About 4 months ago I had some disturbing symptoms like headaches, vertigo, back pain, I still have left shoulder pain that radiates down my arm, itchy skin, and fatigue. I went to the doctor because I felt like trash and asked for a blood test because I thought it was my thyroid or change of life. I am 42.
But it showed that I had elevated platelets 681K, I had a repeat test 670K , then they sent everything out for genetic testing and so three months ago I was dx with ET with Calreticulin mutation. When I met with the hematologist I told him about all of this and he told me that those symptoms are not related to the type of mutation that I have because my platelets are not active. I am not challenging this notion or the non-treatment plan he gave me. ALL I want to know if there are others with the CALR mutation that have constitutional symptoms?
They sent me to a neurologist for the arm weakness because they thought it might be myastenia gavis ( I could have told them my floppy eyelids run in my family had they asked) who now wants to diagnose me with a functional medical disorder because I have a weird shoulder pain that does not fit her algorithms of pain and that I said I had stress because when I first started having vertigo symptoms I thought it was stress. I have never been more embarrassed and ashamed to have talked about this shoulder pain in my life. Please tell me I am not crazy.