I m 40 yrs old male. For last 4 years i observed hb little high 17 something and rbc little over normal with hct over 50 at present. Searching the cause i came to the conclusion that i must meet a hematologist to rule out pv but doctor gave an b m aspiration test initially with jack2 test. B m aspiration report came which stated suggestive of penmeylosis. I m bit worried now as bone marrow is not functioning well. Waiting for jack2 result. I think i hv pv. My hand and feet burns which allays after drinking water. Nowadays i m sweating at night and also feel some fatigue. Is every pv case have penmeylosis or there are pv penmeylosis free. Pls give me ur valuable opinion.
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Spa1981
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It would be probably be somewhat reckless to try and give a diagnosis / advice on this specific question in a layperson online forum.
The important thing is that your doctor appears to be on your case and responsive.
I understand your anxiety at this time - everyone on this forum will be familiar with that feeling! But since investigations have been set in motion you should wait for the results of your JAK2 test. If indeed that turns out to be positive then you should ensure you are are under the care of a haematologist with expertise in Myeloproliferative neoplasms (MPNs).
If the JAK2 test is negative then it doesn’t necessarily rule out an MPN - there are other mutations - but it does suggest a need for further investigation. Again it is worth ensuring you are under the care of an expert haematologist. And definitely someone prepared to pass you on to someone more specialised as appropriate.
Certainly (a malfunctioning) bone marrow is implicated in MPNs but the potential impact is very wide ranging. The disease is entirely manageable. The key is early intervention and that’s precisely what you have set in motion right now.
Panmyelosis, which means that the bone marrow can't produce enough red blood cells, white blood cells or platelets, would indicate Myelofibrosis. With PV, you have too many reed blood cells and possibly too many platelets and white cells. The process of bone marrow fibrosis can occur as part of any MPN and is something that needs to be addressed if present. MPNs can progress and change over time, which is why appropriate care is so important.
None of us can tell you whether you do or do not have a MPN, though given what you have described it seems possible. What we can tell you is we have all been there and know exactly how it feels to find out you may have a MPN and are waiting for answers. You are very lucky that you doc is on top of this and seems to have ordered exactly the right first steps to figure things out. You will certainly want to consult with a hematologist who has expertise in MPNs if it turns out you have one. Not all hematologists have the KSAs to provide optimal treatment. Here is a list of docs with the expertise you may need, mpnforum.com/list-hem./ .
FYI - I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. At age 65, I am still alive and kicking! Most of us manage ET/PV for a long time. There certainly can be some challenges, but we can live long, rich and successful lives.
Please stay in touch and let us know what you find out. Know that we are here and will provide any support we can.
Hello Spa1981, I have asked the medical team for some advice for you, the reply is:
that you need to talk over the BMB result with your haematologist, and await the JAK2. Panmyelosis just means increase in all cell lines and CAN BE consistent with PV, is NOT diagnostic.
I just got the test report which confirmed jack2 mutation in my blood. do I need any more tests for accurate diagnosis. My doctor sought bcr abl, calr, mpl test.
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