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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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I have MDS.
Oh MDS ! How old?Which type?How did you diagnosed with it ?
I was diagnosed last year. I have MDS with del(5q). The initial diagnosis was confirmed with a BMBx.
I've had the BMB and they did use a local anesthetic. They had the bed set up so I was near the wall when they worked on me. That way I was able to push against the force of the collection device. I don't know if that was their intention but that is how it worked out. As a woman, I've had much worse every year. It was over fairly quickly.
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1 ReactionHello everybody,so this picture is my bone marrow biopsy results,I went to the doc and he told me that’s really good,no evidence for any cancer. He told me that he would no longer care about the cause, but would care about the reticulin stain grade which I colored it by Red in the picture. It must be followed up every month by LDH,CBC , and if my LDH high and Low red blood cells , he will begin immediate treatment for the fibrosis in the bone marrow.
So is it right what he said that my reticulin grade 1 is normal and doesn’t required treatment??
And I searched about it on google but every time shows myelofibrosis and it’s rare blood cancer type,how and my biopsy results no cancer ?
I asked the doc about my grade 1 he told me because your bone marrow has begun to tire from excessive production of red cells, is this different from myelofibrosis, which is a type of blood cancer?
Bad news last time at the doc office,
the doctor told me that I suffer from pmf primary myelofibrosis with low risk asymptomatic and treatment for it later is Jakavi (ruxolitinib).
There is a disagreement. Another doc wants to re examine and to have another bone marrow aspiration
Hi @mahmoudbakry. Sometimes diagnosing a blood condition can be like unraveling a complicated mystery with an overabundance of suspects. You’re giving your doctors a good run with their sleuthing skills!
So, one doctor feels you have myelofibrosis. Another doctor disagrees and wants more testing. Has that doctor discussed another theory?
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1 ReactionYou know that my doctor called that another doctor by phone in front of me!! And told him that I'm complicated case ,the other doctor said we can have another bone marrow aspiration by himself not just any hospital,but my doctor don't agree with him to have another aspiration but he also told me there's something holding him to diagnose me officially with pmf !
He told me I need big something,big evidence to diagnose you with pmf and starts treatment and he can't find that one yet and he also worried that I'm not officially pfm patient
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1 ReactionMahmoud - haven't heard from you in a while. What were the results of the biopsy?
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