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I was diagnosed with PV in 2017, switched doctors bc they couldn't give me any answers. Finally got into the cancer center which did testing. My GIEMSA stain test came back abnormal the pathologist report says Mild Erythrocytosis and Polycythemia. Jak2 test came back negative, my epo is normal, but my hemocrit and hemoglobin are high not extremely just a few points higher than normal. My NCHC is higher than normal, bun and bun/creatine ratio are both lower than normal range. Neotrophil is slightly higher than normal, anion gap is high, mean platelet volume is always low, ast/Scot is low, alt/sgpt is normal. The oncologist said I do not have the PV bc my Jak2 was negative but do have mild Erythrocytosis but I cannot find any information about Erythrocytosis that does not say that it isn't PV. So I am a little confused about it.
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replied September 12th, 2018
Thank you for asking at Ehealth forum!

I read your question and I understand your concern.
JAK2 mutation is confirmatory test for PV.
Hence, you are safe.
Besides JAK2 there would be symptoms like headache, facial flushing and there will be spleen enlargement.
I hope it helps. Stay in touch with your healthcare provider for further guidance as our answers are just for education and counselling purposes and cannot be an alternative to actual visit to a doctor.
Take care
Khan


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replied September 14th, 2018
Well there's the thing. I first went to the doctor and when they told me I had this last year I went bc I began having occular migraines and will go blind for hours, my blood gets extremely thick, I can't breath at all in humid air, that's why I went to the doctor last year. Not to mention when I take hot baths I am covered in hives shortly afterwards. But I am told none of these symptoms are related to PV bc of the neg jak2. This past week after numerous er visits for headaches, chest and abdominal pain I'm developing clots, my spleen and liver are now enlarged and my bp is uncontrollable. Plus they found swollen lymph nodes in my colon and intestines. I've been awake for three days now due to excruciating pain. I'm at a loss on what is wrong. I'm tired of being told I'm fine and not being treated for anything. I was convinced maybe it was all in my head until I got my ct scan results that proved it is not in my head. I'm so miserable and fed up.
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