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I was diagnosed with ET and positive JAK2 in August 2023. I am currently on 500mg of Hydroxyurea once a day and two 500mg pills a day on M-W-F; also on low dose aspirin. I have been having very severe pain in my right lower leg (around the shin area) for almost a year. There is no pain in my other leg. Have had every test available with no explanation. The pain is so severe it limits what I can do. Does anyone else with ET have any pain like this?
My Dr. Only requests that I go to phelbotomy for removal of blood. And yhat amazingly does make me have less pain etc.
That sounds exactly like the pain I am having around my right shin area. I have burning and bone pain in that area. I am currently in the process of changing hematologists. I am hopeful that my new physician will be able to help me with this extremely debilitating pain.
I have the same and it’s agony In my left leg - burning pain and bone pain around knee, shin, but also hip and pelvis
I have phantom pains and I find fighting through, when possible, is better than not… Movement in a pool is helpful, too
Carol,
I do get aches in my knees and lower legs. However, I do not get what you describe. What does your hematologist say?
Best wishes, Eileen
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