Confused

[Scrappinggolfer]

Doc told me yesterday I have some scarring in my bone marrow, but all my blood levels seem normal. So we are just going to monitor the situation. Not sure if this is good or bad news.

[Minu68]

Hi , do you have an MPN?

[Scrappinggolfer in reply to Minu68]

Yes, but hematologist was not clear after tests which one. Probably ET because of the clots that are showing up. But my blood tests were good. This past time. Biopsy shows some scarring. Can't be on blood thinners yet because they are also treating me for some esophageal varices which are because of the clot I had I'm my hepatic vein.

[hunter5582 in reply to Scrappinggolfer]

Some MPNs do not fall neatly into any one of the typical categories between ET-PV-MF. In fact, some doc look at the MPNs as a continuum of disorders where the lines are not always hard and fast. Thrombosis as a symptom is not necessarily directly related to your platelet levels. it is more complex than that. Were you positive for any of the MPN driver mutations (JAK2, CALR, MPL)?

[Scrappinggolfer in reply to hunter5582]

Positive for Jak2

[hunter5582 in reply to Scrappinggolfer]

Perhaps you will be one whose MPN falls into the atypical category. There are also people with the JAK2 mutation who have no symptoms at all. It is quite complex.

Has the doc discussed myelofibrosis with you. Not sure if it applies, but based on the level of scarring in the marrow it might be something to ask about.

Something to be aware of is that not all hematologists have much experience with MPNs. You may want to consider getting another opinion from a doc with MPN specific expertise. Here is a list of docs recommended by other MPN patients mpnforum.com/list-hem./ .

Hope you get answers soon

[Scrappinggolfer in reply to hunter5582]

Thanks for your help.

[Paul_1971]

Hi

I have PV but my BMB showed some scarring.

I dont think its that unusual for many of us to have some degree of scarring.

Would say its neither good or bad news, just a fairly normal thing for MPN patients

Paul

[Scrappinggolfer in reply to Paul_1971]

It is all rather unnerving. It would make me feel better if the doctor had time to explain things better.

[Paul_1971 in reply to Scrappinggolfer]

This is one thing i think i have noticed more that people dont always get matters explained to them properly.

My recommendation is next time you are due to see your doctor take a pad with you with your questions written down

It is so easy to come out and think what did that mean, or i didnt ask that.

Good luck