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Still waiting for JAK2 very frustrated!

Posted , 5 users are following.

julia15874
julia15874

Hi all its Julua again, extremely frustrated! Still waiting for JAK2 it's been three weeks, my specialist haemotololist rang me Monday and was sure they would arrive this week, my last blood test which was taken at the same time was still high of red blood cells, haemoglobin and haemocrit, I'm so fed up, why does this test take so long! My specialist talked about venesections and he's set them in place as he's 90% sure it's positive, however did say there's that 10%, if it's negitive it's whole lot of new tests, waiting! Waiting and waiting! 😬😩 xx

0 likes, 6 replies

6 Replies

  • keith28441
    keith28441 julia15874

    Posted

    Hi Julia

    I can understand your frustration, mine took over 5 weeks. Your bloods would have been sent to a specialist laboratory and my understanding is that JAK2 testing is quite complex, hence the time it takes for the results to come back. If your tests come back negative, your Haematologist will probably want to then do what is known as a bone marrow extraction to further test you for PV. He/she may not, but mine said he would, had my JAK2 come back negative. As it happened, mine came back positive so no need for further tests. At least your Haematologist has decided not to wait and treat your symptoms in the meantime. Venesection is more or less like giving blood so it’s a safe procedure and will help start the process of reducing your red blood cell count, haematocrit and haemoglobin levels.  95% of people with primary PV are JAK2 positive so if your Haematologist believes you do have PV, then there is a very good chance it will come back positive although I am no Doctor.

    Hope you get the results soon. I have to say in a roundabout sort of way, I was kind of relieved when I was finally diagnosed as I had felt under the weather for a long time. Once I was diagnosed, better understood my condition and knowing that it could be managed with treatment I found it was a weight off my shoulders.

    You will get there in the end Julia.

    Take care

    Keith

    • julia15874
      julia15874 keith28441

      Posted

      Thank you Kieth, sorry for ranting, like you I've not felt good for two years and I've now a tender swelling on my wrist that I'm sure is related, like you I just want a diagnosis so I can move forward with the treatment etc, I have to be patient xx

  • clem19079
    clem19079 julia15874

    Posted

    Why hasn't your doctor phoned the lab directly, thats what mine does. Surely you are getting treatment on the basis of what they already know.

    • julia15874
      julia15874 clem19079

      Posted

      Thank you Clem, I'm not sure, he did say he was going to ring them this week but maybe they couldn't give him a result if he did, I have to be patient, however hard I've now a swelling on my left wrist which I think is related to my bloods been high, my body is telling me something that's for sure xx

    • clem19079
      clem19079 julia15874

      Posted

      Well sll you can do is contact the hospital and tell them how your feeling and keep at your doctor. They will get results just to get you off their backs
  • ellen68007
    ellen68007 julia15874

    Posted

    HI Julia! Keith is bang on! It takes time to get to the bottom od this blood disorder. I am Canadian and what I have learned from this forum is amazing! To find from country to country it's a waiting game. I know it's beyond frustrating BUT be patient because at the end of your journey you will want to know 100% what you are dealing with to get the right treatment. It took me 10 months of testing. Two bone marrow aspirations. Phlebotomy's in between tests. I was beyond frustrated. I just wanted to know!!!!! This amazing forum helped me to understand it takes time but at the end you will get a final diagnoses. To you from Canada🇨🇦

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