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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
Update: Now that my hematocrit runs about 45% and I am taking a tiny amount (19 mg.) of Wellbutrin, my brain is functioning again. I just finished my fourth year of law school with a 3.8 GPA for the… read more
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
I looked at it for my daughter who has POTS & fibro but was thinking it might work for MPNs too?
As fatigue is the most frequent symptom in MPNs, managing fatigue helps with improving quality of life. An activity tracker could help, especially if you have a professional like an occupational… 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
I don't agree with Tatiana but won't argue about that. Best wishes to all.
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
I found out I have hypothyroidism, I had a hysterectomy in November. It is not as bad as last year, but continues to happen. Was hoping someone can provide some guideance.
Regarding thyroid: I've been treated for Hashimoto's thyroiditis for 40 years. 100 mcg of Synthroid has kept my thyroid level normal, ever since the correct dosage was found. Also: Does… read more
