Polycythemia

[Kwebb]

Is it common that it takes a while to diagnose polycythemia related health issues ?

[Loubprv Volunteer]

hi - depends what you call a while! It took around 3 weeks for the blood test from my gp to suggest that I had PV, then further tests by the hospital, so around 6 weeks in all for me.

Louise

[Kwebb in reply to Loubprv]

This has been ongoing for five months now. Keep seeing haemotologists and waiting for a scan.

[Mazcd Partner MPNVoice]

What issues are you having that you feel are related to your PV? Maz

[Kwebb in reply to Mazcd]

Morning,

I'm having headaches and dizziness. Sometimes blurred vision but not often. Itching but medicated from that. Small nosebleeds but often. Ridiculous fatigue . Lost interest in eating , I've lost three stone in two months. I also have gout. My haemoglobin has been high for for the last 1omths. I'm just waiting for a scan but the chemicals that they use have to be sourced from abroad do got to wait. Thank you

[Mazcd Partner MPNVoice in reply to Kwebb]

hello, have you been seen by a haematologist? Maz

[Kwebb in reply to Mazcd]

I have seen an haemotologist three times upto now. I have congenital adrenal hyperplasia too. I've had it for 30 years.

[Ann16]

I went to 6 or 7 doctors before I was sent to an oncologist that diagnosed mine. To make sure he had to do a bone marrow biopsy. Good luck, hope you find out soon. Ann16

[Kwebb in reply to Ann16]

Hi, I'm still being seen by a haemotologist yet.

[Kwebb in reply to Ann16]

Did you see several haematologists before seeing oncologist?

[Ann16 in reply to Kwebb]

No I only saw one to be diagnosed. The other doctors didn’t have a clue what was wrong with me so I asked to see a hematologist and was finally sent to one. He saw from my blood work but made sure it was PV with the bone marrow biopsy.

[Kwebb in reply to Ann16]

I have seen a haemotologist twice and have to again 7th Feb. I have to have a nuclear red blood cell mass scan.

[Hidden]

hi i was diagnosed pretty quick my doctor sent me to see the oncologist he sent me next day to have a special blood test three days later I got result had to start venuscation straight away other test followed I was diagnosed with polycythanemia ruby Vera primary james

[clevemic]

I would search for a doctor who specializes in MPNs. My general practitioner suspected PV, sent me to an oncologist, who confirmed it with a bone marrow biopsy, and I began treatment all within 2 weeks. The symptoms you mentioned definitely fit those of an MPN. Wishing you well.

[Kwebb in reply to clevemic]

I feel like I need to do that. The last doctor I saw said it wasn't looking like it was linked to bone marrow but I'm not sure 🤔. I know the symptoms are on my mind. Thank you.