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Re: Tongue Twitching

PostPosted: December 8th, 2011, 5:55 am
by yasmin
Just curious- how far in did you guys get tongue twitching...? It seems a lot of people don;t have it to start but then it comes on after a while....?
Yasmin x

Re: Tongue Twitching

PostPosted: December 8th, 2011, 7:49 am
by TwitchyDoc
For me, it started after more than 3 years of bodywide fasciculations. Its much less frequent now..fortunately. If it was MND of any kind, it would not become better.

Re: Tongue Twitching

PostPosted: December 8th, 2011, 9:32 am
by Jujulia
For me it started after 8 months of bodywide fascics...

In A*S forums, some people say they were not noticing fasciculations before the tongue started to feel weak, or before they had problems swallowing, etc., but maybe it's just because they were not paying too much attention to it? how can we know for sure that their tongue was not twitching before getting weaker?

Re: Tongue Twitching

PostPosted: December 8th, 2011, 10:28 am
by bfshopeful
I have asked that same question before time and time again. The only answer I can ever come up with is that fasiculations come after muscle wasting starts. Since the tongue is all muscle with no fat or anything surrounding it the fasiculations would show even sooner then in the arm etc. So I would think that once the fasiculations started they would be able to see them quite clearly. The other thing is that we may just have tongue twitches, not true fasiculations in that area. I know that my twitches don't even show as fasiculations on an emg.

Re: Tongue Twitching

PostPosted: December 8th, 2011, 10:29 am
by bfshopeful
To answer the other question, my tongue was actually one of my first. Then it didn't happen again for like a year. I usually get it under extreme times of stress. It seems to put me in panic about once a year.

All I know is that medical literature is sometimes way behind the times. I know when I first had panic attacks at 14, I am 35 now, I could not find a doctor to even suggest panic attacks. I was diagnosed with asthma, menieres disease, high blood pressure, heart problems, etc. None of them were true. It was just anxiety. I have a feeling the tongue twitching thing is the same. I have had weird neuro sensations ever since I started with the anxiety. It is just the way my body handles stress I think. That doesn't mean that I won't freak with the next tongue twitch, because I will. It is just the way I am built.

Re: Tongue Twitching

PostPosted: December 8th, 2011, 9:51 pm
by johnnythejet
bfshopeful wrote:To answer the other question, my tongue was actually one of my first. Then it didn't happen again for like a year. I usually get it under extreme times of stress. It seems to put me in panic about once a year.

Forgetting about all the other reasons that clearly put you into the BFS category, this description by you tells it all. The disease you fear is not capable of playing these games. No way no how.

Re: Tongue Twitching

PostPosted: December 9th, 2011, 9:27 am
by TwitchyDoc
bfshopeful, well its quite common misunderstanding - if fasciculation is not recorded on EMG, it only means the needle tip was too far from the electric signal. It does not change the fact you have fasciculations if they can be seen or felt. Today echo (ultrasound) is used to detect fasciculations as it covers deeped and wider area.
It really does not matter, tongue fasciculations are not of greater concern unless you have other signs.

Re: Tongue Twitching

PostPosted: December 9th, 2011, 1:12 pm
by kovitch
hiii !

i have tongue twiches too. Mine started after focusing all my time on my tongue because that what the thing that I do not want to have since my first body twiches start. That was my biggest anxiety to develop tongue twitch.

Re: Tongue Twitching

PostPosted: December 9th, 2011, 4:30 pm
by bfshopeful
I think you have a stress element.

-----Original Message-----
From: j
Sent: Friday, December 09, 2011 12:14 PM
To: Verma, Ashok
Subject: RE: (I deleted your last name) Jeffrey

Dr. Verma,

I know that I am a mental mess and I am sorry for bothering you, but I do have a question before I go in to see you. I have noticed that my tongue twitching comes after I am stressed and I really tense my tongue. I have a habit of really pushing it hard on the roof of my mouth and below my bottom front teeth when I am stressed. I also noticed that now I can make it happen on the tip simply by doing these exercises. Is that normal, like when you tense your calf muscle up, or is the tongue different?

Jeff


First time my doctor has said tongue twitches can be caused by stress? I guess maybe 3 years later he is starting to beleive? I don't know, I am still freaked the hell out. Thank god it is the weekend and I can put myself in a zanax comma.

Re: Tongue Twitching

PostPosted: December 9th, 2011, 9:12 pm
by bfshopeful
Then he emails me again stating that "it is very unusual for normal people to notice tongue fasiculation". Did he just call me crazy? Or, is he saying that people with ALS are not normal? What a head game.

Re: Tongue Twitching

PostPosted: December 10th, 2011, 6:37 am
by chrissi
I would bet that a whole lot of people have tongue fascists, but that they are not detectet. I feel mine as some little electrical zapping feeling, but not very strong. So which "normal=not hyper anxious" individual would leave his comfortable seat, his work place or whatever or risk an accident just for a little tickling tongue. And even more..every person not aware of what a fasciculation is (=in relaxed muscle mostly) would stick out his tongue wide to check what is tickling there, which makes many fasciculations stop. You can see tongue fascists so easy because there's no fat in there, that means that people CHECKING their tongue have much more visual feedback than for other fasciculations. This is why people with BFS become so obsessed with their twitching tongues. As Twitchydoc mentioned, EMGs in healthy people are not really very helpful to get an idea of how much twitching their tongue is, as you have to be very close to the twitching fascist. So as long as there is no absolutely nuts control group that lets doctors make some kind of weird vodoopuppet lookin thing with their tongue , they will have no realiable data about how common tongue twitching is in healthy individuals. Pleeeease understand that these little zapping twitches we get are so completely different to the tongue twitches ALS sufferers get. I have seen videos of ALS tongues twitching...holy *beep*, NO, this is not what we have.....please let this get into your brain. If your doc still insists that tongue twitching is more sinister than other twitching, then please ask him why it seems to be OK for him to have regular twitching on the lips like many average people have (which are also bulbar nerve innervated muscled as far as I know ), and not in the tongue.

Re: Tongue Twitching

PostPosted: December 10th, 2011, 11:58 am
by bfshopeful
I think the lips are innervated elsewhere but I could be wrong. I am sure it's all bfs though. Anxiety just plays tricks on me. Like a little schizophrenic devil in my head.

Re: Tongue Twitching

PostPosted: December 10th, 2011, 12:11 pm
by bfshopeful
I'd love a link to that video in a PM if you don't mind.

Re: Tongue Twitching

PostPosted: December 10th, 2011, 8:19 pm
by cenkay.a
with every doctor i've been to about all this crap, when i mentioned tongue twitches they were NOT alarmed, they all pretty much said they don't consider tongue twitches to be any more of a concern to say a finger twitch, its still a part of your body, ive twitched in the craziest of places lol... and the tongue, they're all so fun.

Re: Tongue Twitching

PostPosted: December 11th, 2011, 10:27 pm
by bfshopeful
that's reassuring, maybe I need a regular nuero and not als specialist