Recently diagnosed JAK2 negative PRV

[cwayman11]

Hi..I was diagnosed in December with jak2 negative PRV and showed no molecular markers on the bone marrow biopsy/aspiration. Is there anyone else like me? I'm having venesections every 8 weeks and last time had mild vertigo with extra fatigue and this time extra fatigue and cloudy head. Does anyone else experience these symptoms? Thank you.

[Aime]

Hi cywayman11, I have PV jak2 negative and can identify with all your symptoms. I'm just waiting for a venesection at the moment and my arms and legs feel like lead with fatigue, light headed, my body thermostat is at boiling point during the morning or when I stand in queues!

With PV our counts are kept to being close to or actually anaemia which causes the fatigue, etc. Try and rest when your body tells you to, drink loads of fluid, eat healthy, but have treats too - you deserve them. I find pasta, bars with nuts in them and proper meals help the fatigue so does exercise (gentle) if you can manage it - some days I can't.

Have a look on the MPN Voice website - you will get trustworthy information there and also keep posting on this forum. The lovely people on it have been there for me when I needed them!

Kindest regards Aime x😺😺

[cwayman11 in reply to Aime]

Thanks Aime x

[Litefootes]

I was diagnosed w PV jak2 neg Sept 2004 and I still have those symptoms though not nearly like I used to. Bone ache is one of the more intense discomforts of pv, for me. Also have burning hands & feet which is one of my personal 'signs' that I need a phlebotomy. The phlebotomies kept me so very drained (ha) that I couldn't hardly drive home and usually took me 3 days to feel almost normal, but tired. Luckily, as time goes by those very symptoms have lessened. Unfortunately, as time goes by I am now 60 and its beginning to feel like the brain fog and fatigue are coming back.. Trying to hold out and not see my hematologist until my appointment in April. Read all you can on this site, and you can manage a good life w PV. It helps knowing others who understand your condition! Good luck!!

[cwayman11 in reply to Litefootes]

Thanks so much and hope you can hold out until April.