How supported do you feel by your doctor?

Looking back, first dr after I got Medicare didn't do enough to find the problem. Told me my enzymes were off, watch my diet. Never ordered another test to check if it was just an off day. Nothing.

Also looking back, I wrote off other body changes as just getting older. Me baseline health has always been strong, so I didn't worry too much, just figured I'd have to live with it. I was the opposite of OP Lew, lots of movement, so much so I started turning down social things because it was unpredictable and could last off and on for hours. Texture/shape went from normal to a sort of emoji 💩, but not diarrhea. Then color charged. Then even more changed.

Second Medicare dr showed curiosity about why my levels were high. Ordered more blood work. Ruled out NASH, fatty liver, etc and kept looking for an answer. Too confirm what he felt was PBS , sent me to gastro, who did more tests and confirmed. I felt relieved to have an answer; knowledge is power.

Changed insurance again for logistical reasons, and since I knew I had a chronic issue, told the new team primary, who has been very through on my care, tests, scans, mri's every 6 months. Team includes a gastro/ liver dr, physical therapy for strength and balance, and a psychologist. I feel very supported medically and that they take the time to answer my concerns. The unpredictable days make it hard on my family as well, and I do feel like a literal party pooper somedays. The weakness is an issue too, as just not able to do things that were. . .normal ... just a few months or years ago.

I have learned so much during this issue.

I retired late in 2023. 5 days later I didn’t feel well. No big deal. I’m never ill so I blew it off. Stopped going #2 on day 3. Got concerned on day 7 so I called my doc. They told me about a laxative and blah blah.

5 weeks later, I still hadn’t gone #2 and had lost 50 lbs.

Turns out a secretary was giving me medical advice. The only reason I didn’t die, was that I knew I needed nutrients so I was drinking 2 bottles of insure per day just for something. I was , literally staving to death cuz the body won’t accept food, when it can’t expel. Weakness doesn’t even begin to describe it. I forced my way into the stupid doc office to realize, the PA had looked over my last reg blood tests, which NOONE ever discussed w me, and was concerned about liver failure. She sent me to someone else, and poof!! I was diagnosed with PBC.

This is the process that taught me one needs to be your own advocate here. There are not enuf evil words in our language to describe my feeling about that old POS doc.

Now, I am on Urso, and doing well. Don’t really know I have an autoimmune disease at all. I am looking for education, support group stuff, and others experience. Also a place to ask simple questions.