Delays to My Diagnosis

In about 2010, I began seeing my primary care doctor, complaining that I was exhausted. She lectured me on too much international travel, working too hard, not sleeping well, and not eating well. This went on until 2014.

I had serious back pain, along with (I learned later) several AI disorders. After weeks with the back doctor, he said, "I think you need to go back to your gastro or see a cardiologist."

Time for a liver biopsy

My primary care doctor said, “Well I know it’s not your heart.” So back to the gastro, who had run many tests on me previously. We sat down, and he asked me question after question after question for about an hour. The last question he asked was: has your skin changed? I replied, “yes, I can now lay in the Florida sun from sunrise to sunset and then go to the tanning booth and never burn.” He said, "I think it’s time for a liver biopsy."

Let me say here, I will never do another liver biopsy. That was the most painful thing I’ve ever had done, including knee replacements, hysteroscopy, and fishing for stones that traveled through my body from my gallbladder. Anyway, I feel like I should’ve gone back to the back doctor to tell him what we found, in case he ever runs into it again. Of course I had PBC, AIH, and it even says PSC on my biopsies.

Doctors had mistaken my fatigue for something else

What I learned? The word exhausted and the word tired mean nothing to the medical community. You must use the word, fatigued.

I also learned that there are different ways to introduce Ursodiol into your body. After failing the first time I soon found my own way to success. Ask me if you’re having trouble adapting to Urso.

Two questions I ask every time I see my Gastro or my hepatologist at U of M are:

• What is my stage?
• What is my MELD score?

How my PBC progressed

I’m still learning every day as they add more and more symptoms and complications to the list associated with PBC.

I learned that nearly every diagnosis I’ve had from 19 to 76 has been autoimmune. Unfortunately nobody told me it was autoimmune back then.

After sitting at stage two for 11 years, I flipped into cirrhosis, just like overnight. I knew my liver was changing because I could feel it.

I’ve been diagnosed with fibromyalgia. But now that I see all the new symptoms and complications associated with PBC, I’m thinking maybe I don’t have fibromyalgia. That said the Cymbalta truly does help with pain.

Best wishes to all.