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Does ANYBODY know about Retroperitoneal Fibrosis

Posted , 13 users are following.

Guest
Guest

Hello, my name is Christine and i live in the UK, I started getting back pains in March 2010 and attributed it to my job. In May 2010 i went to my GP and was signed off work as \"sick\", and prescried painkillers, which do not always work. My GP sent me to see a Rhumatologist who gave me a CT scan, which showed i had Retroperitoneal Fibrosis. The consultant then refered me to a kidney specialist. The problem is NOBODY has either heard of or knows anything about this condition. My GP even went as far to say that i was going to be a \"guinea pig\" for all concerned. I saw the kidney specialist, (or rather his intern), on 8th October 2010. He kept leaving the office during the interview to consult with the specialist. Nothing was done, no treatment was given and i was told to make another appointment with the hospital in THREE MONTHS. Can ANYBODY help me find a specialist who KNOWS about this condition in the UK.

Thank you.

0 likes, 23 replies

23 Replies

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  • ghazals25112
    ghazals25112 Guest

    Posted

    Hello christene i read your thread how are you doing has your ilness gone what treatments did you go through i would love to hear from you my husband going through hell with this ilness please let me know
    • jenny06129
      jenny06129 ghazals25112

      Posted

      My husband is being treated for retroperitoneal fibrosis at UCLH hospital London they have a specialist team there lead by proffeser Webster.

      He is getting excellent treatment 

      He had the same response at first from doctors as this is a little known illness the team at UCLH are doing research studies and getting good results.

      Good luck

      hope you can get a referral  to UCLH. 0  Report this Reply

  • jenny06129
    jenny06129 Guest

    Posted

    My husband is being treated for retroperitoneal fibrosis at UCLH hospital London they have a specialist team there lead by proffeser Webster.

    He is getting excellent treatment 

    He had the same response at first from doctors as this is a little known illness the team at UCLH are doing research studies and getting good results.

    Good luck

    hope you can get a referral  to UCLH.

  • jenny06129
    jenny06129 Guest

    Posted

    UCLH IN LONDON ARE DOING RESEARCH STUDIES INTO THIS ILLNESS AND GETTING FANTASTIC RESULTS.
    • Jk1952
      Jk1952 jenny06129

      Posted

      Thanks very much Jenny. It is my niece who is suffering . It seems to have been triggered by a difficult birth. She has gone back to work now after mat leave and seems to be being well looked after.

      it was touch and go until she got the right diagnosis!

      i wish you and your husband well,

      regards,

      jeanette

    • Jk1952
      Jk1952

      Posted

      Not that it matters but it is actually my cousins daughter. As her mum has died I class her as my niece. She lives in Northants. If you have any advice/tips I will pass them on.
  • jayamuruga83081
    jayamuruga83081 Guest

    Posted

    got your points and am the one pretty much 100% same issues as like you and suffered for 15yrs,

    Now its all ends up we people have our solutions and you can't get a solution from any doctors around the world,

    After 15yrs back Am not just recovered I just ran successfully in 8km mini marathon in Bahrain , .

    So for got everything, you don't need any kind of doctors or medications,

    I can promise here by if you believe me I will make you runaway not only from your apartment, you will see as like me ,,,,, pls follow me and get well as like me , without spending single

    Dollar you will be rocking,,,,

    I don't know how to educate and bring awareness around the people in world who suffers as like.

    Count your days you will be on your mark on human race to excel,,,

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