Does ANYBODY know about Retroperitoneal Fibrosis

Hi Christine,my name is anne and i live in Wales.Ihave just read your experience,i also suffer from this terrible disease for 11years,you are the first person i have come across in the uk.I have been searching for 10years.I am under a urologist i have attended the renal unit every 2 to 3 months for 11years.I have had dyalasis my right kidney has stopped functioning.Iam in the same boat as you are, as nobody can tell me anything about this disease.In the search bar punch in,Doctors that specialise in retroperitoneal fibrosis,there will be a big list there of names of doctors all over the world,i was on the web last night and there are doctors in england there.Hope this will help Christine.It would be nice to exchange email addresses if you are interested.My user name is desa.best wishes Anne

[quote:8e61326209=\"Christinealice \"]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.[/quote:8e61326209]

I live in Greee and have just being diagnosed with the same desease. It is rare but you MUST talk to a specialist VERY SOON because if you are not given corticoids or other therapies available, your kidneys might suffer or be damaged. Of course you must be sure for the diagnosis -it is a rare and complicated desease and there are also other deseases with alike symptoms and the diagnosis is properly done either with a biopsy of the mass or with a very experienced radiologist (MRI and CT and utrasounds). The diagnosis took me 2 months (of severe pain in the back and abdomen) in Greece and most of the doctors I talked to, knew nothing about it and wanted a biopsy done to be sure -they almost whished it was cancer, because they know a lot about cancer but nothing about this rare form of fibrosis. In Greece only urologists and reumatologists deal with it. Some consider it an autoimmune desease. If an experienced urologist is not available near you, find SOON a specialist on autoimmune deseases. Best lack.

Hi Christine My Name is David 35 and I Live i London I was diagnosed with RF around April this year after spending 2 months in hospital . prior to that i was experiencing back and abdomen pains , lose of apatite and just over all unwellness . I was under the Rheumatologist At the Royal Free in Hampstead due to an underlying conduction called Undiffrencated Conective Tissue Disorder . cut a very long story short i had major surgery in july. Right now the symptoms are showing up again and after doing some research a drug called AZA might relive my symptoms .I have been on Steroids, Tamoxifn and MMF(Mycophenolate mofetil).

Hope this is useful

Hi Ann

My name is Lily. I live in London. My brother who lives in Spain has just been diagnosed with retroperitoneal fibrosis. Doctors there asked my brother to come for check up in 3 months time and that was it. My brother is going to come here in january and I would like him to see a specialist here. could you please give me advice where to go for help and advice.

I could not get tha list of specialist in London.

Thank you

Hi guest, hope you're still looking at this site. My cousin has just been diagnosed with retro peritoneal fibrosis. I've never heard of it before. She had a very difficult birth about 10 months ago. Could this have been the cause? She was in hospital for 7 weeks but at least they found out what it was. Hope you have recovered.

best wishes JK

Hi I dont know if this will help but my RPF specialist is based in London at Guys Hospital I have to travel from Hampshire so its a bit of a jog but MrTim O'Brian is really the best in his field for RPF.

Hi. My late mother had this.It I is thought to be an autoimmune disease. The sooner it is investigated by someone who knows all about it the better. My mother was on steroids for years and that kept her fit and well for years. She died at the age of 83 from something else.