Polycythaemia

[Kwebb]

Hi. I am currently being investigated with polycycthemia. The Jax test was negative but still have the symptoms. I am now waiting for a scan to explore my red blood cells , an RBC Nuclear scan ? My ultrasounds were all fine. Any advice ?

[Aime]

Hi Kwebb, welcome to this forum. Best advice I can give is eat healthy, drink plenty of water, be assertive at haem appointments and get all the answers you need, rest when you have to and exercise when you can. Above all, keep in touch with this forum as there are so many nice people on it who will not only support you but they truly understand what you are going through. Have a look on the MPN Voice website- you can trust the information on it, like this forum it is closely monitored.

Kindest regards

Aime x😺😺

[Kwebb in reply to Aime]

Thank you for you advice and kind words. I feel like being passed from pillars to post to be honest. Haemoglobin been high for at least twelve months. Thank you.

[Aime in reply to Kwebb]

Hi, no problem we all help one another. You will feel like that to begin with. I used to compare to a merry go round you couldn’t get off. Once you have had all your tests and settle into a routine and gain more knowledge of your condition, you will feel you have got some control back and not vice versa.

Just take it a step at a time. Kindest regards Aime x😺😺

[Kwebb]

Thank you so much , your kind words help. I just feel like waiting for diagnosis and just want an answer. Xx

[James53]

Me too.

Same test results and awaiting RBC test.

My Red blood count is 184 and PCV 55. Haematology app again on 30th Jan!!

The joys eh

[Kwebb in reply to James53]

Have they mentioned to you what it could be ?

[James53 in reply to Kwebb]

Yes, currently thinking is idiopathic polycythaemia. Jak2 negative, scan on kidney clear so ruled out kidney tumour.

Further tests including RBC nuclear test.

Haematologist wants Nuclear test results before starting venesection. If RBC and PCV are up he may start earlier

[Kwebb in reply to James53]

They don't tell me much. They said not leading to bone marrow but doing the RBC scan. They said no venesection at moment.

[James53 in reply to Kwebb]

It is frustrating. Obviously the Consultants don’t want to say too much until they get all the tests and can form a view. I just read up as much as I could and keep asking them questions lol. Hope you get on good. Best wishes