Thanks, Annie. What I'm trying to avoid is stirring everything up, getting lots of advice, not following it, and then, after a while, stirring everything up again and making people give me the same advice. But I do think we're getting somewhere--I mean that every go-round we add something new. The paradigm for this process is a helix (the shape of a spring). We're not going around in circles--we're spiraling up. Yay for helices!

I am going to bring all this up to my neuro on Monday. I also need to talk to him about my mother's sister, who has, whaddayaknow, sudden weird balance issues and double vision but it wasn't a stroke. They tested her twice for MG (negative). So if there's a blood test for CMS, I'd like to hear about it, though I think what my neuro will do is send me to Mayo. He's offered before. I also want to talk to the doctor in Boston who did the SFEMG that diagnosed me. I want to ask him if my test is consistent with CMS and if it's consistent with HypoKPP.

I'm also going to try eating low-carb, small meals every three hours, because my spells seem to come either after not eating for five hours, or after getting very hungry and then eating. This is the HypoKPP idea. But HypoKPP is caused by a dominant mutation. My parents are unaffected. It's possible that one has a mild case, which expressed itself more severely in me--but my seven siblings are also unaffected, and so are my 35 nieces and nephews on that side (though one little boy seems to have ptosis in some photos--haven't dared to ask my sister-in-law about that!). AND I have seven kids, the youngest of whom is 9. You'd think that this would have shown up in someone besides me by now, if it were a dominant gene. Same thing goes for the CMS idea. With such a large family, we're in a better position than most to trace the genetics.

Thank you, all you lovely people, for being interested, and caring. I will keep you updated, and please, please tell me if you have any new ideas.

Abby