Originally Posted by AnnieB3

Hi. I used to be on Brain Talk a long time ago. I am now trying this forum out because I could use some support.

I found out in Jun 2006 that I've had fatigable ptosis my entire life. Quite a shock. I had been diagnosed with MG in 2001 but then thought I might have Congenital Myasthenic Syndrome (which has a genetic cause, not an autoimmune one).

I found out about a month ago that one of my MG antibody tests was positive in 2002. It had not been given to me or told to me by the doctor! It was buried in his notes only, which I had not read.

So now I don't know if I have CMS or MG or both (which is possible). It's a long complicated mess of a story that I won't bother you with. I'll probably never be able to have the CMS tests done since only two places in the U.S. do them and let's just say one of them has not been very nice!

I'm having to do more tests again and may have to go off of my Mestinon and Advair at some point, for a LONG period of time, if I want accurate results. I'm not sure it's worth it or even if I can do it.

Anyway, it's all pretty frustrating.

Annie

If I ever give you guys any "advice" or ideas, please understand that I am not a medical professional. I have been through more medical crap than the average person, as has my family, so I am more well-read then most people that's all.

Originally Posted by AnnieB3

Thank you, Redtail & Erin. I think the hardest part now is not knowing what treatments I can have other than Mestinon. I've maxed that out.

I do have a cup of coffee every day, so that helps. In case you didn't know, caffeine is a cholinesterase inhibitor just like Mestinon is! I found that out last year after I quit having any chocolate and got weaker. It increases both dopamine and acetylcholine. That's one thing the docs don't tell you! And you shouldn't have caffeine (or nightshades because they do the same thing) before an EMG!

I'm just sick of doing testing, you know? Sick of doctoring in general. I can't believe that not one person, like eye doctors, could figure out that I had fatigable ptosis growing up. I guess that lazy eye they "diagnosed" when I was 10 was just ptosis. It's so obvious in my K-12 photos it isn't even funny.

Anyway, I appreciate the support. It's really hard to deal with MG (or CMS) on your own.

Annie

Originally Posted by AnnieB3

Thank you, Redtail & Erin. I think the hardest part now is not knowing what treatments I can have other than Mestinon. I've maxed that out.

I do have a cup of coffee every day, so that helps. In case you didn't know, caffeine is a cholinesterase inhibitor just like Mestinon is! I found that out last year after I quit having any chocolate and got weaker. It increases both dopamine and acetylcholine. That's one thing the docs don't tell you! And you shouldn't have caffeine (or nightshades because they do the same thing) before an EMG!

I'm just sick of doing testing, you know? Sick of doctoring in general. I can't believe that not one person, like eye doctors, could figure out that I had fatigable ptosis growing up. I guess that lazy eye they "diagnosed" when I was 10 was just ptosis. It's so obvious in my K-12 photos it isn't even funny.

Anyway, I appreciate the support. It's really hard to deal with MG (or CMS) on your own.

Annie

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!