Thank you and diagnosis question

Thank you for so many welcoming replies, I don't know any of you yet, but already I feel better, knowing your all there.

I do have a question, my haematologist has said that he's not sure yet if I'm PV or borderline MF, but my symptoms of high haemocrit, pressure headaches, red face, blurred vision etc from what I've read all point to PV, I had my first Venesection yesterday, if it's MF isn't that the opposite to PV, as in there's not enough red blood?

I'm a bit confused by all this, as I originally started off with high platelets but on Tuesday the dr said they had dropped to near normal, but the other levels have all risen ?

Thank you x

4 Replies

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  • There are many variables with MPN s and they can be at different stages. So early MF may not yet have low counts everywhere...

    If you are worried, do contact your Haematologist as they can explain what they are looking at and why that is leading them to particular conclusions..

    Hope that helps. Enjoy your weekend!

  • Yes I've written down some questions for him when I see him in 2 weeks. I just went blank when he asked me if I had any questions, so going armed with pen and note book next time haha.

    Many thanks

    Enjoy your weekend too

  • It sounds to me like you've got a good haematologist, who is correctly following up what you have described as a change in your bloods.

    Mary x

  • Hi

    You are correct that ultimately MF sees your counts decline, so is the opposite of PV in that respect.

    High platelet counts arent uncommon in PV patients too, they can be up and down.

    If there is any suspicion of borderline MF i would be looking st other factors too, is your spleen enlarged (although a lot of PV patients have this too), have you a history of anaemia at all.

    MF does usually start with an overactive period which gives similiar results to PV although most patients have this period without even realising it and only get diagnosed once the true symptoms of MF set in.

    It does sound like your doctor is covering all bases and you are in good hands.

    My diagnosis is PV but also borderline MF as i have fibrosis of the bone marrow but not enough to be full blown MF.

    The most important thing for you, whichever diagnosis it ends up being, is dont believe everything you read online about either condition.

    All the best

    Paul

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