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.


7 Replies

  • 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.


  • 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.


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

You may also like...