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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: 8 hours ago | Replies (400)Comment receiving replies
@margrethe Wow your numbers aren’t that high so I will think positively that you wind up being negative. They will do a Jak2 blood test to confirm PV. It can take weeks for results. May I suggest you call to see if you can do it before your visit so the results will be in time for visit? The waiting is torture! This site really does help and make you feel like you’re not alone ❤️
Replies to "@margrethe Wow your numbers aren’t that high so I will think positively that you wind up..."
I agree with these comments. Your #’s are not that much out of whack especially considering how much they came down after increasing your water consumption.
I’m betting a lot of the reason for your #’s and symptoms is related to dehydration. Stay on top of that day and night- even if it causes you to need to pee a lot more. Do that all the way till your July visit. And let us know how that goes. Best of luck.
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I also think the numbers aren’t extremely high! The symptoms are spot on with what I’ve been struggling with, but after the month of personal lifestyle changes and aspirin the numbers did lower. I decided to ask for another round of blood work today just to see where we are again. I mentioned to my doctor about the Jak2 mutation and she assumes the Hematology/Oncology place will do all of that. We will see. I do hope, even if it is proven to be the wrong diagnosis, that they can find something to help with these symptoms. It is so disheartening to run in circles. Thank you for your reply.