Dr. Jones makes it quite a point by saying that " there are 2 people in the room and one is much more invested in the conversation than the other". Wow is this ever true?!!
So many of us are being cared for by doctors who really aren't that familiar with PBC - or caring for someone who has it. Few primary docs and even most of the GI ones really aren't. You are lucky if you find one that will admit that and offer to learn along with you.
We have such a responsibility to learn as much as we can about our disease. This is the only way we will know if we are getting the right care or not. We are in this for long haul. We have to be on the right track.
The comment earlier about advocating for yourself is crucial. We have to know when to respectfully question them. Have these conversations with them.. you owe it to yourself.
Some great sources of information are The PBC Foundation (it's free! pbcfoundation.org.uk
The American Liver Foundation, Canadian PBC Society, or any articles that come from the Mayo or Cleveland Clinics. If you have access to any gastroenterology magazines, they often have articles in them as well about aspects of PBC.
I sometimes just Google (carefully) articles about developments in PBC... sometimes we just need to be proactive in learning all we can.
Is everyone a member of the PBC Foundation UK
