I too am sorry for your experience. It is amazing how each of us have difference reactions to treatments. I have MG and SPS so I'm dealing with one very rare autoimmune illness (SPS). I was given mestinon when my first symptoms of SPS materialized. That put me in CCICU for a week where I was intubated and almost experienced congestive heart failure.

I have had 5 IVIG treatments with every little results, mostly with spasms. I had 12 plasma exchange treatments (all out patient) with no result what so ever and no adverse reaction.

I hope you can find something that will help you feel better. I have found that everything seems to be trial and error and we are all guinea pigs.

Southern Bell