Erythrocytosis or PV?

[Aime]

Hi Guys, sorry I've not been posting much as I've been running here and there trying to sort out my ill health retirement.

An interesting comment from my GP who has said in some of the correspondence from my haems, I may have pure erythrocytosis and not PV. I have scrolled the net (as you do) and the NHS site says it's the same thing but others don't. Maz can you please ask advice from Professor Harrison as to who is right, what difference it makes to treatment, prognosis, etc as I know what she says is trustworthy. If different, is it still classed as a neoplasm and if so, can it turn malignant?

Many thanks Maz, I just feel I don't want to cope with something else new at the moment as having a hard time with my osteoarthritis. Sorry I shouldn't moan because I know there are many others in this forum a lot worse off than me!!

Kind regards Aime xx😺😺

[linds]

Dear Aime,

I have read your progress over the last few years and noticed how good your advice is to people and am so sorry you are having such a bad time with your osteoarthritis - just wanted you to know. I do hope things get easier for you and you have every right to moan if you feel like it because we understand. All the very best.

Linda x

[Aime in reply to linds]

Hi Linda

Thank you so much. I'm feeling a bit more positive today. I have seen a report which my GP is sending to occupational health at work and he is backing my request for ill health retirement which makes me feel better as sometimes I do wonder if I'm being a wimp, considering what other people are coping with so well!

Hope you are as well as you can be. Thank you again, kind regards Aime xx😺😺

[Mazcd Partner MPNVoice]

Hi Aime, reply from Prof Harrison is: Ok so hard to understand what is meant by pure erythrocytosis it may be the same as PV and it may be something different. Strictly speaking it isn’t a diagnostic term...She should have the conversation with her haem team. Hope this helps. Maz x

[Aime in reply to Mazcd]

Many thanks Maz and Professor Harrison. I will ask my haem team when I see them in August as I read somewhere ( I know I shouldn't troll the net) that some forms of erythrocytosis can be hereditary and that's what was bothering me for the sake of my kids. Kind regards Aime xx😺😺