Hi. I just found this group. Here is my story. I was diagnosed with MG 2 1/2 years ago. I had a thymectomy done last June. After recovering from sugery all was good until May of this year. Since then it has been all down hill. Prior to sugery I was on immuran 250mg per day and IVIG once a month and Keppra for a seizure disorder. After surgery I had one IVIG treatment and was feeling great. I thought I had this whipped. Then in May I started getting weak again. Had more IVIG but did not seem to work. Had monthly treatments in june, july and august. Since the last of august I have had 3 more treatments with no significant change. Dr. also put me on mestinon but that dosen't seem to be working either. I don't know where to turn next. I have not been to work since the end of august and wonder how long my employer will put up with this. To coomplicate things I also have a seizure disorder that gets worse when I get fatigued. Off course after I have a seizure my body is wiped out for at least 2-3 days because of the MG. Dr. is thinking about doing plasmapheresis treatments. Has anyone had these treatments and did they work? Thanks for letting me tell my story.
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