I was misdiagnosed at the VA Hospital on Long Island with ET in early 2018. I asked the Hematologist when she would perform a bone marrow procedure. She said, “no need for a bone marrow procedure because I know exactly what’s wrong with you and I know exactly how to treat ET.” Her problem was I’m a MIT Researcher and I know you cannot diagnose any type of blood cancer without a bone marrow procedure and a molecular panel or genetics test. So I contacted Sloan and had the bone marrow procedure, molecular panel and a genetics test done. My final diagnosis in 1998 was MDS/MPN-RS-T. Sloan has seven cases of MDS/MPN/RS-T. Most hospitals have no cases because this sucker is extremely rare. It appears my blood disorder is mutating because my immature white blood count is running at 9.5% of my white cell count. So not looking forward to a stem cell transplant. Hopefully, that will not happen. I have the JAK2 mutation which is common in MDS and MPN disorders. I also have the SFB31 and SRSF2 splicing gene mutations. I understand it’s rare to have both the SFB31 and SRSF2 mutations.

My platelet count has been normal for the last 4 years with my current dosage of Hydrea. My Oncologist at Sloan thinks I’ll need another bone marrow procedure in the near future because my immature white cell count is elevated but he doesn’t appear to be overly concerned YET. And I’m not worrying about it until he says I have something to worry about.

Hope your blood disorder stabilizes.