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Medical Misdiagnosis Nearly Killed Me

I knew I couldn't continue on following the lead of my doctors because they or whatever mystery condition I had was killing me. Still, I didn't take charge of my own health until the head and neck surgeon told me he suspected I had lymphoma. I knew then I wasn't ready to die, certainly not at 39.
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Female medicine doctor filling in patient medical history list during ward round. Medical care or insurance concept. Physician ready to examine patient and help
Female medicine doctor filling in patient medical history list during ward round. Medical care or insurance concept. Physician ready to examine patient and help

My mouth hung agape as I watched a doctor on Good Morning America point out that medical misdiagnosis is the third leading cause of death in the U.S., killing about 400 thousand people each year. I know, firsthand, that this is true because it almost claimed my life.

I live in the body of a senior citizen, even though I am just over 40 years old. How did I end up walking with a cane, riddled with scars, carrying a prescription case and with more doctors on speed dial than my parents and friends combined? I was misdiagnosed by doctors over a period of nearly 20 years.

You see, I suffer from a rare autoimmune disease called igG4 related systemic disorder and it mimics many other conditions. Early on, at least, the doctors I saw couldn't see pass my color when trying to figure out what ailed me. I was evaluated and tested for sickle cell, lupus, multiple sclerosis and sarcoidosis multiple times even though all evidence showed I didn't have those conditions; yet, their common conditions for my ethnicity. Of course, in hindsight, I know I didn't provide each, individual doctor with my complete medical history and I didn't insist on getting more than a few minutes of their time. I also didn't do a lot of research on my own to show them that their assertions about me could be wrong.

Doctors insisted my elevated sugar levels and blood pressure must be due to high blood pressure and diabetes even though scans showed I had an enlarged or fatty liver and pancreas, there were cysts around my ovaries and in my esophagus, stomach, and colon. I was also suffering from chronically swollen lymph nodes, which I now know indicate an autoimmune disease, infection or cancer.

Amazingly, I went along with whatever crazy treatment my doctors came up with for years even though my body was rapidly deteriorating. I rebuilt my stomach twice, had dozens of biopsies, took hundreds of pills and took what I call a hospital tour. In the meantime, I suffered two Tia strokes, lost my hair, gained 80 pounds and couldn't keep my eyes open pass 9 o'clock most nights.

I knew I couldn't continue on following the lead of my doctors because they or whatever mystery condition I had was killing me. Still, I didn't take charge of my own health until the head and neck surgeon told me he suspected I had lymphoma. I knew then I wasn't ready to die, certainly not at 39.

It was a life and death battle and I vowed, should I survive, I'd educate myself on my own condition and body; I'd learn to read the test results, image reports, and articles about advancements so I no longer blindly follow the advice of doctors. And, I did just that. I tracked down the best doctors and got myself healthier. But, the years of misdiagnosis have taken their toll. Chronic inflammation of my joints has twisted my spine, spread apart vertebrae and the s1 joint, permanently damaged my liver, and left me taking pills for the rest of my life.

I'm not bitter though. I'm grateful. My struggles inspired me to pick up my laptop and write down my story; detailing in graphic detail my aches, pain, bloodletting and recoveries, as well as my fight to live. At the end of my memoir, Misdiagnosed: The Search for Dr. House, I included a resource section with tips, useful places, information on clinical trials and other books that helped me. Since I released my book last July, I've blogged continually about my ongoing battles, offering my words of inspiration. Why? Because I don't want another person to end up like me, if they can help it; and that's because without and able mind and body nothing else matters.