I have recently been diagnosed with polycythemia so far tests have confirmed I am JAK 2 negative, at 36 chances of being relitive or true?

[Crimiknell]

At 36 as a smoker who likes a drink what is likelihood of being relitive or true condition, may not be answer but feeling stressed and confused and tired, aching, dizzy what should I do? Thanks

[jane13]

Feeling for you. You could try Macmillan cancer (sorry about that word) - you can phone them for a chat - see website - they will get back to you with specialist questions

[Crimiknell in reply to jane13]

Thank you for reply I will look at this

[revfee]

Hi

sorry you are feeling so confused and upset. I was also diagnosed young (at 29) but that was more than 25 years ago. So even if it is PRV don't panic, its possible to live a long and full life. Good luck.

[Crimiknell in reply to revfee]

Thanks

[Davide1984 in reply to revfee]

Hi Revfee!

You have been diagnosed 25 years ago ? PV? When you was 29?

[revfee in reply to Davide1984]

Yes, in fact it was more than 28 years ago. I had Busulphan at first and vensections but quickly went on to Hydroxycarbamide and been on it most of the time since. I work fulltime and live an active life, I try not to think about it too much!

At least now there is lots more known about it and Forums and lists like this one.

[skodaguy]

Polycythaemia has many causes. You say you like a drink and smoke. What is the state of your lungs as the body responds to lung damage by increasing haemoglobin to increase oxygen carring potential. also if you like a drink then it is possible you are dehydrated in a morning when bloods are commonly done falsely increasing haemoglobin levels. Easily solved by having a lot of water before having bloods done. I would presume these have been done if someone has done a Jak2 on you.

Hope you haven't got PV but if you have don't forget to keep living.

[Crimiknell in reply to skodaguy]

Thanks I have had several tests now morning and afternoons the jak2 was negative a relief here but now waiting to find out about plasma levels which will indicate if dehydration is part of. It thanks for your reply.

[aberbrothock]

Hello Crimiknell, Sorry I cant help you as I don't know anything about your condition or what 'relitive' means. You may need to ask your GP or consultant more questions to alleviate your concerns.

[Crimiknell in reply to aberbrothock]

Thanks for all the replies I need to ask more q's with my GP

[Aime]

Hi, I have PV and am Jak2 negative. I went through tons of tests to rule out causes for secondary polycythemia including nasty tumours, etc but nothing was found. I had blood mass cell test in the nuclear med dept at the hospital and this proved I had too many red blood cells in volume in relation to the rest of the make up of the blood. I am being treated currently by venesections only apart from anti-histamines for itch. I don't drink hardly ever and don't smoke so unsure why I have got PV. I am keeping relatively healthy at the moment despite some fatigue and itch and ongoing joint problems. There are people are you see from the answers above that have had PV for years and are still here. This forum is a blessing for support. Kind regards Aime

[Crimiknell in reply to Aime]

Hi Amie, thanks for your reply, I do smoke and drink but need to stop really as it is thought this is agrovating my condition, still having those tests to confirm or not the exact cause. But I am taking confidence from the posts received that normal life is possible with this Condition, Thanks and all the best with your situation this forum is very helpful