Polycythemia jak2 negative

Hi all

After we last chatted I did some research as I was not very happy with the lack of advice my local consultant had been giving me and the fact that he had no answers when i asked him basic questions about my polycythemia.

I have now had an appointment at Kings College after finding Dr Donal McLORNAN through google search. He is fantastic and has taken on my case from my local hospital. He took a load more blood for tests during my visit with him 2 weeks ago and he now wishes to carry out the bone marrow test which I know is not going to be very nice.

He was really good and I found out more in that one visit than i have done in the last 6 years since I was diagnosed. I managed to get a referral through my normal GP too so did not have to go private as I thought i may have to. He specialises in Polycythemia so I am very pleased that he has offered to take me as a patient.

Thanks for all your tips and help as well as all the continuous support on this forum.

Cheers

Noel

4 Replies

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  • Congratulations on pushing for an appointment with your specialist in Polycymeria. I too am JAK 2 negative and have raised platlets. I had a bone marrow aspiration yesterday and after watching you-tube can honestly say it wasn't as bad or painful as expected but isn't particularly pleasant either! It has been sore since the pain relief wore off so you will need some paracetamol in! Good Luck in your journey.

  • Excellent news.

  • Well done Noel, it will make a huge difference having a consultant who knows what he's talking about. Mel x

  • Good for you. I'm a Noelle!!!!!!

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