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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Good doctor for diagnosing PSC

First of all I would like to thank anyone for any help you can provide.

I was recently diagnosed with chronic pancreatitis, but this does not seem to explain all of my symptoms, which include not only upper right abdominal pain, yellow stools, an elevated ALT level, and (things that haven't yet been explained) dry, peeling skin even on the palms of my hands, dry mouth, and dry eye (as well as dry sinuses).

It took years and seeing a doctor who actually specializes in chronic pancreatitis to finally figure that out. I am thankful that we have modern medicine as a tool, but also believe that it can take one's own initiative to get things done correctly regarding diagnosis and treatment. So, I'm asking if anyone has any recommendations on a doctor or clinic that specializes is PSC that might be able to tell me if I have or potentially have it. I am in the St. Louis, MO area but if necessary will travel (I had to go to Minnesota, for example, to get the chronic pancreatitis diagnosis).

Did they absolutely rule out autoimmune pancreatitis? Have you had endoscopic ultrasound and/or been tested for IgG4 levels? My sclerosing chlangitis is secondary to AIP. I don't have the dry, peeling skin. Perhaps another overlap autoimmune condition? Did they rule out Sjogren's for the dry eyes/sinuses?

You're right. that's true about IgG4 testing and the endoscopic ultrasound is somewhat more reliable for pancreatic. And yes, very tricky indeed these autoimmune disorders!

Afraid I'm not familiar with docs/centers other than where I live. The jury is still out from what I read about ursodiol but I'm sticking with it in case it's helping to some degree. Great about ALT dropping. Hard to know to what degree the meds contributing and what's consistent with these diseases. Sorry am not too much help...

I was diagnosed with PSC by a hepatoligist in Dallas, TX. He is the medical director at Methodist Liver Institute. Had been going to a gastroenterologist for years with no diagnosis. He sent me to Parvez Mantry who said “I will find out what is wrong with you” , and he did. They have a transplant team there and are well thought of. I get excellent care there and if I have a question or concern they always call me back. I highly recommend this group of doctors. You can Google Methodist Liver Institute and check it out. Has a list of all the doctors and how to reach them. Hope this helps.