After having tests for JAK2 and EXON12 mutations (both negative) and a diagnosis of Secondary Erythrocytosis ruled out through extensive testing, I was recently diagnosed as having MPD Unclassified and MPN Unclassified. My bone marrow shows both a Myeloproliferative Disorder and a Myelodysplasic Disorder (Unclassified type of Leukaemia).
Over the past six months my symptoms have got progressively much worse. I can barely do the stairs without being breathless, really bad hot sweats and also very disrupted concentration/memory.
My consultant believes regular Venesection to render me Iron Deficient is the best treatment to slow the progression.
However I know my mind and body and despite regular venesections to keep HCT 0.45 and Ferritin <10 my symptoms keep getting worse and quality of life continues to deteriorate.
I don't really feel listened to and I'm getting really down, I feel the current treatment isn't working but the consultant doesn't seem to offer any other options, and in the meantime I feel life is passing me by!
I'd appreciate any feedback or thoughts of other members.