PSC or AIH???

I am very sorry to hear that. My inclination is that this situation is somewhat above the pay grade here, but I wanted to say that you are doing the right thing by bringing another doctor on board. Keep pushing for answers and best of luck.

Quincy, he was diagnosed based on elevated LFT's and a liver biopsy. However at the same time he had Pancreatitis and his gallbladder was all inflamed and had to have it removed. He had so much going on at one time that it was hard to tell what was going on. Previously he had a stone in his bile duct also. I've got 2 doctors that say its PSC, one who isn't sure and one who says its AIH?!?! His ANA levels are elevated but I believe the UC can cause that to be elevated as well as AIH. I just wish we had a clear answer. From my understanding usually the AMA is elevated with AIH and the PANCA is elevated with PSC. I just want some answers. I am just about fed up with these doctors. I understand it's a very difficult disease to diagnose but it's also very difficult to be on this roller coaster ride that we've been on for 6 months.

Thanks Quincy. He did have an MRCP and one doctor said it didn't show any PSC but the hepatologist said it did. To be honest, I don't think anyone really knows. He's not having any symptoms at this point, so if it is PSC then it will show itself in time. He's previously had stones in his bile duct so maybe that caused the duct to become dilated?. Ive had to educate myself because we surely can't rely on the doctors to do it. I am just soooo over these doctors!!!

Quincy,
He had the stone removed last year in March via ERCP. He hasn't had any invasive tests other than the liver biopsy last November, and they did that while they were removing his gallbladder. Otherwise, I would have not allowed them to do a biopsy. Biopsies don't provide much information for staging PSC and is very subjective to say the least. The only testing I plan to do is blood work periodically and MRCP if/when needed. I was prepared to tell the doctors that we will not do another ERCP just for them to go in and look around, but fortunately they didn't see the need to do one since he didn't have any signs of a blockage. I've heard too much about the things that can happen when they go in and "look around".

The strange thing is this; the doctor who did the ERCP in 03/2011 told us that everything looked good and he removed the stone. (the word PSC was never mentioned). Isn't ERCP the "gold standard" for diagnosing PSC? Funny how nothing was there in March and then in November, one doctor says the MRCP looked fine and another said it showed an area of "constriction" and beading. Just strange how 2 doctors can look at the same set of pictures and not able to agree on what they see. I have also wondered if maybe one of bile ducts could have been damaged during the ERCP in 03/2011 and maybe that's what they saw on the MRCP in 11/2011???

Maybe I am grasping at straws here, I don't know. It just all seems a little confusing to me.