Hi, this is my first post and it's not so much a question but a rant. I had my gall bladder taken out 2 years ago after repeated gall stone attacks. Afterwards I had terrible stomach problems and after repeated consultations was told I had Bile Salt Malabsorbtion and also I had the antibodies that indicated I had PBC. I'd never heard of this before so did my research whilst waiting to see the specialist. Some of my symptoms fitted the diagnosis, fatigue, joint pains and dry eyes mainly. The specialist then said it was probably a false positive so they would retest in 12 months time as my liver function tests were normal. That test still showed the AMA antibodies and my liver test was still fine. The specialist concluded that I 'most likely' have the early stages of PBC and they would recheck my liver function in 12 months again.That's it. No information, no advice on diet, no advice on exercising when somedays you are so fatigued that you can't stay awake for more than an hour at a time, nothing. Just, 'yeah, you probably have this terrible disease - see you later'. I read posts by others talking about meds, and liver biopsies etc and they've not done anything like with me, should they have?
I guess what I'm feeling is just this awful sense of limbo and not knowing what to do to try and stay as healthy as possible (apart from the obvious).
Sorry for this long rant, but I didn't know who else I could talk to after the lack of response of the doctors.