Myasthenia Gravis News Community › Forums › Life Hacks and Tips › Ocular MG – Hacks, tricks, tape, etc? › Reply To: Ocular MG – Hacks, tricks, tape, etc?
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Member77 yo male. First MG symptoms appeared June 2021. Breathing difficulty, double vision, drooping eyelids, couldn’t hold my neck up, weak arm and leg muscles. The Hospital Emergency Room in San Francisco referred me to a Neurologist who specializes in MG. Several doctors at the hospital said he is an expert and has patients coming from around the country for treatment. He is part of a current clinical study on an MG drug. I was in the hospital for 9 weeks. Had 3 plasma flushes and 2 IVIG infusions, plus medications. Was discharged when breathing and muscle strength improved, but other symptoms hadn’t. I’m currently on 12.5 mg of Prednisone (down from 50 mg), Imuran 50 mg, Mestinon 6o0 mg 4 times a day, and Glycopyrrolate (Robinul) 1 mg. I had an at home IVIG infusions a month ago and all of my symptoms dramatically improved; no more drooping eyelids or double vision, no more drooping neck, can now reach over my head with no problem. , leg muscles improved. not as tired. Basically I can do everything I could pre-MG but in moderation. Find a Neurologist who is a specialist in MG, most are not but can do basic treatment. Sounds like you need a real expert.