To BMB or not?

[Confusingdisease]

Hello everyone, I’m 26 years old & have always been suffering with health anxiety. I went to get my annual physical and all was well except I had an elevated red cell count at 5.9, hemoglobin at 18.3, and hematocrit at 53.1 & platelets were 410, but since I have had a phlebotomy my platelets have remained in the low 300’s. It does bug me that labs have different “normal” values, my cancer center app would barely have 5.9 RBC’s in range. I live at high altitude in Denver, CO & my GP suspected this was the reason why. However, I have high white blood cells at 11.7 and it’s only my neutrophils that are high but I have dental fillings that need to be done & maybe a root canal, so not sure if that could be the reason as to why my neutrophils are high or not. Anyway, I got a venesection and rechecked my levels at 4 weeks & everything thing was back in the normal range. I tested negative for the JAK2 mutation & my EPO was 8.0. I suffer from burning feet periodically & a little numbness, but I’m not sure if that could be my anxiety or not or something completely unrelated. This was after my second opinion because my first heam said nothing was wrong & that I’m healthy, but she did no testing whatsoever. My heam explained it to me that if I had the mutation, my red cell count would still be high and my hematocrit would be in range in absence of cytoreductive therapy after a phlebotomy. It’s been really messing with my head that you can have PV & somehow be negative for all the mutations with a normal EPO or somehow your jak2 mutation was missed because not sure of the accuracy of the tests. It’s probably important to mention I never suffered from burning feet periodically or numbness whatsoever before all this came about. My heam says he highly doubts an MPN, “No evidence of basophilia, myelocyte bulge or indicators of MPN” Not sure what to do

[Pinktulips]

Hi! I have ET Calr and suffer a lot from burning feet and numbness especially in the morning.

Have you discussed with your Haematologist about having an Bmb? Maybe that would confirm if you do really have an MPN.

Best of luck!