Sadly Alison- I know this all too well. My doctors never warned me that i could become worse better than I had become better. I wonder if they ever said that to you guys.

Im 17, maybe its different. Yet I had my thymectomy, and had a thymoma the size of a baseball which never even showed on a CT scan. Supposedly it grew in 2 months. Unsure of how that happened. Yet I was ordered to have 6 rounds of PLEX before my surgery because i wouldnt have made it through if not. (supposdely) So, i did, and after surgery I got collapsed lung and had an extended stay. Yet thats not the problem. I begin to develop worse symptoms about 3 months out, chewing and swallowing problems, along with hardly being able to walk, and went to the ER. Mind you this has happened about 5 times over a 4-6 month period. About once a month since november. I had my thymectomy in september.

Sorry it might seem very confusing. But I understand what you are going through, and how hard this is.

But ive just had to have my 32 plasmapheresis session a few weeks ago, and thats all the can seem to figure out. I would also hold off on pred and imuran. Im on pred and cellcept, and the sideaffects are HORRIBLE and nothing is working yet.

Hope your husband is faring well.