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Polycythemia & Bone marrow Disorders screening
hello everyone good morning And it’s great to talk to you.At the beginning of 2022, I began to feel terrible pain in my stomach. I went to an internist, and he made me underwent cbc test, which showed that hemoglobin was 20. He ordered me to see a hematologist, who in turn for 2 years made me underwent a lot of exams for the heart, then the kidneys, then the liver, and hepatitis viruses which all came back normal .And the lung,he also asked me to donate blood more than 12 times in 2 years and he gave me a lot of time after every blood donation to follow up the hemoglobin.and he made me underwent these tests:
JAK2 V617F & JAK2 Exon 12 which came back Not detected
BCR ABL not detected also
MPL & Calr Mutations Not detected also
the problem is that he told me that I must undergo a bone marrow aspiration & biopsy to make sure that there’s no disorder in the bone marrow because there is no secondary cause for high hemoglobin, and that hemoglobin always goes up after a while from the blood donation and the spleen is moderately enlarged, and that I am not Smoker.
I am terrified of undergoing a bone marrow aspiration biopsy,What should I do?
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Bone marrow biopsy is an easy procedure, i had it done right in my hematologist office.
You’ll need one to make an accurate diagnose.
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2 ReactionsWelcome 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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2 ReactionsHaving one on Tuesday.
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1 ReactionGreat! Best of luck
Welcome to Connect, @wozsgal. We have quite a few discussions in our forum about bone marrow biopsies. They’re used for a number of reasons, usually to help diagnose a blood condition and to give your doctor a detailed look at the overall health of your bone marrow and its ability to provide healthy red and white blood cells and platelets.
If you don’t mind sharing, what is the reason for your biopsy? Do you have any questions you’d like answered?
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1 ReactionI'm having it to figure out exactly what is going on. My doc told me I have some kind of myleoprolifative disorder and this is to determine exactly what it is.
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1 ReactionI’m happy you’ve joined Connect. I think you’ll find it a great source of information and a welcoming community of members who share your similar conditon. It can help to know you’re not alone with a diagnosis.
There are a number of myeloproliferative disorders so when you find out which one is your flavor, let me know and I’ll introduce you to the right support group. In the meantime I hope you’ll mosey around the forum and join into a conversation anywhere you feel comfortable.
You mentioned you’re having a bone marrow biopsy (bmbx) this coming Tuesday. It can take a good week or so before all of the result details are returned to your doctor. Do you have a followup consult date? Is this with a hematologist?
Did you felt sharp pain during or after it? What did it feel like when you were given local anesthesia or the moment when the needle inserted into your marrow?
I haven't had it yet.
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 ?