[thewanderer1983]

I was diagnosed with a rare blood disease called Essential Thrombocythemia (ET) which is part of a group of diseases called myeloproliferative neoplasms. This happened about three years ago. Recently, I decided to get a second opinion and my new specialist changed my diagnosis from ET to Polycythemia Vera (PV). She also highly recommended I quickly go and give blood to lower my haematocrit levels as it put me at a much higher risk of a blood clot. This is standard practice for people with PV but not people with ET. I decided to put the details into google AI in the same way that the original specialist used to diagnose me. Google AI predicted I very likely had PV instead of ET. I also asked Google AI how one could misdiagnose my condition with ET instead of PV and google correctly explained how. My specialist had used my high platelet count and blood test that came back with a JAK2 mutation then after a bone marrow biopsy to incorrectly diagnose me with ET. My high hemoglobin levels should of been checked by my first specialist as an indication of PV not ET. Only the second specialist picked up on this. Google AI took five seconds, and is free. The specialists costs $$$ and took weeks.

[throwaway762]

Interesting. I am also diagnosed with ET (from platelet counts, pathology report noting abnormal platelet morphology, and JAK2 mutation from a marrow biopsy). What made you seek a second opinion?

[thewanderer1983]

My original specialist wasn't very engaged with my condition. I was getting the same speech every six month visit. On my last meeting she incorrectly stated a condition I wasn't having with bleeding. My wife had a thyroid issue a number of years ago including cancer growth on it. Her first specialist was using older techniques for her treatment. We ended up going to another specialist who's focus of research was her condition. It was worlds better. Given that experience I decided to find another specialist who focused on my condition.

The first specialist ( hematologist) was referred from local GP. She is a a hematologist, but she wasn't focused on MPNs.

I recommend joining your local MPN alliance to keep up with what's going on in this field. I also recommend finding a specialist with a focus on MPNs. Looks at their papers or listed focus.