hi,
i posted a few months ago in AA, as i had AA 17-18 years ago and suddenly my blood counts were bad this year (along with many other aspects of my life). After being diagnosed first as having an hemolytic autoimmune anemia and treated with lots of cortison and Mabthera for 7 months, nothing was really working. They then said the next step was splenectomy, I went to see another doctor who diagnosed PNH. i still don't know if this is good or bad news...
i'm now on fraxiparin, he lowered the cortison, i had a bone marrow biopsy and aspiration. I don't know what's next... i'll get all the results next week. i only know for the moment that my kidney is not doing well. i have severe migraines.
For those with PNH, how are you coping? i need positive feedback today please
i live in Switzerland, alone with my 4 year old daughter. Not easy to be a super mum when weak and ill and today I'm feeeeed up!
thanks for reading...
anja