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Polycythemia & Bone marrow Disorders screening
Blood Cancers & Disorders | Last Active: Apr 29 11:11am | Replies (76)Comment receiving replies
Hi, I had all the classic symptoms of PV and at my annual visit my bloodwork showed high HGB. We retested in 6 weeks, higher so off I went to 1st oncologist. Then 2nd who still wasn't listening to my concerns about being Jak2 neg and only 5% or less PV cases are Jak2neg.
Went to a 3rd, who agreed with my hunch & we did the BMBX.
He's a hematologist oncologist and I definitely have no blood cancer so it's likely Secondary Polycythemia. Could be a cancer lurking somewhere, we wasted 9 months and now we're doing CT scans with contrast etc to check for any malignancies in my ovaries, abdomen, lungs etc.
Will also get a sleep Apnea test done, I don't snore etc but you never know. It could be as simple as that's what's causing my body to produce too much HGB.
I'm just going to keep pushing until I feel better and have answers. I was extremely active daily with work, sports etc and the joint pain and fatigue have been debilitating. It is quite a bit better being in Florida visiting my daughter, I've always been a cold weather girl but maybe hitting 60 is making me more of a snow bird?? I'd DREAD the thought, I'm an avid skier (not this season obviously).
Keep pushing for answers, go with your gut, do lots of research and ask many questions- write them all down before any doctor visit.
Hope some of this helps.
Replies to "Hi, I had all the classic symptoms of PV and at my annual visit my bloodwork..."
Hello,
Did you say skier? Are you aware that being in high altitudes thickens your blood and can raise your blood counts? I was diagnosed with PV 13 months ago at age 56. Shocked can’t begin to describe hearing that but I too was always healthy and no daily meds
What so ever. It was a rough first year but now I have a pretty good routine. My point was anyone with certain blood disorders can not be in high altitudes due to it thickening your blood. My friend had high blood counts and the doctor was doing all kinds of tests and then she revealed she was a skier and that was what caused it. You did say you have not skied this year so this is a long shot but something you should definitely speak to your doctor about. Good luck!
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Yeah we will go all the way ,my hemoglobin always within range 17-19 even though my blood donation .my dr wanted first to rules out secondary PV,so he checked the liver function,hepatitis viruses and came back negative only little fat liver and high alt levels then kidney function and EPO test and turned out very normally.then asked for an ultrasound pelvis-abdomen and it revealed normal no masses or focal .normal pancreas,prostate etc.and finally asked of an ultrasound for the chest and heart and lungs and they working perfectly.then he asked for iron test and it was very normal .and he told me well now we must check the bone marrow to confirm or rules out primary PV,or marrow diseases.so I’m going to do the bone marrow aspiration biopsy on march 6