Annie, I have to apologize. It looks like we've been through this already. http://neurotalk.psychcentral.com/thread150297.html
I forgot about it. Found it again while googling. I have to move on this and stop going around in circles. I shouldn't keep bringing it up, putting everyone through advising me, and then forgetting about it for a while--and then starting all over again. Sheesh.

Abby

I think that is fine. It doesn't hurt to take a fresh look at this crazy disease.
Mike

I thought that it was an interesting discussion. Besides, with all the memory issues I have had, who knows whether we discussed it?

Well, no, Abby, you don't need to apologize. Maybe you have "guilt disease."

Your situation has been bugging you for a long time. You have the right to know what "the" answer(s) is.

The best way to solve any problem is through this kind of tossing out of ideas. Doctors aren't always comfortable with creative thinking - they're more left-brained. And they're often not comfortable in the land of "I don't have a clue." No offense to our dear Veterinarian! You have major doctor savvy. The majority of doctors I've seen simply aren't that great at creative problem solving.

I don't see this as repeating information but zeroing in on better connections of information. There's no ego involved. Only the truth matters. And until you feel comfortable with a truth, bug away!

You might simply have MG that is not as classic as what others have. Until I found the antibody test that had been hidden from me for nearly 7 years, I wasn't completely satisfied with the VERY obvious evidence that I had MG. CMS is still in the mix for me, in addition to MG, and since some not very nice doctors won't do the simple blood tests for CMS, I'll still be sort of vexed. The treatments really wouldn't be much different in my case, however, if I have a CMS in addition to MG.

If this gets to annoying, just tell me to bugger off. I think I'm done for now, though. It's up to your docs and you at this point.


Annie

Abby this sorta reminds me of my family DNA test. When I applied our Admin asked me who my immigrant was. It was a choice of 2 men and had been an on going debate for over 25 years. I told her I didn't care I just wanted the truth. Well when my results returned it turned our family history upside down. But heck I just wanted the truth and finally got it.

Annie what is the simple blood test for CMS? Does it go to Mayo?
Thanks
Mike

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

Has your aunt been checked for normal pressure hydrocephalous (NPH)?

Wow, it's so amazing you bring that up! My grandmother (mother and aunt's mother) had Alzheimer's. My mother (age 69) has been having some weird symptoms of mild dementia, but doesn't have a diagnosis of Alzheimer's. She has speculated that my grandmother didn't have Alzheimer's at all, but NPH, especially since she had a shuffling gait. NPH is evidently hereditary. I'm going to write to my mother and aunt right away.

Abby

Abby, If your Mom and Aunt have not been tested for a B12 deficiency, get them tested pronto! And don't take a low reading - even in the normal range - as normal. A B12 deficiency begins even at higher levels. Pernicious anemia is also a thought. Homocysteine (mine was high during my def.) and methylmalonic acid can be elevated during a B12 deficiency and that alone can cause neurological symptoms.

Mike, There are actually many blood tests for the genetic mutations of a CMS. Since Mayo was the leader in this area to begin with, they have the means to test for it more easily. Not many labs have the money to afford such specialized testing. Your neuro would have to call to see if they would just run some blood tests or if they would want to see you - AND your sister at the same time.

Annie

Thanks Annie I'll discuss this with my doctor (wife)
Mike