Newish to MPN - Looking for recommendation for MPN Specialist to pay for 2nd opinion

[WithMPN2020]

I am Jak2 positive but my BM biopsy didn't confirm whether I have PV or ET. At the first glace my hemotologist assumed ET but now I am anemic but also have a high hemocratic level. It took weeks for her to even look at the results and call, she is just too busy.

I am Canadian and I am looking to pay for a second opinion based on all my bloodwork, I am thinking Mayo Clinic because that is all I know of. Does anyone have any opinions on who is the best for MPN's? Is the Mayo Clinic a good choice?

Thanks in advance

[Tess74]

Hi, I'm uk based but I recently found a specialist through the recommended specialist list on this site, there's a fair few names on the list in Canada which might be worth checking out. Good luck with it all x mpnforum.com/list-hem/

[WithMPN2020 in reply to Tess74]

Thanks, I did find one but based on his reviews it sounds almost the same. I think they are just too busy.

[Yarw]

I’m Canadian as well, based in Toronto. Where are you based? My doctor is MPN specialist.

[WithMPN2020 in reply to Yarw]

I'm in Calgary.

[Yarw in reply to WithMPN2020]

Maybe you me doctor can consult with an MPN specialist if you don’t have any in Calgary.

[WithMPN2020 in reply to Yarw]

thanks

[socrates_8]

Hey there WithMPN2020...

Mayo Clinic would be a great choice because many of the best promoted MPN Specialists work there & also MD Anderson...

Do some searching for Dr Rueben Mesa... He is an excellent choice...

My name is Steve, I'm based in Australia, however, I do loads of research, and he is one of the best around...

Although you do have another response there from 'Yarw' saying that they have a MPN Specialist, might be worth asking about who they are seeing too...

Best wishes

Steve

[WithMPN2020 in reply to socrates_8]

Thanks for your reply

[WithMPN2020 in reply to socrates_8]

thanks Steve

[JP1952]

Hi, I am in UK and in the camp of not knowing if I have ET or PV. Initially diagnosed by a haematologist as ET which was confirmed by a bone marrow biopsy. A year later I managed to get a one off appointment with an MPN specialist who confirmed my bloods showed characteristics of both ET and PV and explained that it is possible for the diseases to overlap, he used a pie chart to show me my results and how they indicated both high platelets and high red blood count and lots of other blood results which I can never remember the names but it did make sense.The problem you get is when logging in your details for forums, questionnaires etc you can only enter one condition.

I agree with the previous replies you've had and would definitely get an appointment with an MPN specialist.

[WithMPN2020 in reply to JP1952]

I really wish there was an MPN's for Dummies book out there sometimes.

[Meeko1982]

I live near the Mayo Clinic and have been going there for my care. I can say they are fast, efficient, and very knowledgeable. Dr Gangat is amazing answers all the questions you can possibly think of. They also have a portal system that you can ask their team questions and expect responses in 24 hours. Good luck on wherever you go!

[WithMPN2020 in reply to Meeko1982]

which Mayo clinic?

[Meeko1982 in reply to WithMPN2020]

Rochester, Minnesota

[Bears23]

I fly once a year to MD ANDERSON in Houston, TX. I did a ton of research and see Dr Verstovek. He is an expert in MPN, and well worth the trip. Best of luck.

[ladyanello in reply to Bears23]

He is my doctor too. Great for a second opinion. Very clear.

[ladyanello in reply to ladyanello]

Also, MD Anderson is an astonishing hospital, feels full of hope. Everyone is warm and helpful (everyone smiles!) and they are very organized for visiting patients.

[WithMPN2020 in reply to ladyanello]

Thanks for this recommendation, I will definitely add him to my list.

[hunter5582]

Check out the link Tess74 provided. You will find some great patient-recommended MPN Specialists there. With the increased use of tele-video medicine, distance may not be such an issue.

I am followed by Dr. Braunstein at the Johns Hopkins Center for the Chronic Myeloproliferative Disorders. He is s great doc. There are other excellent providers there as well. hopkinsmedicine.org/hematol... .

Hope you find someone ASAP so you can get answers.

[blue_reader]

Hi....I live in Ontario, Canada but not in the Toronto area. I see a hematologist where I live, but when I was diagnosed about a year ago, I told my primary health care practitioner that I would like a second opinion. She had no issues with that and arranged for an appointment for me at the MPN clinic at the Princess Margaret Hospital in Toronto. It took about 3 months to get the appointment (this was in the early months of the pandemic). I found they were very thorough at Princess Margaret and and patient about answering my questions. My initial diagnosis through a BMB was ET with the JAK2 mutation (platelets in the 500s); however, it very soon changed to a diagnosis of PV when my RBC and hematocrit started going above the normal range too. All the best with getting a 2nd opinion....I think it's worth it.

[Meatloaf9]

I would vote for the Mayo Clinic. I think they are the #1 rated hospital in the US. Good luck to you wherever you decide to go.

[WithMPN2020 in reply to Meatloaf9]

thanks

[PeachJ]

Please go! I just updated my previous post, with my experience about my visit. It was amazing at Mayo.