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Questions to ask new Dr about my PBC

Autoimmune Diseases | Last Active: Dec 7, 2021 | Replies (6)

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@rosemarya

@jandgritz001, I commend you for your appointment with a new doctor after your move to a new location. As you know Primary biliary cholangitis, previously called primary biliary cirrhosis, is a chronic disease in which the bile ducts in your liver. Progress overtime is something that can provide your doctor with a pattern of your disease. Since you mentioned that your previous doctor did not keep up with records, do you have access to what he did keep? Now would be a good time to begin to collect medical records to share with the new doctor.

When I was treated by a gastroenterologist (GI), I was fortunate to have a doctor who was well trained in liver diseases. And he was in a close professional relationship with his mentor who is a liver specialist at a transplant department of a regional university hospital. I was diagnosed with a different bile duct disorder after referral to the liver specialist. He knew the particular signs and the necessary test for accurate diagnosis for my situation. I had primary sclerosing cholangitis (PSC). After that, it was my local GI who monitored me through routine follow-ups and labs for almost 9 years. Every 3 months he checked my labs and it was the pattern of the labs over time, plus my diagnosis and symptoms that guided my treatment.
I know that is probably too much information for a Monday morning, however, I want you to be know that I had a bile duct disease, too.
Each one of us with liver disease has common and different side effects. My side effects ranged from mild to life changing over time, and do not mirror some that other members have experienced. There is no one-size-fits-all, so I hope your new doctor has experience with liver disease diagnosis and treatment.

You asked about what questions to ask, and I thought it might be helpful to begin with a review of PBC before you go to your appointment. In addition to diagnosis, tests, side effects of PBC as well as possible questions for you to ask, -and also questions to expect from your new doctor.
https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis/symptoms-causes/syc-20376874

Here is a discussion -
Your Tips on How to Get Off to the Best Start with a New Specialist
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

@jandgritz001, What is your expectation for your first visit? Will someone be accompanying you?

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Replies to "@jandgritz001, I commend you for your appointment with a new doctor after your move to a..."

Thanks for all this info, see my doctor tomorrow. I feel better prepared