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@amybh

I also have ET MPN with the TET2 mutation. I find that if I’m sitting or standing for too long I have what I call “start up pain” my joints become very stiff and it takes a minute or so of moving around to lessen the pain and not look like I am 102 instead of 52. I get the numbness and tingling in my hands, feet and legs. My hands and feet also get ice cold & I bruise easily. I was just diagnosed 2 months ago after 2 years of doctoring and testing to find the cause of my all over joint pain. My oncologist says he doesn’t know what is causing those symptoms but working as a CMA for a general surgery dept at a small hospital, these symptoms make my day very difficult. The fatigue is horrendous and I struggle to accomplish much of anything after work when I get home. All my doctor suggests is baby aspirin and Aleve. I take no other meds at all (other than for my blood pressure).

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Replies to "I also have ET MPN with the TET2 mutation. I find that if I’m sitting or..."

Is TET2 a new driver mutation? All I have heard of is JAK2, CALR, and MPL. I have ET-CALR. Ditto on the fatigue, though hydroxyurea helped with that. Hands and feet are often burning hot or ice cold.

However, I am 68 and also have heart valve issues, so it's hard to know the root cause of it all.