I was dying and no one, including my cavalcade of doctors, seemed to be able to stop the process. Year after year, I watched helplessly as a mystery condition chipped away at the organs in my body. I knew I had to step up and take charge of my cares or I'd leave this life before I was ready.
One day, while watching the television show House M.D., it occurred to me that maybe, just maybe, a person specializing in diagnosing rarer conditions might exist. I wondered, how do I find them? That's when I decided to turn to the skills I'd learned by watching a reading about some of the world's best fictional detectives, Sherlock Holmes, Jessica Fletcher and Adrian Monk.
I focused on the kind of basic questions any good sleuth would ask while trying to find a mystery attacker. I started with asking when the perpetrator first appeared. In my case, I pondered when I first began to experience symptoms. Next, I asked who the likely suspect is. Again, I changed it a bit to think about what known diseases mimic my own condition. Then, began doing what every detective does; I started ruling out what didn't fit.
To get the answers, I first had to collect my clues. I wrote down all procedures I'd had, the medicines I took and kept a journal of my symptoms. Then, I got copies of my medical records from my current doctors, including copies of radiology reports, blood tests, and images, x-rays, CT scans and MRI's on disk. Then, I hit the Internet.
I didn't go to a website to diagnosis me. Rather, I looked up the list of the best hospitals. I also scanned the guise of the best physicians. I figure one of the best in the field might, at least, be intrigued by my case. Then, I tried to figure out, based on the specialties, which doctor might be best to help me.
Scanning over my records, I found that the one thing my doctors agreed on was what we was ailing me was likely autoimmune related. So, I jotted down a list of the highest ranked immunologist and rheumatologist and began calling.
I'd also stumbled upon a listing for the national organization for rare diseases, the national institutes of health and the clinical trials.gov. I figured of my efforts failed one of these resources might be able to help me.
I prayed as I made two appointments with leading rheumatologist. Each appointment, I dragged with me my investigative files and I had my list of questions. No matter how busy the doctor claimed to be, I asked what I needed to and waited for a response. I subjected myself to blood tests and more invasive exams. Then, at stop number two, the doctor immediately told me she suspected a rare autoimmune condition named: IgG4 related systemic disease. I couldn't be cured but I could live a better quality of life.
I'd solved my mystery without a death being necessary. The only thing that was arrested that day was the progression of my disease or at least that's my hope.