My Bone Marrow Biopsy result states that the morphologic findings are "somewhat suspicious" of a chronic MPN.

[Jschwab]

Anyone out there also had that on their BMB? "Somewhat suspicious" is less than convincing. Is this typical that they state it like this?

[WileyFrench]

My results said they were “consistent with” an MPN. Gotta love “medical speak”.

[Jschwab in reply to WileyFrench]

I wish they would use a checklist like the one from WHO- mpnconnect.com/pdf/who-diag...

Thanks for weighing in!

[Osteomyelio]

Please consider have the biopsy reviewed by another doctor or clinic. Second opinions are critical and you can ask for one

[Jschwab in reply to Osteomyelio]

I actually am having it reviews today by a second party. That's why I have the records and can finally read through what they say. My whole life has changed since this diagnosis in February, but the doctor has been so vague. Today I am going to a place where they know much more about MPNs. Thankfully!

[Wyebird in reply to Jschwab]

Hope all goes or has gone well

[Osteomyelio]

Recommend you have it reviewed for a second opinion

[ChelseaF]

Do you have a mutation? I don’t and so I think they are a little cautious about the language they use. Mine said highly suspicious for MPN, specifically ET. But because of the secondary causes we’ve ruled out, the length of time my counts have been high, and some markers they found in the biopsy, they were able to make the diagnosis. It took me a few years to get there.

[Jschwab]

That's super helpful ChelseaF....

[hunter5582]

Hard to know what it means out of context, but someth9ng I learned from my hemo-docs is that the quality of BMBs varies widely and you cannot always count on the results based on who does it. Lots of docs, even hematologists, don't know much about MPNs. If the next provider does not work out as well as you hope, here is a list of patient-recommended docs - mpnforum.com/list-hem/ .

[Jschwab in reply to hunter5582]

the 2nd BMB read I got today, more specificly confirmed ET. However both dr.'s said the same things in regard to the disease itself. not much more than what you google. So thank you for this list!

[hunter5582]

Oh brother! Please go find a knowledgeable doc who will actually talk to you. There is some really good information out there, but Dr. Google can scare the heck out of you with a lot of information that is not always accurate. My approach has been to start with reliable patient-education sites (like this one) (MPN Research Foundation)(MPN Connect)(MPN Forum)(American Society of Hematology). One you have a foundation, then you can look to the professional forums and journals for more detailed understanding. Expect to do lots of secondary reading unless you are a medically trained professional. All the best n this journey. Though MPNs are rare disorders, you have plenty of others who can share experience and support on forums like this, so you are not alone. FYI - I was diagnosed with ET over 30 years ago. My MPN progressed to PV about 6 years ago. I am still alive and kicking!. Don't kick as hard or fast as I used to, but still kicking anyway. Hang in there.

[Jschwab in reply to hunter5582]

Hunter5582- that's incredible! Stories like yours get me through!!! Thank you x