This weekend I went to a specialist in sunny San Diego. He is said to be an excellent doctor and knowledgeable with PBC. I went for a second opinion as to whether I have PBC or not? His response was in some ways informative, but left me more puzzled than ever and sad.
The only marker I have at this time is elevated ama 140 Titer. I do have sicca dry symptoms & heavy fatigue both which have been attributed in past to hormones and Fibromyalgia since 2008. He baffled me when he straight out said yes you have it! Your sister has it so do you. Given my knowledge from this helpful site and had to disagree with him and found his answer to quick and easy. He did a fibroscan and thank God, it was normal. I questioned that typically it is supposed to have other liver tests to make a PBC diagnosis to which he said that I was in a difficult category and usually it was his experience that patients with my symptoms and history developeed PBC later & it would start first with smaller issues that i now have. The only positive I derived from this visit is that he agreed that I do not need to be URSO at this time only when other markers start to change. Baffled!