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@cgpak

Hi lefsequeen, I am new to this group also. Hope I'm doing this correctly…..
I was very encouraged to read your post as I also have ET and have searched for others to connect with.
I sent a lengthy message yesterday explaining my situation but haven't seen it on the board yet.
I was diagnosed in 2013 at age 68 and had a bone marrow biopsy in 2017. The bone marrow biopsy confirmed a JAK2 V617F gene mutation with easy bruising . I take 500mg HU along with 81mg asprin daily. This keeps my platelet count in check. Over the past year I have struggled with many increased physical symptoms which have slowed me down considerably and I am searching for answers as to the correlation of symptoms to the ET and the HU.
I do all I can to eat well , take my vitamins and live a natural healthy life style . My symptoms include worsening neuropathy with varying levels of tingling, tightening, and numbness in my feet, legs, hands , face and head. These come and go… I bruise easily and have Raynaud's syndrome with intolerance to cold in my hands. I also have spinal stenosis in my lumbar and cervical spine , In August of last year I had three horrific headaches during a two week period, with neck pain so severe I could not more my head . The MRI of my brain showed evidence of blood from a previous possible thrombosis . I saw a neurologist along with my oncologist and neither seemed concerned about the findings. What caused the headaches and neck pain is a mystery and I haven't had them since, although I do experience periodic pressure in my head and eyes. Most people would not know I struggle with any of these issues and I stay as active and upbeat as possible. In general life is very good and I am thankful and blessed. My primary care physician tells my husband and me that of all of his patients my husband and I are two of the healthiest! We are 82 and 75 respectively….haha.

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Replies to "Hi lefsequeen, I am new to this group also. Hope I'm doing this correctly..... I was..."

It is also wonderful to hear from you! I have begun to wonder what life will be like for me in the next decade, thus I decided to ask people on this site what experiences they've had. Because I was diagnosed in my late 30s, I now think about the possibility of increasing symptoms from the disease. I have been very blessed to not have significant issues with the disease or HU thus far. But I have had severe migraines since I was in my 20s. And just after I turned 54, I suffered a nearly fatal, sudden brain aneurysm hemorrhage and subsequent stroke. I have asked physicians since that time if it was related to ET, but they claim not. So, most of my ongoing issues are actually from the aneurysm/stroke and not from ET or HU (at least I don't think so!) I am encouraged that you are 75 and doing so well, despite your other issues. Carry on! Life is a gift not to be taken for granted, as we daily learn!