-
I was diagnosed with gMG at age 79 and went into crisis a few days later (I had had increasing symptoms for several months, undiagnosed by my doctors … until I saw an experienced neurologist but then it was too late. I had low oxygen and breathing difficulty, ended up on a ventilator in ICU and had five sessions of plasmaphoresis there which seemed to do did wonders for my respiratory problem. Also had double vision, chewing weakness and some swallowing difficulty. They got me out of the ICU and on mestinon and 60 mg prednisone which helped my vision problems, chewing weakness, neck control and swallowing issues. Had three sessions of IVIG while still in the hospital so they could see if I had any bad side effects, Was discharged with orders for IVIG every three weeks. In my case saw no bad side effects – but also no noticeable benefit – from the IVIG so we dropped it back to every six weeks and then to every eight weeks. Last couple of IVIG infusions I got very tired for two days after the infusion and had some unusual bleeding after the last one but still no noticeable benefit. Have now stopped IVIG and see no difference in symptoms. Am on reduced prednisone (10 mg) but also started Imuran since about six months ago. I am now stable, breathing well and getting good blood oxygen levels but I still have some vision and balance issues, so I walk with a cane for safety.
I think IVIG must be another issue where we are all different in our responses so we each have to work with our neurologist to figure out what helps us and do that. There is no turnkey solution for this condition at the moment.
I wish everyone here good luck and a good neurologist who will try to find out what works for YOU!