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Myokymia: Rolling twitches? Similar symptoms? Anyone?

PostPosted: July 21st, 2003, 2:01 am
by twitchaholic
Hi to all the wave-like twitchers-----those who have large highly visible twitches or rolling twitches like I do. Let me say I have not had my second EMG yet and I know nothing about my first one which was labeled "normal." I say this because at this point I don't have a name for the kind of twitches I have, but in doing a tiny bit of research I think I may have myokymia.
To remind you, I am freaked about the CONSTANT rolling twitches in my right calf and the occasional quick thumping twitches I get everywhere else. My calves look like they are having a party and didn't invite me, especially the right calf. I can induce a "charlie horse" or cramp any time by standing on my tiptoes. Sometimes my right calf will cramp at night. I feel "electric" at times with jolt-like feelings through my whole body. Aside from the calves, I get fairly strong twitches in my shoulder, butt, back, and that fat part of your thumb next to your palm but these are more sporadic.
In some post I cannot find right now I think Kerri mentioned myokymia. I have found an article that is pretty easy to read and describes it quite well (url below).

I would like to know if anyone has similar twitches (same type). I would love to hear from you.

I would also like to know if anyone has been told they have myokymia.

Finally, if you read the article, please let me know what you think.

In the meantime, here is the url to the article I think might help some of you:

PostPosted: July 21st, 2003, 2:41 am
by dwl
I have been told that I have myokymia rather than fasciculations. There is much less of a link between myokymia & als, so I think it is probably better to have myokymia! But remember - diagnosed (by a neuro/emg) benign fasciculations/myokymia have NO link with als.


PostPosted: July 21st, 2003, 2:44 am
by twitchaholic
Out of interest, could you describe your myokymia? I would so appreciate it.

PostPosted: July 21st, 2003, 4:41 am
by dwl
It's like quite a sustained twitch, often lasting for 2-3 seconds. The muscle sometimes feels like it's tugging on something. Does this help?



PostPosted: July 23rd, 2003, 8:57 am
by Renae
I'm confused. I guess its hard to describe the twitches exactly...I feel like mine are sometimes "rolling" and last a few seconds. But, I very rarely visibly see my twitches. Maybe I just don't pay too much attention anymore because I've been twitching for a year now. I just hit the one year mark last week and still twitch occasionally (much less, though). I also have a variety of other strange symptoms, though, that cause me worry! I think from the beginning, though, I was always afraid to look where I was twitching because I didn't want to see my muscles moving under my skin. It's very unsettling, but I have caught it a few times...mostly in my hands. Anyway, its interesting the difference between fasciculations and the other. ????

Renae :)