My doctor said my MPN reflex panel is negative for any mutations, but he still said I have Polycythaemia Vera. Can anyone please explain? As of now, my hemoglobin and haematocrit are not out of range. Can anyone please explain what is going on?
I was only given the full diagnosis for PV after the test for the JAK2 mutation came back positive. So I can't answer your question because it sounds strange to me from what all I have read and learned since my diagnosis in September 2023. Five phlebotomies brought my numbers all in range but I still have PV and those numbers could go up again as my body decides to keep making more red blood cells.
Reaching out to others that have been diagnosed with PV (Polycythemia Vera) to "pick their brains".
I’m not sure if this is correct but I’m reading more patients dx with Polycythemiavera than of ET ? Does that mean ET is progressing?
Has everyone who's been diagnose with an MPN had a bone marrow biopsy done?