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New member - living with essential thrombocythemia

Carl0
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Hi there i have just found this forum. I have ET i am 52 and was sent for blood tests april 2021.because i was feeling unwell  migraines visual problems very very tired  The Blood tests showed hi platlets so i was sent for a biopsy which showed i am  jak2 positive .I had a mini stroke in 2018 and i had deep vein thrombosis in 2020. So i was already taking a blood thinner the consaultant put me on hydromoxide 500mg 3 days a week and i had a blood test 3 weeks ago to see what my levels are and they have nt dropped so i am now on 500mg 5 days a week . I will br going for blood tests next week to see if the new dose has dropped my platlets. Feeling so so tired still head ached have gone but get pins and needles more now in hands and feet and chest. Finding it hard to cope with working full time anyone else feel the same or reduced there hours or stopped working 

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    Hi Carl0 , sorry to hear about your recent diagnosis , I'm to on that journey at the moment, having had a high platelets . I've had an x Ray and numerous blood tests I've lost count . Suffering from fatigue and dizziness etc .
    Next week I have a kidney scan and a bone marrow biopsy . 
    Did you have one to as I'm anxious just thinking about the procedure. 
    Trying to figure out the cause , could be kidney stones which may be causing the rise in platelets or could be something else . I'm only going to be reassured perhaps after all the tests have been carried out then I have a consultant appointment on the 2nd February.

     

    Any advice would be very welcome.

    I hope you are doing well and coping ok .

     

  • Offline in reply to Lou69

    Hi there, I’m struggling too

    im only 24 years old and have been diagnosed with this, I have two very young children and I’m struggling to take care of them full time and do everything else myself. I was only diagnosed this past Friday 

    i have had any other tests yet still waiting on my appointment with my specialist 

     

    any advice will be helpful

  • Offline in reply to jazzybee98

    Hi Jazzbee98 , 

     

    So sorry to hear of your diagnosis and that your struggling to cope . It must of been a shock , I'm finding the forum a great help . I'm sure there will be other members who will get in touch .

    If you don't mind me asking was your diagnosis purely on blood test results.

    Im still waiting for my bone marrow biopsy results, ( 3rd May )  taking longer as these needed to be sent away for further testing and a second opinion. 
    I have had several other tests and consultants appointments. 
     

    It's a lot to take in at the moment and trying to keep everything going at home and work . 
    Take each day as it comes , I'm here for a chat anytime.

    Lou69
     

     

     

  • Offline in reply to Lou69

    Hi

    yes as that's what the hospital has said

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