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This Nov I I Was Diagnosed W/ ET And Have Read That ET Can Be Misdiagnosed And Could Be Early/prefibrotic Myelofibrosis (MF), How Do I Know?

A myMPNteam Member asked a question 💭
Saint Louis, MO
December 27, 2023
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A myMPNteam Member

Why the contradictions from doctors? Maybe they just don't know. But "Doctor G-d" doesn't admit he is wrong or doesn't know. My doctor skipped second grade. That is where they teach kids that it is ok to say they don't know.

January 23
A myMPNteam Member

Same here

December 30, 2023
A myMPNteam Member

Exactly... Earlier my doc called it ET. Later on other hematologist asked me for sample review of biopsy. And now he is saying I have grade 2 PMF. Don't know what's going on...

December 29, 2023
A myMPNteam Member

Dear Renee,

I also have ET and I asked the same question.
The only way to distinguish between ET and PMF is, according to my hematologist, a bone marrow biopsy.
There are some studies on how to distinguish between the two, but it seems to not be straightforward:
https://www.sciencedirect.com/science/article/a...

I also found this study that tries to distinguish between the two conditions via different criteria:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC58...

Many hugs of support,
Tatiana

December 27, 2023
A myMPNteam Member

I may be wrong, but I think that a bone marrow biopsy is the only means to determine with 100% certainty that you have signs of fibrosis, early or otherwise, in your bone marrow.

December 27, 2023

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