← Return to Polycythemia & Bone marrow Disorders screening

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@loribmt

Welcome to Connect @mahmoudbakry. Diagnosis blood conditions can get a little tricky. It’s often like trying to unravel a mystery. Your doctor has checked everything he can through blood analysis and looking for acquired genetic mutations which can be the cause behind elevated blood counts.
Since the usual suspects have been ruled out, it’s time to go to the source of blood manufacturing in the body, which is the bone marrow.

A bone marrow biopsy sounds much worse than it is in reality. I’ve had 13 of these done while undergoing treatment for an aggressive leukemia. There’s a debate by many members in the forum as to the benefit of having a light sedation or just having it done with local anesthesia. Most often it is with local anesthesia to the site of the biopsy.

The biopsy is done usually on the lower back, on one of either side of the spine near the large dimple over the bum area. It is done with a needle inserted into the upper hip bone there. The area is injected with anesthetic first and then the sample is taken. It can feel like a pulling, tugging but it’s not a sharp discomfort. Some clinics offer a mild sedative and that can be helpful as well. This biopsy will give your doctor a clearer picture of your marrow’s ability to produce healthy blood products such as red & white cells and platelets.

Polycythemia vera is the overproduction of red blood cells. There can be a number of factors relating to this besides having a mutation or myeloproliferative disorder. There is such a thing as secondary PV.
You’ve had the genetic testing and the reports have been negative. PV can also be triggered by a lack of oxygen that calls for the body to produce more red blood cells. People with sleep apnea or who live in high altitudes can develop PV. I see that you’re a pilot so that may potentially be a correlating factor. It may be altitude related which may explain why you’re not finding anything wrong. Do you fly in non pressurized aircraft?

Here are a couple of good informational articles about PV and the causes.

https://www.verywellhealth.com/polycythemia-vera-disorder-overview-2252550
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https://www.healthline.com/health/secondary-polycythemia
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https://www.healthline.com/health/polycythemia-vera

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https://www.verywellhealth.com/facts-about-polycythemia-vera-5704078

I really do understand the anxiety that comes with needing these tests and then waiting for the results. But it’s much better to face these things head on and deal with them. You’re an airline pilot! That takes some real courage. You can do this! 😉 I encourage you to go through with this test. Will you let me know what you found out please?

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Replies to "Welcome to Connect @mahmoudbakry. Diagnosis blood conditions can get a little tricky. It’s often like trying..."

Unfortunately I’m not a pilot 😂,you can say I’m an airline ground dispatcher pilot ,I don’t fly.
When I asked the doc maybe it’s sec pv,he told me that my EPO results was 9.5 and it’s very normal and I don’t have any disorder in the kidneys,liver,heart and lung.he also told me that the city or the country which I live isn’t above sea level.
He told me I must to undergo bone marrow biopsy and aspiration and it’s not because my hemoglobin goes up a lot of times but because there’s no sec reason for it ,so it have to be the bone marrow,so he wants to make sure the bone marrow is normal ,because maybe I have abnormal cells or myeloproiferative disorder or maybe myelofibrosis or even familial polycythemia.
So could I have genetic disorder in the bone marrow even though no history of cancer diseases for my family parents or generally any disorder even though all blood tested such as jak2 or bcrabl,mpl,calr came negative ?