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Amy, Plex (Plasma Exchange) helps me a great deal, especially with swallowing. I have had 116 treatments over the past three and a half years. My neurologist and I hope I can wean from Plex as soon as we find an effective medication regime. For now, every two weeks I go to an outpatient apheresis unit of a local hospital for the treatments. Each treatment takes about two hours — for some people it takes a bit longer. So far, I haven’t had to have a port installed since the nurses have been able to use the veins inside of my elbows. Anyone, please feel free to ask me anything about my Plex experiences.
My first MG symptom was double vision — although I remember being bedridden the previous summer during a heat wave, which was probably an MG symptom. Since I am seronegative, I had just about all the classic MG symptoms for over twenty years before being diagnosed with MG. My SFEMG was stopped early at 16 pairs, 4 of which showed abnormal jitters.
I am thrilled about this thread and about the possibility of meeting other people with seronegative MG via Zoom. Count me in!