I am new to Connect . Ive registered but never commented before...
I was diagnosed with Essential Thrombocytosis (ET) in 2013. My platelets are stable on 500 mg Hydroxy along with 81mg aspirin per day. I am 75 yrs old and want to stay active and upbeat for many years ahead. Over the past year I have noticed an increase in many other symptoms that doctors don't seem to relate to ET. I live in Alaska and ET seems to be a mystery disease.I have never met anyone up here who struggles with it. I have tried connecting with the MNP foundation but was told you can't discuss symptoms there.
My Oncologist/Hematologist is a really nice person but only seems interested in the blood work giving no attention to my physical complaints. Some of it has been downright frightening lately. Last August I was sent to the ER by my primary care doctor because of high blood CRP levels following a horrible HA with vomiting and neck pain so severe I couldn't move my head for several days. The ER did an MRI of my cervical spine and brain and told me to see a neurologist. When I finally got an appointment with the neurologist, after several months, the neurologist did an EMG and reported that to her surprise I have neuropathy. She also did a mini mental test and told me to return for follow up in 3 months and that the mental check showed signs of mild mental decline. I do have trouble remembering names and easily feeling stressed out when under pressure. I also have Raynaud's syndrome, a lot of bruising and discoloration as well as tingling and pressure in my feet, legs, arms and face . I see a physical therapist when struggling with spinal stenosis and cervical pain . All of this, on top of the shut downs from COVID has changed my life immensely over the past year . A year ago my husband and I were doing Crossfit twice a week. 😊 I don't want to be a complainer. I do want to be well educated and am really hoping to make connection with others with ET and learn more about the disease and hopefully help others. Thank you.