Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

 
 
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Old 05-31-2012, 08:24 PM #3
Stellatum Stellatum is offline
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Join Date: Feb 2010
Posts: 1,215
15 yr Member
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
15 yr Member
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Quote:
Originally Posted by AnnieB3 View Post
Abby, Have you had an EEG? Could you be having episodes of epilepsy or something similar to that? Like a variant of narcolepsy?

It's worth another phone call to your neuro.

Annie
Hmm...I really don't think so, but I'll look into it. I've read about cataplexy. I'm so confused right now. I finally realized that I'm having episodes, and I decided I'm having two distinct sets of symptoms: episodes and general steady weakness. But just this evening it occurred to me that what I was thinking of as steady weakness could be just a more mild episode. Myasthenia waxes and wanes. I just seem to have faster cycles of it, and the intense ones stand out. This description reminds me of HKPP, which can present as brief episodes or long "abortive attacks," or a combination of the two.

I don't think I have two different things going on. It all started together, and it gets better and worse together. There is some "background weakness" that I feel in my arms and neck--I mean steady all day and worse in the evening. But when I have an episode of weakness, it's the same weakness as the all-day weakness--same locations, same feeling--just more intense.

I had temporal lobe seizures (no loss of consciousness) in my early twenties. They went away, and I didn't know what they were (because those were the pre-internet days!) until years later when my son, at the same age, got them. We put him through the wringer with EEGs and MRIs and never did find a cause. He hasn't had one for over a year now. When I had them, I just assumed it was a mental illness, even though I was a philosophy grad student at the time, studying (among other things) the relationship between the mind and the brain.

Abby
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