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.
Posts You May Be Interested In
theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...