Hey guys,

Alice had brought up something interesting in another thread re. anti-ryanodine antibodies...

Apparently, these antibodies are present in older folks with MG and about 50%of people with thymoma (whether old or young).

Another antibody that's present in older folks with MG and the thymoma people is anti-titin antibodies. These usually affect breathing muscles.

It's funny 'cause after I was diagnosed with MG, but before I found out about the thymoma (and I was still questioning my dx since I didn't have ocular sx and all that), I remember reading case studies and relating very much to the symptoms that the older folks experienced (one man had tongue atrophy).

So I'm just wondering if anyone has ever been tested for these antibodies and if they had them? I'm wondering if I should ask my neuro. about this because the treatments are different. I don't know if it's worth it to spend 6-months to a year on a drug that might not be strong enough to deal with these resistant antibodies if I have them.

I'm feeling like maybe I should just go straight to the really strong drug that actually works to combat them (like tacromilus/cyclosporine) even though the side-effects seem deadly (literally). I even wonder about chemotherapy. I joined a site on Facebook for thymoma people. The people who had to have chemo. and who also had MG were able to get rid of their MG for the most part.

I wonder if they had the 'regular' MG, and maybe the chemo. didn't necessarily affect their outcome, but rather the passing of time, and/or removing the thymoma/thymus did, or if the chemo. got rid of it even though they may have also had a 'resistant' sort of MG.

Has anyone heard of chemo. being effective for MG? I feel like it might be worth it to go through the torture for a little while in order to have a better life later.

P.S. Wanted to mention again how much I detest this disease.

Nicky