My advice Christie, is to visit Mayo or google and contact Dr John Stone at Massachusetts General via phone or email, tell him about your symptoms and diagnosis. He may want to look at any biopsises or see you in person. He's one of
a handful of
doctors observing and publishing on IgG4-Related Sclerosing Disease.
As TD2464 mentioned, it can manifest in places outside of the panceras/liver/bile ducts and researches are in the learning phase right now, waiting to see where it pops up next.