Polycythemia & Bone marrow Disorders screening

Posted by mahmoudbakry @mahmoudbakry, Feb 24 11:57pm

‏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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mahmoudbakry | @mahmoudbakry | Apr 12 10:33pm

In reply to @janetlen "Mahmoud - haven't heard from you in a while. What were the results of the biopsy?" + (show)

Hello,how are you all ?❤️
Well ,my biopsy results:no evidence of granuloma or abnormal lymphoid cell or Cellular infiltration.just few dysplastic forms and focal areas of fine reticulin deposition (normal to mild increase).
Now There is a disagreement in diagnosis between 3 doctors,
The first doc sees that I have primary myelofibrosis (PMF) with low risk asymptomatic,but no big evidence for it and he's just holding and watching.

The second doc sees no prove at all that I have PMF,but he wants me to go under another bone marrow biopsy to test (myeloid ngs) to make sure everything is good.

The third doc sees no need at all to have another biopsy especially the first is almost normal and nothing serious required another biopsy ,he thinks it's secondary PV and asked for some liver tests (AMA,ASMA,LKM,LIVER FIBRO SCAN)

nypara66 | @nypara66 | Apr 13 6:59am

In reply to @mahmoudbakry "Hello,how are you all ?❤️ Well ,my biopsy results:no evidence of granuloma or abnormal lymphoid cell..." + (show)

Go with the least invasive for now. Secondary Polycythemia would really be the least damaging. Once you find the cause, you can be free of it. Good luck!

janetlen | @janetlen | Apr 13 8:54am

That is some medical system you are in with 3 DRs trying to decide what is wrong. I would be very confused. What are you going to do? It has taken 2 years to get to this point? I am glad your symptoms are mild. I had an aunt who had MF. Thirty years ago there were not many options to keep patients alive. She eventually developed luekemia and died. I understand there is a new treatment that cures MF. Can you ask your three DRs about that treatment?

janetlen | @janetlen | Apr 13 9:04am

Apparently the new treatment does not cure the disease. See this thread: https://connect.mayoclinic.org/discussion/long-awaited-drug-for-mf-has-been-released-httpswww-smh-com-aunat/

sofiagrace | @sofiagrace | Apr 21 4:17am

Have they tested for porphyria? Your symptoms seem familiar, but they can say other things as well.. took them 46.5 years to figure it out with me!! Chonic fatigue, nausea, constipation, vomiting, stomach cramps, female problems, headaches, back pain, the list goes on and on and its neverending for me.. I will say a prayer for you!

Colleen Young, Connect Director | @colleenyoung | Apr 29 11:11am

In reply to @sofiagrace "Have they tested for porphyria? Your symptoms seem familiar, but they can say other things as..." + (show)

Welcome, @sofiagrace. I see that you mentioni porphyria. If this is a diagnosis that you have experience with, I invite you to take part in the porphyria discussions here:
- Treatment for mild porphyria
https://connect.mayoclinic.org/discussion/treatment-for-mild-porphyria/

- Porphyria Cutanea Tarda (PCT)
https://connect.mayoclinic.org/discussion/porphyria-cutaneous-tarda/

- Who do I see for porphyria?
https://connect.mayoclinic.org/discussion/who-do-i-see-for-porphyria/

splashgirl1961 | @splashgirl1961 | Apr 30 5:05am

I went thru bone marrow aspiration in February without anesthesia just local to injection. I’ve had dentist hurt me worse. Mine came back showing iron storage issues in bone only not blood. But genetic testing showed two genetic mutations. One pre-leukemia and one TP53 which is more heart related which explains a lot of my ongoing cardiac issues. A dx or classification of CHIP! The fear of biopsy is greater than the procedure itself. Good luck. All my RBC, hemoglobin and hemacrit have been off charts for 3 years.

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