Question For Hunter

[Bikelove]

Hi,

This is my first post. I had my second bone marrow biopsy today, hoping to get a specific diagnosis of which MPN I have. I saw a hematologist first, then a second one for a 2nd opinion. They both diagnosed me with ET Jak2.

I have 2 autoimmune diseases, Sjogren’s and Hashimotos also, so I posted about the ET on “Smart Patients” an online support group for autoimmune diseases. One of the patients on that website informed me of this MPN website and I found your very helpful and informative posts. So, first I want to Thank you for all the help provide to everyone on this site. Second, I’m trying to find the list of MPN specialists you posted a while back where I found my current doctor at Weill Cornell in NYC.

I would like to find a different doctor to continue with and tried to find the lists you posted, but I failed to find them.

Would you mind terribly posting them again? This time I will not loose them!

Thank you!

Best,

Susan

[hunter5582]

It sounds like you have a complex case. Consultation with a MPN Specialist is all the more imperative. Here are three different lists of MPN expert docs.

Updated MPN forum list mpnforum.com/tsr-the-list/

PV Reporter pvreporter.com/mpn-speciali...

MPN Education Foundation mpninfo.org/medical-informa...

[Bikelove in reply to hunter5582]

Thank you so much Hunter!!! You’re the best!

[EPguy]

The SP member was likely me. I post as Sjo guy there. You should find MPN Voice to be a reassuring place to comfort your concerns.

[Bikelove in reply to EPguy]

Thank you! I did find MPN voice through you and I appreciate that very much!