Confused

Hi everyone. So I'm just back from seeing the out of hours doc. Have had a dull backache for a week now and from yesterday progressed to a sharp pain on the right hand side of my back. Was worried I had a kidney infection. Don't have an infection and the doc asked about the diagnoses of ET after reading my notes. He said he think's the backache is same as aches and pains have in my feet and hands but that those aches aren't connected in any way to ET. My haemotologist also said pretty much the same thing a few wks ago when he told me I had ET. After reading and receiving lots of reassuring messages on this forum that lots of people have these symptoms with ET I am confused and concerned that docs don't agree. If not connected to ET then why do I have these pains 😑

7 Replies

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  • Hi Mandy, I was just wondering, when are you next back to see the Consultant? These are issues that you need to raise with him/her. You need answers to what these aches and pains are if they are supposedly not connected to your ET, even if its only to alleviate any anxieties that you may have. I know you said that you're jak2 negative but have they done any other genetic testing such as Cal r? If you're not happy with the answers maybe you could consult a haematologist who specialises in MPNs to get these answers.

    Good Luck

    Mary

  • Morning Mary. I'm not due to see my consultant until January. When I spoke to him 3 wks ago I said again about the pains and stiffness but he really didn't seem to take it under his notice. He just said see if the aspirin helps. He is testing for calr and something else.

    I'm feeling a bit deflated again after feeling so reassured by everyone who messaged me on this forum. The pains are getting worse by the day and now this dull ache across my back and sharp pain under my ribs on right side of my back is worrying.

    Sorry for moaning. I know everyone has variety of issues to contend with its just this is all very new for me and conflicting answers to the symptoms of ET is confusing. My instinct is to listen to all you lovely people who live with the condition every day but leaves me with not much faith in doctors 😐

    Thank you for listening Mary and I hope you are feeling well.

    Many

  • Hi Mandy, I think it would be a good idea to go and see your own GP about the pain in your back and the ache in your ribs, there may be some other tests he/she can run to see what is going on. Hope things improve soon. Maz

  • HI Maz

    Thank you for your reply and yes I am going to get my doctor to investigate further. These pains are the reason I went to doc in the first place and im no further on with the reason behind it if they say aren't connected to ET.

    Take care

    Mandy

  • I had the same thing n i thought it was a kidney infection i got antbiotics now ive got a slipped disc with my left thigh totally numb!!! Dont leave it get it checked. Cos i have been in so much psin....

  • HI thank you for responding. I'm sorry to hear you have a slipped disc. My husband has the same and I know how much pain he was in. I'm just frustrated that the docs seem to brush aside symptoms that don't fit the tick list they seem to think comes with ET.

    Will definitely get my gp to investigate further.

    Thanks again for responding and take care.

    Mandy

  • Ur very welcome... keep pushing because if we dont tell them they dont add to the tick list... you take care also... im here if you wanna chat x