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Thanks, Celeste.
LRP4 has been around for some time now. It's always good to bring it up, though, because not even some doctors know about it.
There are over 100 genetic CMS mutations.
There is LEMS (and probably variants of that).
There are 3 antibodies for MG, and multiple presentations and manifestations of it.
And there are channelopathies, which are probably "cousins" of MG, too.
Have you ever looked at the NMJ?
http://retro.grinnell.edu/academic/b...culty/lindgren
Look at all of the possible places for attack by antibodies! You know they're going to discover even more!
There is no way that all of the seroneg Mgers don't have MG. That's such a ridiculous premise. Doctors rely too heavily on labs and tests and not enough on their eyes, ears, and brain.
I'm grateful that there are people out there still doing research. Now if they could only find a cure for these damn diseases!
Annie (AnnieB3)
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I brought this over from the LRP4 thread -- didn't want to be a "hi-jacker".
My baby sister has been having sporadic MG symptoms -- double vision, neck and upper arm weakness, shortness of breath, late in the day fatigue, and swallowing difficulties. After a scope and barium swallow failed to determine a cause for the most problematic, the swallowing, she sort of resigned herself to "live with it". I should mention that several years ago she had a negative MG bloodpanel. A few weeks ago she told me that a pill got stuck in her throat and she used her finger to dislodge it. At that point, she noticed that her gag reflex was GONE! I freaked -- because mine is gone and the only things I could think of that might cause it are MG, MS, or a stroke. She called her neuro and got an appointment THAT DAY! He suggested an MG panel saying that things could have changed. When we went for the results, her AChR antibodies were negative, but her striational antibodies were OFF THE CHART. Normal is <1:60 and hers were in the neighborhood of <1:3500!! She was immediately scheduled for a CT (thymoma), EMG, and RNC. All have come back negative. I asked the doc if this meant she didn't have MG. Uh, no! He says we will just have to wait and see -- possibly do an SFEMG in the near future. Immune suppressants are out of the question -- she has chronic staph. Prednisone is NOT her friend. Of course we are all keeping a very close eye on her. (My sister does have RA and three thyroid disorders which "could" explain "some" of the MG-like symptoms. So, we don't feel like she is being ignored or pooh-poohed by her doc.)
So my question for you, dear Annie -- and for anyone else who might have a clue. Do you know of any cause (other than MG) for extremely elevated striational antibodies? My sister is 45 -- does not take penicillamine for RA and has not had a bone marrow transplant (the only other reasons I have found in my exhaustive search).
Thanks much!! Sorry I've been MIA. LOTS of stuff going on in my life. Miss you all a lot!
(((HUGS)))
jana