I know I dont belong anywhere but just questions

[limegreenphysicist]

Hey all,

You guys know me and I know I dont have an ALS diagnosis but there are no forums for MNM believe me I've looked lol so I can quit bugging you folks. Being that I dont belong anywhere...CIDP folks dont want me, yall tolerate me lol.. just have some questions.

Now that I know I have denervation and all that jazz I'm paranoid that every little new twitch is a sign of involvement.

My abs are twitching now and the tip of my tongue is twitching every now and then.

Can anyone relate or am I just a goober?

My tongue twitched for a couple days back in March and then went away and its back again for the last 2 days. i stopped neurontin cold turkey because it was making me want to kill myself in creative ways..

Is my tongue involved now? or is it possible to have benign twitches even while your other parts are denervated?

Last question..I have denervation in 3 limbs but why do I not have significant atrophy or weakness. I had one episode of weakness 2 months ago the cookie incident but even my most denervated muscles are the same. Any thoughts?

I'm just kinda trying to plan ahead so it doesnt freak me out when whatever happens happens.

 

[Phil M]

Its ok! Friends are friends! Plus you purdy! lol! Have you checked out Lymenet? I think thats the name.

 

[limegreenphysicist]

I have but all they do is complain about fatigue dont have anything where near the problems I do lol..plus most of them have all normal emg/ncv and even though they think they are...are not living on the verge of degenerative circumstances..thanks for the purdy compliment I'm smiling

 

[rose]

Kelly,

Generally speaking, people with pathological tongue twitching, (fasciculations) cannot feel them, additionally, "worrisome" movement in the tongue is usually observed on the surface in the middle of the tongue not along the edge, or the tip. I do not know why this is.

I do know that I have felt my tongue twitch every so often, a day or two here or there, and, because of this can relate to people who find it unnerving (like the pun?) but, the fasciculations on the surface, middle of my tongue I do not feel, and have never felt. It does not have to be a harbinger of problems to come with this area of your body, and most likely is not.

Its possible one of the medications they have you on is contributing to this. When I was given a trial of Mestinon, it made my tongue twitch like crazy, and the surface of it looked like there were big (invisible) drops of rain pelting it all over.

As to why you cannot feel weakness, or see atrophy in the limbs which have the denervation, perhaps you had significant enough muscle bulk to take up the slack. Maybe someone else will have some insight about this.

Good luck, and hang in there!