I am 57 and was diagnosed with MG in January, had thymectomy in February, went on Mestinon 60mgX4 hrs and was doing OK (not great) until early July when symptoms gradually became worse. My neuro put me in hospital last week (Mon-Fri) for 5 IVIG treatments, so it's been over a week ago and I have been worse than when I went in! He also started me on Cellcept (500mg-2Xday) and Prednisone (20mg-1Xday) and increased Mestinon to 90mg-every 3 hours during the day and a 180 time span Mestinon at bedtime. I have been experiencing VERY heavy arms, legs, chest, head and neck (feels like everything is being dragged to the floor!), as well as dizziness (or unsteadiness). I am unable to drive, work, or do much more than a few tasks around the house in the am, then spend time on the couch in the afternoon/pm. Today I have pain in my lower back...and sharp pain when I walk in my upper back under my rib cage. Also horrible pressure headache and pressure behind eyes. I did get aseptic meningitis from the IVIG after 3 treatments, but they gave me more Prednisone and Tylenol to get rid of it. This sort of feels like the beginning of that pressure again, but it's been over a week, so I can't imagine that is the cause.

I really thought that I would dance out of the hospital after IVIG, but that was far from the case! If anyone has any words of wisdom they would be greatly appreciated! Trying to be patient with the treatments, but it seems like things keep getting worse instead of better...