request a second opinion from a different hematologist. You don't have to continue with a doctor that doesn't work with you.

Dear PinkFlamingo,

Wow!! Sorry for what you are going through. I had the JAK2 blood work done because I kept having platelets in the 600 level. I was not feeling sick, but I knew with that level, something was not right. My very astute nurse practitioner was the person to look into this and request the JAK2 test. Bam! She found the culprit and immediately sent me to an Oncologist/Hematologist who agreed with her findings. He put me on Hydroxyurea and a low dose aspirin, to offset the possibility of blood clots and stokes, and ordered a bone marrow test two weeks later, which confirmed Essential Thrombocythemia. Since being on the medication, and by the time I had the bone marrow test, my platelet count went down to the normal range. Unfortunately I had a reaction of getting multiple mouth sores, both fever blisters on my lips, and canker sores within my mouth. The Hematologist took me off the Hydroxyurea for 5 days, then started me back at 4 times a week. That has worked beautifully for me. My understanding of blood cancers is that it is an incredibly frustrating situation to find the balance and proper control. I fervently hope you continue to pursue this avenue you are on, and eventually gain that balance. It sounds as if you definitely have additional issues and like you, I had felt so dismissed by my Primary care physician....because of my age (77) - he said it was an age issue. That nurse practitioner was my saving grace. She investigated multiple things and ordered multiple blood tests, and after ordering the JAK2 test, we finally got the answer. I am feeling much better since that time during this past fall. I am new to this diagnosis and I am so thankful for the nurse practitioner and her interest in finding an answer. I go to her almost exclusively now, except for the required 1 time a year required by Medicare, when I see my Primary Care Physician. I am saying all this to encourage you to continue your pursuit of finding answers. It took me two years. Praying for all your questions and issues to be resolved.

Ginger

Yes, I meant to get a second opinion from another more prominent center. I also agree to have the bone marrow biopsy which will help diagnose your exact condition and help to devise a treatment plan for you. Don’t accept your doctor’s dismissive answers. Keep asking questions. Wishing the best for you.