MPN Specialist

I was just wondering about the benefits of seeing an MPN Specialist and how I would go about doing that? I believe that there isn't many practicing MPN Specialists. I was only diagnosed by the haematologist earlier this year with ET (jak2+) and put on HU because of my age. Since then, I've had three further appointments all with the Nurse Practitioner who I must say is both professional and lovely. However, I'm beginning to wonder if I will ever see the haematologist again?

Have any other people requested to see an MPN Specialist, and if so how did you start the process.

Mary

9 Replies

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  • I'm in Michigan and would also like to see a specialist.

  • Hi Osidge, my nearest city would be Sheffield.

  • Thanks for that, I will probably wait for now and see how things progress at my local hospital. It's nice to know that there is a MPN Specialist quite close to where I live though should I feel that is necessary in the future. I am also quite familiar with the Royal Hallamshire as my husband attends as an out patient.

    Thanks again, it is much appreciated.

    Mary

  • Hello everyone.

    I would also like to know how I could go about this.

    I'm based in Bristol and my doctor has recently written to my haematologist stating I am happy to take a more aggresive aprroach with treatment due to how badly I have been suffering with PV symptoms.

    I'm unsure how you would locate a MPN specialist so any advice would be great.

  • Seeing an expert is critical. When I was dx, my gp's partner happened to be a hem/ onc professor at Yale for over 50 years. He told me it was critical to see an expert for the following reasons:

    1- mpns are rare. Even a good hem/once will probably see only 1 maybe 2 mpn patients on their entire career. I was his second in almost 50 years.

    2- these diseases can be especially hard to tell apart (meaning et vs pv etc) in the early stages. So you want someone who sees this stuff all the time- your life could depend on it.

    3- havibg an expert confirm the dx and define the plan if cate is the first goal. Then you can have a local doc manage you. The expert can act as a resource when your local doc needs help. At some point, your local doc will need help.

    4- his last bit of advice- get educated b/c you are gonna need it.

    Bottom line- getting an expert involved will help you get better quality of life and as much life as possible.

    Where are you located? There are support boards in Facebook w lists of experts all over the globe.

  • Thanks cdseiter, this was very informative and kind of confirms my own reasons for thinking about seeing an MPN Specialist. I can relate especially to the no2 you made point as well.

    Mary

  • Sorry, that should have read, 'the no2 point you made as well'🤔

  • I was just thinking the same and came across your post, PV jak2+ I'm under the Hallamshire haematology dept, the last few visits have been with a nurse who is lovely but due to other health issues now feel I may benefit from an MPN specialist

  • Hi littled, I believe that there is an MPN Specialist (Professor John Reilly) already practicing at the Royal Hallamshire Hospital. How easy it is to get to see him though I don't know. I attend Doncaster Royal Infirmary - although both hospitals are equal distance from where I live.

    I have had five hospital appointments since my ET diagnosis, the first one with the haematoligist and all the others were with the specialist nurse. The nurse is lovely and good at her job - but I feel that I should be seeing the haematologist at least once a year.! I think if I become more symptomatic I would definitely like to see an MPN Specialist.

    Good Luck

    Mary x

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