Well, I am aldrichgirl and was writing to Kathy. I am 61. The only way to get a true diagnosis of this disease is to have a liver biopsy performed. They just do a needle biopsy now, I think. URSO is the only med for this disease. It is also called "ursodiol". Somehow it works to keep you bile levels down so you don't have the severe itching. There is nothing thay can give you for the lethargy, sorry to say. If you think you have it you really need to get the dr to check it out. I was told that it is strickly genetic. Someone, somewhere in my family had it. I think it might have been my paternal grandfather. I was always told he was a drunk and that's what killed him. He left my dad and his mother when my dad was just a kid. But my father's sister (estranged from my dad for 30 yrs) said he never did drink. I think it might be possible he had it and that is what killed him. Since it was so rare in the 50's most docs didn't know about it. Also in my dad's family, if you ever had alcohol in your home you were considered an alcoholic.
I truly hope you don't have it, but if you do you really need the bioply to also tell what level you are at. It took a lot of years for my liver to get enlarged and this is the first year that the fatty deposits showed up. Take care and God bless. @mayolily