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Blizna

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Hi all,
I have not posted in a while. I did notice some people here mentioned tongue twitching and you all are tired with explaining..but I would so appreciate your answers as after nearly 3,5 years, my tongue starts to doing that.
Few times per day, I feel twitch there. Its like electric shock and I can see it if I look at the tongue (if I am fast enough and the mirror is near). Its like part of tongue (on the side) jumps.
I read that most of you do not feel tongue fasciculations. But I am not sure whether its rule or not.
Thank you very much in advance!
 
You've been here long enough to know how to use search or look at bottom of this page.

AL.
 
Al, I know and believe me I did use search. I noticed many of pals have written it is not felt, but some described tingling feeling, pulling..
I would just like to know whether anyone felt it the same way, like electric shock, sporadic twitches.
I am very sorry to post it and I really thought I am okay after these years, but this is new and I am so scared.
 
Youve been dealing with all this for 3 years and still think you have ALS?
 
Yeah, unfortunately. I was entirely ok last year but now the tongue twitches and tongue changes: when I flex the tongue muscles, I mean really flex to make it pointy, it deviates to the side a bit where I have deep teeth marks.
After 3,5 years. I am sure I did not have the deep teeth marks there and mainly, I think they would disappear when flexing the tongue. But they are still there. When I stick out without flexing, its symmetric and looks ok.
But the tongue twitch, this eletricity-like feeling gives me immeaditely anxiety and I cannot get rid of it :(
 
I talked about this on an earlier thread. .. I CANNOT feel tongue fascis, which are in the center of my tongue. They are slight, it almost looks like the top of my tongue is jiggling like gelatin that is not set up yet. They do not stop, they're always there.

In the past, when my neurologist had me try Mestinon, it increased this activity to where it looked like raindrops were falling on my tongue; little pulls all over its surface, and I could feel it. It was definitely a side effect of the medication, and when I went off of it, this type stopped, never to return.


Along the side I have had a twitch where it pulls, and can be seen as well as felt. This comes and goes, it is not constant, and, according to my neurologist is not the same as fasciculations. Yes, the twitching is nerve related (obviously) but is not recognised as a hallmark of MND.


So, this leads me to think that different types of nerve irritation cause different types of twitching activity, and hence, that side twitches, and ones that can be felt, are not the type to be concerned about in relation to having a MND.
 
Rose, thank you for your answer, I did read your previous ones. But I am now kinda scared as I am getting the ones you describe to have from time to time, the pulling that can be felt..:(
 
Blizna,

I don't think that the electric shocks you feel in your tongue sound like ALS. I think you are right that anxiety feeds the need to keep checking these things. Have you tried counseling to help with these feelings? Are there any relaxation tapes or CD's available where you are? You may find them very helpful during those times when you are most fearful.

Lorna
 
Blizna,

The point I was making was that my neurologist has observed, first hand, my twitches that can be felt and seen, and she has stated specifically to me, that they are not associated with MND! And, she pointed to the middle of my tongue, and said to me that those were fasciculations.

I did not start out with side twitches, and then later on develop the ones in the center, its not like there is a beginning stage and they morph into something else. They are not the same.

And, its NOT just twitching or fascis that indicate there are problems. I can't stick my tongue out AT ALL. I can't touch the tip of my tongue to the roof of my mouth and open my mouth, because it is too short now. etc. My tongue is weak and cannot move well.

Lorna gave you excellent advise. And, you've got to know from your past experience that the more time you spend examining yourself, the more you will experience heightened anxiety, and hence, more extreme manifestations.
 
If after 3.5 years you think you have ALS you don't. You would have known way before now.
 
In the past, when my neurologist had me try Mestinon, it increased this activity to where it looked like raindrops were falling on my tongue; little pulls all over its surface, and I could feel it. It was definitely a side effect of the medication, and when I went off of it, this type stopped, never to return.

This is exactly what I get, usually in a very specific part of my tongue. It pulls, I can feel it, and I can see it. I could even post a video if you would like, but I'm not really sure what that would do.

Bilz, I'm also like you in many ways. I've been dealing with this stuff for over three years, the increase of tongue twitching is pretty new, I have large scalloping/teeth marks on the side of my tongue, and it sticks off more to one side when I stick it out. And I don't have ALS.
 
I wonder what exactly causes this pulling and twitching bc mine does it too. I have what I call myoclonus of the tongue too where out of no where it will jerk. So wierd and I do not have ALS either. It stopped it June and started again in September and now has gone away again. I guess we are freaks of nature. I do have speech problems though but it is more do to my jaws and not my tongue.
 
I think what needs to be focused on, (and I'm really so finished talking about this subject!) is that benign type of twitches, regardless of their cause, do not turn into the type of fasciculations indicating mnd. Its not like a mole which changes in appearance and become malignant.

Andy, & Kelly, other than certain nerves are being excited or irritated, I can come up with no other reasons. When I took the Mestinon, it was a really wild experience feeling what it did to my tongue, and how it looked, but I don't understand well enough as to how that medication interacts, to know if its significant that it caused this as a side effect. It (the drug) did nothing at all to help me, that's for sure.
 
I have to say that after 3 1/2 years of bulbar symptoms and having no tongue movement at all I have never had tongue twitches. I did have the "bag of worms" thing with my tongue but never a twitch.
 
Thank you all for your answers. Especially from you, PALS, my heart really goes for you..When I came here 3,5 years ago, I so adored you are helping others with your DX..and I still do. Thank you all
 
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