I am new to PBC, I have just recently been diagnosed so I do not know all the ins and outs yet. I did not know that PBC can cause forgetfulness. Is this accurate? Because that would explain a lot! I was diagnosed by my Gastro Dr. about a year ago. Who I think is AMAZING by the way, he sent me to a Hepatologist. The Hepatologist did his own set of tests (twice) because he did not believe that they were accurate. He said I was too young for PBC? (I am 35) He then performed a liver biopsy, but the tissue that he removed was said to be healthy. Except he told me that I have fatty liver. He told me he did not know why my AMA was positive, and my levels were so high, nor why I was experiencing all these symptoms (severe fatigue, really severe joint pain, forgetfulness, the itching 😫 etc.) He took me off the Urso, which I was unaware of until I went to refill my Rx. Then he told me he was going to just keep rechecking my levels every few months. I was confused so I went back to my Gastro Dr., he was just really confused too. He put me right back on the Urso. He said that a healthy biopsy does not mean you do not have PBC. That my AMA being positive, my elevated liver enzymes, plus all my symptoms clearly point to PBC. He could have just biopsied a healthy part of the liver since PBC attacks all different areas of the liver? So I guess my question is...is all of this correct? I have also heard that low Vit. D, and low Vit. B levels can cause more fatigue. Should they have tested my Vit. Levels as well? Also if this is all accurate how am I supposed to know what stage I am in?
Another weird thing is my best friends mom, that I grew up around. I found out that she had cirrhosis of the liver about 5/6 years ago. It's all I was ever told about the subject really. She was diagnosed about 8 years ago, and she passed away about 4 years ago from what I thought to be liver cirrhosis. Apparently she had PBC as well. This is very scary to me!!! I remember when I was a teenager being at her house. She would constantly be itching, sleeping, and complaining of her leg pains. Now I am the one itching, tired, and with the constant pain! I thought this was a very manageable disease? I have small children, and the thought of me not being here forever with them is the scariest thing in the world to me!!!! I try not to think about it because it just makes me very sad, and cry.