Polycythemia Jak gene negative

I was diagnosed with Polycythemia about 6 weeks ago after routine blood tests to explain my leg pains,fuzzy heads,frequent toilet visits,tingling of leg feet and finger tips. After my tests for Jak2 gene came back negative my Dr ordered X-rays and CT scan and they found a large growth in my pelvic area. I had a total abdominal hysterectomy 2 weeks ago and am recovering from the operation with no pain from the abdomen but am feeling so miserable because of the pains in my legs. I walk like an old lady ( I'm 58) and my legs ache and tingle. Both my Gynaecologist and my Hematologist thought that once the growth was removed I would no have Polycythemia. I don't see my Doctors for another week but I am feeling miserable with the leg pains mainly because I just want to feel well again. I was so positive that all these symptons would disappear once I had had my surgery.Has anyone had a similar experience??

3 Replies

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  • Hi, I haven't experienced what you are going through but a friend who has awful trouble walking due to pain in legs ( not related to MPN) is having a Doppler scan apparently this indicates how good or bad the blood flow in the legs is. Might be worth investigating? Good luck, I hope you feel much better soon. Best wishes, Frances.

  • Hi there

    Sorry to hear you are having pains in your legs. You sound amazing only just 2 weeks after major surgery. I hope you can find a reason and a way of easing the leg pain.

    Warm wishes

    Sheila

  • hello Annie, I am sorry to hear this, it does sound miserable for you and can understand that you want to feel well again, hopefully these pains will go or lessen, and that you get some answers in the next few weeks regarding whether or not you do have PV. Let us know how you get on, best wishes, Maz

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