When I met my neuromuscular specialist, he was doing my SFemg which was positive. He talked about treatment options like mestinon, steroids, cellcept, thymectomy, IVIG and plasmapharesis. I knew from this forum that they were all the typical treatment option for MG. So I was very confident in making him my doctor for MG. Since then, all the treatment I received was mestinon, steroids (weaning off) and 1 IVIG treatment that went very badly.

At my last appointment, he said he would wean me off steroids for 1 more month then start a non-steroid immunosuppresant. I called him back after a month and he has no further treatment options for me, just mestinon.

Is wanting to try for remission unreasonable? He laughed at me when I asked about thymectomy. He said thymectomy is only for patients with tumours, although the recent literature says differently. He mentioned something about treating patients of all ages equally. I am only 54, I still want to try for remission, I want my life back or at least try to get it back, before I settle for my small world.

I am going to a new neuro as well as submitting the paperwork for John Hopkins, but again, I have to wait 3 months. Will I get the same treatment at John Hopkins? Is Dr Drachman more aggresive in treating MG? Please let me know if you have been to him.
Thanks,
kathie