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.