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My journey with gMG began with diplopia. I was misdiagnosed by an Ophthalmologist with 4th Nerve Palsy. Approximately 2 months later Dysplasia and Dysarthria arrived at the same time. I was in an exacerbation phase. Over the next 3 months I was hospitalized 4 times each time going back into exacerbation. The first 3 times they kept using Plasmapheresis to stabilize me plus Mestinon, Cell Cept and Prednisone. That only resulted in me returning to the hospital every 2/3 weeks. The 4th time they started me on IVIG which stabilized me while inducing extreme fatigue. Ater approximately 6 weeks I was transitioned to Soliris. I was able to stop the Prednisone and my fatigue gradually lessened. After 1 year I was able to exercise again. I spent 2+ years on Soliris receiving infusions every 2 weeks. I had no side effects. The side effects I have I attribute to the Mestinon. At 2.5 year mark I transitioned to Ultomiris which acts similarly to Soloris but only requires infusion every 8 weeks. That has meant a greater freedom to live my life the way I want.
So I am approaching the 6 year anniversary of my diagnosis. I am a 73 year old male able to live a relatively normal life. I give credit to my Neurologist and Alexion for his care and their development of the infusions I take. I have not had anything even resembling an exacerbation since 12/19. I know everyone is different but I would urge all gMG patients to ask their neurologist about Ultomiris. It did not change my life but allowed me to live the life I expected at this age.