I feel the care I have received has not been the best,The gastro I was referred to first and the one giving medication for Pbc.Openly admitted he knew very little about the disease. I had to get my own appointment for the heptologist as they had lost the original doctors request for an appointment , I have waited since March and my appointment is August. My gps, I am at a small surgery in a village and could see any doctor.are not clued up at all.I was told I had Pbc on my 60 birthday with the words you have this condition you take tablets you will be alright . And this is pretty much what has been echoed with every doctor I have seen so far,and if anybody else says be positive , I shall have to punch them on the nose,As they don’t have this I do not much support offered at all
Just take the tablets and go away - British Liver Trust
Hello George,the pbc foundation is very helpful if you haven't joined them they have lots of information they also run a forum on health unlocked.It's a lonely experience I found being diagnosed with pbc.I hadn't heard if it when diagnosed I have found the forum really useful it has helped me to feel less alone and the people at the foundation have been useful too.I hope that you will do well on the medicine.But support dealing with symptoms is hard to get from doctors. I have found other people with same problems much more useful.I have had pbc diagnosed now for around 8years but probably had it for 13years,I have other autoimmune diseases too I find my doctor ok but he doesn't do much apart from the medicine and periodic checking for associated problems, ultrasound and endoscopy.Jane.