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My initial diagnosis resulted in 4 separate stays each lasting 7-8 days. The hospital insisted on treating me with plasmapheresis the first three times along with Mestinon. Finally they realized the Plasmapheresis was nothing more than a bandaid that lasted at most two weeks. Finally i was put on IVIG and then transitioned to Soliris and now Ultomiris. I have not been in the hospital for three years.
Some of the things I learned. Before you go get all your electronic devices and chargers together. Because my speech was heavily compromised I took a clipboard with ample paper for communication.
The most important thing I learned was to stand up for yourself. Most of the nursing staff were good people but I had a couple of incidents where I had to get management involved because I was not receiving the quality of care that I should.