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Hi All,
I am a 62 y/o law student. Over the last nine months or so, ever since my polycythemia diagnosis, I have noticed trouble recognizing, remembering, and naming other law students on my campus. These are people I feel I should know. I wonder whether my blood-sludge is decreasing oxygen transport to my brain. I worry that this problem will get worse and affect my capacity for critical analytical thinking.
Online reading has not indicated polycythemia as a reason for such memory trouble… read more
Thank you, Tatiana. Very helpful information! It's good to know I am not alone here. I will follow your research links.
My skin is itchy after a shower but now I am having episodes through the day for no reason. Does anyone know a solution I am going crazy
A pinch or 2 of Beta Alanine in my coffee or tea or any kind of liquid in the morning everyday. Too much of it and it also causes a kind of a tingling itch. Over time, you can add a little bit more… read more
Hello all, let's starts by saying how grateful I am for this group. I enjoy knowing I can go here and ask questions with overwhelming and writing my own family. You all are my MPN family.🥰 So I am 47 and I am a teacher, and the teachers Union President and the head of the World language department and a mom of 2 and I'm getting older. So everyone understands that by itself is stressful. My question is, how do I know if what I'm experiencing is a new symptom or just life, I'm guessing I go with… read more
Dead Janice,
Type A personality that you describe (energetic, high-functioning people) is a myth that does not hold up in scientific research. It was a myth used in the past to blame illness on the… read more
I have PV
Dear Ruth,
I am lucky to have access to information and to be in a community of people with other types of chronic illness who share a lot on information and new research. As they share with me, I… read more
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… read more
The short answer to your question is that VAF does matter. It is linked to progression and symptom burden; however, there is not a 1:1 correlation. The reality is far more complex than that.
The… read more
The official information is that there is no cure. I could read about the odd case that went into remission, but that seems to be more the exception than the rule. Several of those cases needed bone… read more
I have ET/JAK2 mutation.
Yayyyy. You go, girl!!!
