Lilithe,
Good luck getting a handle on your illness and what you can do about it. I hope you'll be able to consult a PNH specialist.
You must have run across the
PNH mentioned on "House" TV show thread. There were a surprising number of "House" episodes that touched on bone marrow failure. Maybe my family is just attuned to notice them because it's a medical area we're familiar with, but AA, MDS, and PNH seemed to have just the right combination of mysterious symptoms, terminology, and diagnostic challenges to suit the writers of that show.