How long did referral take?

Hello I am new to the site, I have been experiencing aching legs, rashes, extreme tiredness and I get so cold my feet are constantly freezing and when my hands get cold they are useless and I suffer with lovely blue lips lol. My doctor carried out autoimmune profile test, the results were at the doctors for a month before on the off chance I asked the receptionist who stated I needed to discuss my results. My doc said I had tested positive for PBC, then went on to say it may not be PBC. I then waited a further 2 weeks to find out my appointment was on the choose and book system, the earliest appointment is 5th march 2013. Sorry bit of a rant prob doesn't make sense but that wait normal ? Thank you x

5 Replies

  • I was referred from the hospital rheumatology department to the gastro department....from the date I had a letter from gastro confirming receipt of my referral to getting their appointment took around 5 months, June to end Oct. PBC is very slow to progress so if it does turn out to be that 3/4 months is not too long to wait.

  • Hi, I have been having tests, scans and all sorts of things since last May and still have not got a definate diagnosis, it seems to take forever and I don't think the medics always realise what a bombshell they drop on us and then leave us to stew but since reading this site and other reserach I think PBC is not brill but there are worse things and we will have to learn to live with it. I must add that my GP and Consultant have been great slow although I know others have not had such good service.

  • Hi Safro welcome to the site my Gp told me at the time I was diagnosed (which took about a year of to-ing and fro-ing from the Gp to the medical consultant in my local hospital) that the waiting list for an appointment with the hepatologist( some 80 odd miles away) was at that time (2002)about 3 months so to be honest as I was at the end of my tether having suffered severe itch, joint pains and fatigue for a year I ended up getting a private appointment within days. I know this is not financially possible for everyone but I just had to get a definative answer and treatment for my symptoms asap. Fear not though having PBC is not the end of the world click on my icon or others to read bloggs on our experiences might put your mind at ease but if I were you I would avoid reading too much til you know for sure if it is PBC you have. Good luck hope you get answers soon and more importantly relief or help to control your symptoms.

  • diagnosed 7 years ago. Had no follow up appointments. No treatment except for Losec When symptoms got worse I told my GP I wanted to see a consultant. and I had to wait 17 months. Saw him earlier this month. He concentrated on the sjogrens that I also have and said I would have to see a different consultant with the PBC

  • Thank you all for your replies, I am just a little inpatient. It has just sent me into the "what if" confusion and panic.

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