Yes my Mpn specialist got my platelets down from 1020 on march 14 to 387 as of June 19

I completely understand that. The ones I found were all 4+ hours away from where I live. Thankfully my insurance will cover them but the drive isn't fun. But, I think it will be worth it.

I went to a Specialist for the first time since I've been diagnosed this past week and it was well worth it. Having someone able to completely understand and explain what was happening in my body made me feel so much better and less like a crazy person. My past Doctor did not seem to understand what was happening and only went by the numbers and what was considered the traditional way to treat PV (hydroxyurea & bloodthinners). They didn't listen to me when I complained that my symptoms were still there and happening all the time. I was told my headaches weren't really happening and by bone pain was probably a pinched nerve. After meeting with the specialist they explained to me that the Doctor I was seeing was getting my numbers wrong. It made me frustrated but also excited that I could possibly start getting better.

My first diagnosis was Essential Thrombocytopenia based on the results of a lab test that indicated I had a very high platelet count. I asked the Hematologist at the VA Hospital when she was going to do a bone marrow procedure. She replied, “you don’t need a bone marrow procedure because I know exactly what’s wrong with you and I know how to treat you.” I knew better because I was a research scientist for 33 years. I called Sloan Cancer Center and they did the bone marrow procedure and a molecular panel. My final diagnosis was MDS/MPN-RS-T which is an extremely rare overlap disease. Recently, the MPN component mutated to Polycythemia Vera which requires weekly labs and vampire treatments. My point here is let science work for you. My molecular panel disclosed five gene mutation and that verified what was happening at the molecular level in my bone marrow.

i can not find any drawback in using a specialist , knowledge about mpd is a big benefit