Hello! I've had an awful few week's with stomach trouble but Monday evening after having one of my husband''s special omelette I had a reaction my top lip swelled badly, phoned helpline they said phone 999. Paramedics arrived checked my temperature 38.8 heart rate 109. Paramedics hadn't heard of ET before, I have a book which I was given from a leukaemia meeting showed them. On arrival to hospital was given antihistamines my body had come out in hives, whilst waiting for dr, nurse gave me a coffee and my lower lip swelled. Blood tests where done and my inflammation was high, calcium lower and liver high. I was kept in over night. Following day made appointment to see my gp, I was given adrenaline pen and more antihistamines, asked to go back next week for repeat blood test. Wednesday I see my haematologist said I'd had stomach pains for a few weeks, his taken me off Pegasey, i have been on pegasey since April, wants to see me in 8 weeks time my platelets were good 386, continue to take aspirin. Yesterday appointment with gp, more antihistamines, blood test for ovarian cancer and waiting for scan on my liver/pelvic 2 week referal. Keep having shivers my body hurts. Signed off work for next week.

9 Replies

  • Hi

    So sorry to hear what has happened and hope that they soon get to the bottom of it all for you.

    Good that you have seen your Haematologist and also best to keep them updated to your progress. It's difficult but I suppose understandable, that most healthcare professionals you come into touch with have either never heard of MPNs or have had no experience of them . That's when MPN Voice is so invaluable .

    Sending e-hugs and positive positive wishes

    Love Dianne


  • Thank you Dianne for your reply, no not many have heard of it. To be honest I have struggled at work, my manager sent me to hr. Hr sent letter to my manager saying just platelets play up, which wasn't much help to me. If I've gone to my manager said I don't feel well his comment has been need to get some more batteries for me. When I attended leukaemia meeting I was given books to show my manager and others, I showed my manager the other week he said we need to have a chat, unfortunately following day was when I was taken into hospital. As you say not many people know about MPN were very rare

    Linda x

  • So sorry to hear of your problems but sounds like after all the tests you will be a new woman. Thinking of you and send you lots of E hugs.

    Kind regards Aime xx😺😺

  • Thank you Aime x

  • What a horrendous experience. Everything has been thrown to you at once. Please keep in touch and let us know how you get on. Positive thoughts sent your way x

  • Thank you x

  • Hi seen gp today with these hives, itching, on steroids for 5 days. Hope these work my body is burning 😐

    Linda xx

  • Hi Linda, I am sorry to hear all of this, what a shocking experience, you must have been very frightened. I hope they get it sorted out for you. If you would like some of our information booklets please email me at with your postal address, it might also help you to have one of our medical alert cards, they have our website address on so that medics can look up MPNs if they don't know what they are, and you can write on what medication you are taking, again this will help medics if you can't talk for any reason. Hope you are feeling better soon. Best wishes, Maz x x x

  • Hello Maz, thank you I have emailed my address details

    Linda x

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