (twitching, rippling of muscles) there are no known more serious issues. Acute forms can be very dangerous but that is something that begins one day and next day you cannot walk because of stiffness etc so definitely not your case.

But most importantly, I do not say you have it, just that it should be checked. Seek for specialist in neuromuscular disorders or disoderds of neuromuscular junction, usually these are specialized in e.g. myaestenia gravis. But ALS specialist should be very well aware of that as well.

Re: Constant tongue twitch

PostPosted: May 6th, 2013, 2:05 pm
by Brummer
TwitchyDoc-thank you so much for your help.

Re: Constant tongue twitch

PostPosted: May 20th, 2013, 12:39 pm
by Brummer
My tongue is quivering now all over while it is completely at rest. It looks exactly like the videos of ALS patients on youtube. I can not stop it and my neuro is on holidays. I am so scared. I don't know what to do now.

Re: Constant tongue twitch

PostPosted: May 20th, 2013, 12:46 pm
by TwitchyDoc
Brummer, I assume what you have is tongue tremor which is not fasciculation. I think I know what video you are referring to but keep in mind that was fibrillation and tremor caused by enlarged motor units on markedly atrophied tongue! It is very hard to relax the tongue, especially if you are anxious - you will see a lot of strange movements caused by breathing and itnvoluntary movements but I bet it is not fasciculation.
Do you have a neurologic ER? I mean, if you are really feeling that scared and anxious, you should maybe go there to calm down.
Docen

Re: Constant tongue twitch

PostPosted: May 20th, 2013, 2:01 pm
by Brummer
It is really at rest. The flickering In the video I sent to you has spread out during the last days. The hole tongue is shaking now like this.