From Italy with BFS Worries

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justinullaby

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Hi everybody,i'm writing from Italy, i hope i won't make too many english mistakes!!!i suffer of fasciculations from january 2009, with all the other problem of BFS...i made 2 EMG at 4 arts, the first on april 09: clean.....the second one in augost 09: clean.......Now, i'm really scared since from a couple of months my tongue started twitching...even before this period tongue twitched sometimes, but not so often and strongly as now......i feel like it is stressed,burning and there are red point on my taste bud......i know there are cases of benign tongue twich but, since in Italy there's only a forum about BFS with about 100 persons you can image that tongue twitcher are just 3 or 4.....i pls you to give me more informations as possible about tongue twitches...your doc's suggest... is it possible that after one year of "regular" fasciculations my situation is evolving in something evil!??!Thanks a lot for your help and sorry for my mistakes!!!!!Alessio
 
Welcome,There are lots of tongue twitchers here. My twitching started in July 08 and the tongue twitch was there from the beginning along with twitches bodywide. I am no worse off today and maybe a bit better. I still do not have a clear explanation of the tongue twitch but I do know it is much more common than many neuros realize in people without horrible illnesses. If you click on my member name and search my posts for "tongue" you will find lots of reassuring info. Let me know if you cannot find it. By the way, do not worry about your English. It is very clear. I wish I were bilingual.Krackersones
 
Hi Alessio,I am too a tongue twitcher, and as Jro mentioned there are many of us here.My tongue (and facial muscles) are my main symptom. They twitch every day and it's been two and a half years now.The fact that your tongue twitches means nothing and I suggest not to dwell in it so much since it could get worse (the twitching I mean).After 2 clean EMG's and zero progression (additional twitches do not mean progression, nor do cramps) = you are more than fine. Let it go.
 
Dear all,thanks a lot for your support.....i'm really scared since it is getting worse day by day......i know that with bulbar Als my situation would have to get worse faster then it is now.....Is it true that in case of tongue fasciculations, i already would have speech problem!?!? what do your doctors say about this!??!Thanks a lot again!!!Ciao ciao!!!Alessio
 
I know the temptation to look for a rule that will give you total reassurance. Any answer anyone gives you is not going to be an absolute. There are no absolutes with this stuff or much in life for that matter. Get your reassurance from the fact that there are tongue twitchers (I have corresponded with one who has had it for over 13 years and is still fine) who are just that and no more and that every day that goes by that you do not progress you are more likely not to. If there is a scientific study out there on tongue twitching and progression to worse things, please let me know. But I have been researching this stuff and talking to neuros for almost two years and have not heard of it. So any answers on this topic are just based on rough guesses from general experience.
 
Stick your tongue out. If it don't deviate to right or left (if it stays centralized), it is not weak. A weak tongue always deviate to the weaker side when sticked out. Another thing: to check for fasciculations in your tongue it must be resting inside your mouth. If you stick it out it will quiver and that quiver is voluntary contractions and not fasciculations.
 
my twitching started in the tongue and right hand. tongue still twitches from time to time but i don´t care about it any more.... the tongue , like any other voluntary muscle, can twitch and it is very scary in the beginning but once i realised that it is just like any other twitch i stopped worrying
 
I've seen my left thigh twitch lots of times and this occurred before three clean EMGS. I had a muscle biopsy of that muscle days later and it showed denervation. That same muscle twitches less today over a year and a half later and is stronger than before. I do not mean to scare people but this stuff is complicated. I think something is effecting many of our nerves but is not ALS because ALS is something that almost always progresses to disability shortly after twitching starts. Our nerves could be slightly damaged/irritated but able to repair themselves to the point that we just get some twitching but nothing more. This is just my theory.
 
I want to thank you all for reassuring me....my tongue fasciculations are now intermittently....i had it for some months then stopped for a couple of week...and today they started again....anyway i'm reasonably secure that evil fasciculation are strong and continuos......while mine are not!!I have one more question....on february my father felt really bad and had to go to hospital....surprise: wih the EMG they found he is probably affected by Charcot Marie Tooth (CMT) ...fortunately the asymptomatic one ( CMT1 if i'm not wrong)...........we are only waiting for the genetic survey, but doctors are pretty sure about it.....At the light of this i've to go with my father to the Neuro once received the result.........do you think that my 2009 August clean EMG is enough reassuring that i don't have CMT too?!?!!?thanks a lot again for your precious support!!!Hugs from Italy!!!Alessio
 
I have a doctor's appointment today and I am going to ask about getting genetic testing for CMT. I do not know much about it except that it can cause some of the symptoms described here and that it can be very mild which is why people often do not know it runs in their family. For me, I would be thrilled to know I had it because at least I would know what I did not have and to me a mild case of CMT is hopeful. If I learn more I will share. Does your father have any twitching?
 
Dear,unfortunately a CMT diagnosis is not a beautiful perspective....moreover if i'm not wrong you suffer of tongue fascic. from a long time...so that ALS wouldn't be a fear for you anymore...right?......CMT can be very evil in some cases..........about my father...although i'm telling him about my fascic. from a here now....he never cared about "strange moviments of muscles"....he told me he has these "moviments" from 30 years but he never cared about it....my father is 130 kg for 190 cm of power and strenght, "why sould i be worried?!?!" he told me!!!.........anyway his EMG showed spread fascic. and a pronounced slowdown of nerves conduction...... what about your tongue fasciculations!?!?! are them still present!?!?!?Thanks a lot for your help and keep me posted!!!Ciao ciao!!!
 
inneundo,I do still have tongue twitching. I get it at least three to five times a day. Each episode lasts 10 to 15 seconds and sometimes one second. This has been going on in the same way for 23 months. I have no weakness or speech problems. I am a teacher and speak for 8 hours a day. I teach middle school so if I had a speech problem someone would have told me. I totally understand that CMT can be a bad condition. My point is that it is not always bad. I assume a lot of people have it but don't know it because they are not bad enough to get tested. I have no history in my family but will try to ask for the test.Krackersones
 

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