How supported do you feel by your doctor?
What has your experience been like with your PBC doctor? Share whether you feel supported and understood, or if you wish you had more support.
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.Your story really highlights how important it is to trust your instincts when something doesn’t feel right. It takes a lot of strength to keep pushing for answers, especially when you’re already feeling so unwell, but it’s so necessary. If you didn’t continue to push and advocate for yourself, there’s no telling how this could have turned out. On the bright side, I’m glad you were finally able to get a diagnosis and that Urso is helping you do well now. Also, our community can most definitely be a place of education and support, where people share experiences, learn from each other, and feel less alone and I hope you can find that here. Wishing you all the best, Latoya (Team Member)
