Thanks for all the info Annie. Do you have info on Dr. Barohn in Kansas. I could take a motorhome trip out to him I suppose, but as this progresses I suspect they're gonna decide I'm more normal than not.
There use to be a list of Neuro's that specialize in MG on the MGF website, but not anymore. Once I get rediagnosed, I'm still left with the question of who to see to treat me!
You take care and stay out of crises and away from those docs - ya hear!
Becky
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Originally Posted by AnnieB3
Thank you, everyone. It really helps to "talk" to other MGers again.
I know, Erin, MG is not that rare. CMS is but they're supposed to consider that when looking at MG. CMS (some of them, there are over 100 syndromes) is pretty much exactly like MG but has a genetic cause.
Any kind of caffeine will do what Mestinon does. I cannot believe doctors don't know this or don't tell us this! There are tons of articles on it.
Gdbyrd, Doctors can be pretty awful but they can be really great too. I've got some fabulous ones, thank goodness. I don't know why, but neurologists tend to be so arrogant and don't listen well.
Kristie, Who knows how much coffee effects an EMG. I just know that most sources say not to have it about 3 hours before an EMG.
Becky, Mayo is not necessarily the best place to go, especially if you don't have insurance coverage. It is very expensive to go there. Dr. Barohn (Kansas) is supposed to be incredible.
Thanks again. Since I've been doing this doctoring for ten years, I've kind of decided that the most important thing is to keep doctors/doctoring on the back burner and enjoy my life. I just hope I don't have another MG crisis 'cause the poor dears won't know what to do! |