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Help with Polycythaemia - struggling with lethargy, joint pain and work. Does anyone have any advice?

Albert123
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Hi, everyone,

Just wanting advice really 

I have jak 2 Exon 13 r564l mutation,

I had a raised Hb and pcv managed well with venesections and aspirin,

I suffer with lethargy, joint pain, cloudy consciousness,

I'm struggling with work, and have been off 7mnths , my consultant states i will be fit to go back to work, but I'm not seeing any improvement of symptoms at all,

I'm awaiting genetic counselling, not sure I qualify for NHS ill health retirement, I'm 53 with 26 years work history.

Can anyone advise? Please x

  • Hi Albert123,

    Welcome to Cancer Chat.

    I'm sorry to hear you are struggling with this. It sounds like you're waiting to receive further support and I hope you get this soon.

    Typically it would be your doctor who is best placed to advise. It might be useful to talk this through with your GP, in particular to discuss how you're feeling, what next steps you could take, and what additional support is available.

    You are also welcome to post in the 'Ask the Nurses' section of this forum if you'd like to receive a reply from one of our nurses, who may be able to offer further advice.

    Wishing you all the best,

    Ben
    Cancer Chat Moderator

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