After nearly two years of procrastination, I finally dragged myself into the dreaded gastroenterology office to discuss my PBC. I stressed myself out to the max before the appointment, and left out of there more unsettled than I was upon arrival. I took the weekend to process everything that was said at the appointment, and I still can’t make sense of it.
I was diagnosed with PBC by a positive AMA M2 blood test back in September 2018. 95% of PBC cases have a positive AMA M2. My titer was 1:320. I have foolishly avoided the tests and scans that were recommended by my doctors at the time. I was scared to find out how bad my case is. My anxiety was so high that I couldn’t even manage to go to my appointments. Like I said… I was foolish.
Last week I finally went to the gastroenterologist and managed to actually go into the appointment. I met this new doctor who is young and bubbly and full of love and light and hope. I love her personality and she seems very knowledgeable about PBC and even has other PBC patients currently. These are all huge selling points with me. Just when I’m starting to like her, she goes on to tell me that I might not even have PBC and that my pain is likely something else entirely. I left her office with orders for an EGD, an ultrasound with fibroscan and blood work. Mentally I was not sure how to feel about what was said.
Initially, I felt the need to defend the diagnosis. I have spent two years being treated for PBC, learning everything that I possibly could, blogging about it, responding to the medication and now all of a sudden there is a possibility that this was a misdiagnosis? Nothing was making sense. I’ve always been a bit in denial about the scleroderma diagnosis, but the PBC diagnosis has always fit perfectly (including blood work) and I accepted it a very long time ago. I spent two days processing all of this new information and researching everything that I could… pondering, processing, thinking and wondering.
After the initial shock of my doctor’s words, I found myself almost hopeful that the original diagnosis is, in fact, a mistake. PBC is not a disease that I would wish on my worst enemy, let alone MYSELF, and if there’s a chance that it’s something more treatable or manageable then I hope that the new doc is right, but I am a pessimist, and an intelligent one at that, and I will be extremely surprised to find out that it is not PBC. I’ll find out for sure in two months when I return for the follow-up and I will update you all when I know for sure.
Until next time keep me in your thoughts and prayers. This might turn out to be a rough ride. Love and light to all of my fellow autoimmune warriors and friends and family.