Originally Posted by tysondouglass

Blonde-

I am also seronegative including Musk antibodies. I have been tested since Jan. 09, maybe 6 times and I still find myself negative. I have had several neuroloists (MG specialists) and they all agree I have MG through SFEMGs.

At first they tried mestinon for me, but it never did anything so i still to this day do not take it. I had my thymus out 2 months after diagnosis in september 09- after my surgery I got much weaker and there seemed like there was going to be no end to this weakness I experienced. I too had diaphram weakness, trouble swallowing, etc. I was on cellcept for 9 months, and have been on prednisone since november 09'. My dose of prendisone has been upwards of 80mg for the most part, though now tapering down and am on 40mg a day.

When I switched from Duke to Johns Hopkins for doctoring they switched me to Imuran and it seems to do be doing wonders. Though it is not at its full potential, yet.

By summer of '10 I was somewhat better..then went to college. (College + Immunosuppression doesnt work well). I was always sick due to living so close with everyone else, and I hope soon that can change because I miss going to school more than anything....

You need to find something that you can do to calm you down when the emotions start flowing...because even for myself (a guy who doesnt like showing emotion very much) it gets to be a little much...

It is very important to make sure you take care of yourself as you know. The heat is very dangerous to some people with MG, and taking naps frequently can help with this if you live somewhere hot. I lived in North Carolina when I was diagnosed but have been residing in Maine- Still usually have to take a nap everyday but the weakness is nowhere near what it was in North Carolina...

I do understand what you mean about the emotions going wild, and theres not much that helps that except for feeling the emotions and letting yourself know that they are acceptable for wht you are going through.

I am also on IVIG every month over 3 days. I hope to get rid of this as time goes on but right now my body doesnt want to because it has gotten used to how good it feels after.


Please feel free to contact me if you wanna, or need some questions answered. Although Im only 18 ive got quite the grasp on this disease..