Hi Tyson,

I'm in the same boat as you...I actually had no idea that you had a thymoma, and this could be why it's taking a while for you to get better. It also sorta explains why your symptoms got a bit worse after the surgery. For some reason that happens sometimes when there's a thymoma.

When I had my surgery, I also had to be re-hospitalized for an exacerbation. I met a nurse at the hospital who also had MG due to a thymoma. She had all the same symptoms (bulbar) as me, except she also had ptosis (I don't have this symptom).

Anyway, the year prior, she had her thymus/thymoma removed, and also had to be re-hospitalized two weeks after the surgery, just like us. Our neurologist (we have the same one) started her on Imuran, and one year later, yer symptoms were gone and she was working again.

So there IS hope. I know that things seem rough right now. I'm supposed to be starting Imuran too, but I'm a bit apprehensive. I came across a lady on this site who says that she knows someone who had resistant MG, also with bulbar symptoms, and Imuran helped her immensely. It isn't uncommon for MGers to take a strong immunosuppresant + prednisone + mestinon.

I know it sucks to take so many meds., but maybe you can ask the doc. about this. I also suspect that because you're young, kinda like me, although I'm older (26), your immune system might be 'stronger' than average, and this might be why it's taking a while for the prednisone to kick in. My neurologist actually said that my immune system is probably very strong, but maybe she was just trying to explain things to me in terms I'd understand.

The steroids didn't really start to work for a couple of months for me, and plus I had to take 80mgs. So you could always wait it out for a bit longer, but you could also bring up the possibility of taking another immunosuppresant in the future if things don't improve soon. I don't recommend taking a higher dose of steroids just because the side-effects are brutal, as you know. Adding another drug might be the best choice.

Good luck and sorry things aren't getting better faster. I know the frustration.

BTW, once something starts working well, you don't have to be on it forever. Your receptors might just need a good rest, some time to repair, as Juanita had said in another thread. When that happens, you could try getting off the pills and enjoy some healthy times without meds. That would be a truly happy day!

ttys!
Nicky