One thing I’ve learned since jumping head-first into the autoimmune community is that most people struggle for years to find a diagnosis. They suffer decades with unexplained symptoms. Their labs come back normal for years. They suffer in silence, treated as hypochondriacs. My story is quite the opposite. I was in the prime of my life. I referred to myself as “a picture of health”. That all changed in March 2018.
I went to my primary care doctor for a follow-up on my recent bout of bronchitis. While there I just happened to mention that my fingers turn corpse white at times. I showed him a picture and he says, “Oh! That’s Raynauds!” He ordered some labs to rule out other diseases and conditions. He assured me that it’s more than likely Primary Raynauds and not that big of a deal. Two weeks later he was singing a whole new tune. My ANA (Anti-Nuclear Antibodies) came back with a high positive of 1:1280. The anti-centromere pattern told him that I either had Scleroderma or CREST syndrome. I was referred to a rheumatologist for confirmation and treatment.
At the first appointment with the rheumatologist, I was given lab orders and a diagnosis of fibromyalgia. I had long suspected fibromyalgia, so I wasn’t shocked at all by that diagnosis. However, we knew that fibromyalgia was not the cause of my high positive ANA. The doctor initially told me that he did not really think that I had CREST syndrome or scleroderma, but he ran the labs anyways.
In September I went back in for a follow-up and my lab results. I was not prepared for what was to come… Dr. Martin went over the test results with me and did in fact, diagnose me with CREST syndrome, but CREST was not my only autoimmune disease. The doctor had also ran my AMA (Anti-Mitochondrial Antibodies), and the results pointed to Primary Biliary Cholangitis (PBC), which is an autoimmune disease that is affecting my liver.
I was blown out of the water with the diagnosis of a liver disease. I’ve never been a drinker. I was the healthiest that I have ever been in my life. I ate healthy, exercised more than regularly, and drank water like a fish. I didn’t take any drugs or medications with the exception of my vitamins and protein shakes. How could I have liver disease? I am still reeling from this diagnosis a month later.
When I was diagnosed with these conditions, it did a number on my mental state. I went through so many phases, and so many contradictory thought processes. I wondered what changes I would have to make to be healthier. I wondered what the quality of my life would be. I wondered what effects this would have on my marriage, and were we strong enough to survive this? I wondered if I would see my children grow up or graduate high school or get married. I wondered how long I would be able to work full-time. Honestly, I’m still wondering about all of these things and so many more.
The doctor told me that without the liver medication that he was prescribing me, I would have an estimated ten years before I would need a liver transplant. At 34 years old the thought of needing an organ transplant seems like the end of the world to me. I’m no fan of taking medications. I spent many years avoiding medications and the ill side effects that they bring along with them. Unfortunately in this situation, the benefits to my liver do outweigh the risks. If I’m responsive to this medication, it could possibly be twenty or more years before I need a transplant. I try not to think about the “what-ifs” and “might happens” as they tend to just make me insane. For now I try to stay positive and take the medications and hope for the best possible outcome.
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