Hi DeliaDee,

I don't know if this will help you, but neuromyotonia came to mind with me too when I read your post. It's something I have looked into too because I have a LOT of twitching (fasciculations) all over my body, with my calves getting most of them. Mine also are set off by exertion. Yoga (which I love) can set me off really badly, unfortunately. Once I made myself clean the whole house, which took me all day, and spent the next few hours lying in bed twitching (and feeling utterly exhausted). I also have cramps at times, and I don't dare stretch with my toes pointing or I'll get a terrible cramp in my calves.

I do get the internal shaking but it's not constant. It will last for a few weeks and then go away. At the same time I can also have tremors in my arms. I can confirm what Nicky told you though that people with neuromyotonia do report this internal shakiness (not that Nicky needs any confirming, she's one smart cookie).

I know how you feel about having symptoms which don't fit into the mg frame. Instead of thinking in terms of complex, multiple diseases I've had doctors just dismiss mg because I have these symptoms. I also have had mg dismissed because I have terrible fatigue and I have suffered from horrible cognitive difficulties in the past.

Anyway, this video might be helpful to you. It's a video of fasciculations in the calf of a patient with neuromyotonia.

http://www.neuromyotonia.co.uk/tests.html

I have a video of myself that looks *exactly* the same except that my fasciculations are coming faster. I'd be happy to send you the video if you think it would be helpful - just pm me an email address that I can send it to. I don't know if it would be helpful to you since I haven't been diagnosed with anything that would explain the twitches but again, I'd be happy to send it to you. The twitches have been described as looking like a worm crawling under the skin and that is definitely true in my case.

One way of diagnosing neuromyotonia is to test for voltage gated potassium channel antibodies. I have tested negative, but only 30-40% of people who have neuromyotonia have positive blood results.

I'm sorry, I can't tell you a whole lot more since I've gotten nowhere with getting an explanantion of all this. The local neuros give me a blank stare when I bring it up. I guess if they don't have accurate information on mg it's going to be hopeless that they would know about neuromyotonia. I am going to be seeing an mg super-specialist next month though, and I can get back to you about what he says if you think you have similar issues.

There is one good, informative site that you might want to look into:

http://www.pnhinfo.com/

Whether this addresses your issues or not, I wish you very good luck in getting some answers!

Ally