-
Continence…not mentioned much in this chat, but I’ve seen others with MG complain; I suspect it’s under-reported. I miss not having to be so vigilant about aspirating food and other aspects of life. The largely unpredictable roller-coaster of fatigue doesn’t help. I’m on Soliris which is a god-send, however, a word of warning to anyone reading this who is on infusions: my provider prescribed my infusion medication six months out in September, but left his practice shortly thereafter. Yesterday, when I was literally seated at the infusion center, I was refused treatment. The insurance company no longer recognized my provider and I was NEVER NOTIFIED. If your provider does not follow protocol for transitioning you, you will be left hanging. In my own case, due to the holiday, I was already 30 days out on a 21 day rotation and am now in danger of MG crisis until I can get re-established care. Emergency room doctor was able to put me on prednisone until resolution.