Thank you!

After reading on this forum the importance of working with an MPN specialist and accessing the database provided I have changed my provider. It makes a world of difference! My new doctor confirmed the polycythemia diagnosis via bone marrow biopsy but also found No JAK2 mutation. The hydroxyurea that sent me to ER is not recommended (yay!). We will be searching for a potential secondary cause of the high RBC while continuing to monitor and have phlebotomy to control the numbers.

Thank you so much for helping me find a doctor I know I can trust!

[hunter5582]

That is wonderful news! Congratulations on your successful advocacy. Please do let us know how you get on and what you learn.

[gilded in reply to hunter5582]

Dear Hunter! In the Autumn, I’ll be visiting a friend who lives in Bethesda, Maryland . I think I’ll take the opportunity to consult a MPN specialist in the general vicinity although I hasten to add I’m fully confident with my Consultant. Is there anyone in particular you’d recommend? You may send me a private message , if thought appropriate. Thanks. Regards.

[hunter5582 in reply to gilded]

Johns Hopkins is the closest place to find MPN expert docs if you are in Bethesda. Three of the primary MPN Specialists at Johns Hopkins have left unfortunately. (Including 2 docs I used to see) It is harder to get an appointment with a MPN-expert doc these days. Hopefully, they will rebuild the MPN Clinic with more docs. I am currently seeing Dr. Tania Jain, who did not come up as a MPN Specialist. She was mentored by Dr. Ruben Mesa and does have good expertise. There are other docs with MPN expertise at Johns Hopkins. If anyone is interested in seeking a second opinion there, suggest reviewing the docs who are available. hopkinsmedicine.org/kimmel_...

If you decide to seek a consult, be very specific about who you want to see when you speak to the medical concierge when you call in. It will help to have several options. Be clear you are seeking consultation with a MPN Specialist, not just a regular hematologist.

Hope you enjoy your trip to Bethesda.

[gilded in reply to hunter5582]

Thanks very much Hunter. Most enlightening.

[Confusingdisease]

Great News! Hopefully you can find a reason for you high RBC count.