Mayo care for Primary Biliary Cholangitis (PBC)

I also read the article or post about the care this person had. I hope they called the operator and asked to speak to someone to file a complaint. I do know that is the best thing to do.
If you have not been at Mayo For many years, make sure you have a copy of your medical history from the doctor you are seeing or been seen.
Bring all pertinent information with you to your appointment coming up
And I hope you have a great results

I just left another post on my experience in Rochester MN with the neurology group. They were very nice and they performed lots of tests, but nothing I needed. I needed the AI consultation to see if it could be determined if there was an AI disorder that was causing my peripheral polyneuropathy to stop it from getting worse. If we could "cure" or manage the AI, there was a good chance the neuropathy would not worsen. But the gatekeepers said I had to go through neurology and they would involve the other disciplines while I was there. That did not happen. It was a waste of time. I saw no one else and they refused to refer me, even with the positive marker for PBC and for AI.

Then I went on my own referral to FL because they allegedly had the "best" gastro and hemotology department and that is where I needed to go to get an opinion on PBC. I went and that was even worse! The Dr. was absolutely miserable and dismissive. She did not want to even listen. I spent all of 15 minutes with her for the initial consult. She had not planned any testing whatsoever. She reluctantly agreed to bloodwork and an MRI. This would be the third blood test for PBC but Mayo said I didn't have it as AMA was negative. I asked why two others showed positive AMA but not on Mayo's test. They said that sometimes the markers play "peek-a-boo" and that if it is not a case of "peek-a-boo" then is because they have better equipment than anyone else. She then said just go to a dietician and lose some weight. Yes, I had gained 40 lbs or so from meds or AI, but I wouldn't say I was huge such that diet would be recommended (125 to 165lbs.) So I went to a local gastro, he again confirmed positive test for AMA but also showed one enzyme elevated (GGT) which is often first sign of PBC. Mayo did not do that blood test. I have NO idea why. So no, not happy with Mayo at all. That is two trips plus expenses absolutely wasted. If they would have just listened to my complaints and what I was saying the first time, I would not have wasted my time in FL. Honestly, that was such a horrible experience that I would not go to that gastro clinic ever. I had just come off of a year where my father had a stroke leaving him in need of 24 hour care, all of my husband's family passed away within two months (mother, 2 Uncles and an Aunt), my brother was intubated for 14 days from a bee sting and just coming off when I left the first time, my sister's husband was diagnosed with ALS at 52 and my Mom underwent carotid artery surgery on both sides. I really really did not need this and was so incredibly hopeful that I would just come away with knowledge, a plan, something to tell me what to expect. Again, I was so sad.

That is my experience and I hope and pray you have a better experience. I think it can be a wonderful place, I just do not know as I have not experienced that. God speed.

Hello. I was diagnosed with PBC at Mayo clinic in Jacksonville, in June. I am satisfied with my care there. They have advanced diagnostic tools. What I am happiest about is that they contact me whenever something is due such as bloodwork or time to make a follow up appointment, etc. I hope this helps.

@jpetroff18 thank you! I called and spoke with the GI department in Scottsdale. They said the initial visit is just a consultation, but also a treatment plan will be created at that time. Future visits can be virtual. They will do any major procedures on site (biopsy, etc.) but not that day. They would have to determine what they were going to be and set them up for another date. More minor procedures, like bloodwork and ultrasounds can be done where I live, which is about 11 hours away. I’m happy with the conversation and the plan.