MG & Vision

I am 68 years old and I was diagnosed with MG last March when I woke up one day and I had double vision and I couldn’t open my left eye. My home health nurse and I Googled symptoms and everything kept pointing to MG. I told my PCP and she ordered heart studies and CT scans and EKGs. Finally my Rheumatologist saw me and knew something serious was wrong with me as by that point I was unable to hold my own head upright. She sent me to the lab and to Urgent Care to be evaluated. The bloodwork showed a high level of Acetylcholine receptor and binder. She sent me to the Neurologist and he did the ice pack test and it was positive. I had MG. I was put on 80mg prednisone, CellCept & IVIG and everything cleared up fairly quickly including my vision. I was having migraines after every infusion so I sought out a 2nd opinion on the medication. I saw that Neurologist last June and she was able to get me off the prednisone and CellCept and started Soliris. That was in November. By December, I started noticing that everything was blurry; not double, just like when you take a picture and your hand moves slightly. In January it was disturbing my vision enough that I saw the Ophthalmologist who put prisms in my glasses and that worked! Everything was clear again. Then came May….& the I’m blurry worse than ever. I can’t read stree signs and I have no idea how far away things are at night. I stop driving at night it’s so bad. I told my PCP and she got a referral to a Neurologist at Loma Linda. I saw her on Monday and she wants me to try Vyvgart to see if my symptoms improve. Not being able to see well is motivation enough for me to try it and hopefully it will help improve my vision. Is anyone else experiencing this issue with your vision? What, if anything, has helped you???