Led Down the Path of Least Treatment: When You Live with Misdiagnosis
“You have textbook-case narcolepsy.”
The words hit me like a brick. Filled with chocolatey goodness.
I had spent the past 10+ years searching for the source of my discomfort. Then I spent another intense five years trying to determine if I had Multiple Sclerosis. I was sitting in a neurologist’s office. He was the third one I had seen, along with several internal medicine specialists, multiple rheumatologists, chiropractors, massage therapists, psychologists, psychiatrists and holistic healers. I had been fighting bouts of severe lethargy as long as I could remember, but they had gotten very intense in the past few years, almost completely debilitating me. I was depressed. I had mood swings. My joints hurt. Then body parts started tingling, falling asleep or hurting intensely for no apparent reason. I fell for no apparent reason, like a rock. That led to a sprained ankle. A broken wrist. A dislocated toe. There were days I had trouble speaking coherently. I had developed several intense phobias, including one that prevented me from talking on the phone. That was rather difficult, considering I owned a public relations firm.
I was told I had clinical depression. I was told I was bi-polar. At various times, I was told I had Fibromyalgia, Epstein-Barr, Mononucleosis, Systemic Candidiasis, Cervical Spondylosis, Carpal Tunnel Syndrome, and other conditions I can’t remember. I lost a baby in a late-term miscarriage. I found out later that the medication I had been taking for depression had been found to cause a higher incidence of miscarriage than was first indicated.
Then I began having trouble seeing out of my left eye. It was like I was looking through a spot of Vaseline, and bright lights almost rendered me blind. My eye doctor saw signs of optic neuritis and sent me to a neuro-ophthalmologist. Yes, indeed, my optic nerve was dying. Great. Yet another malady. I would have passed it off and chalked it up to just one more turn in my depressing life. But the specialist gave me a pamphlet to read about Multiple Sclerosis and referred me to a neurologist. I went through testing and there was no physiological sign of the disease. No lesions on the myelin around my spinal cord nerves. But I had symptoms. When I looked at my medical history, there were clusters of “episodes” of symptoms that looked like MS. But there was no physical proof.
“You definitely have MS,” the neurologist said. “I can’t prove it with tests, but I know you have it.”
Then he asked me what I thought was an odd question. “How do you sleep?”
“I am depressed, just lost a baby, most of my body hurts and I’m going blind. How do you think I sleep?” was my response. In truth, I had a terrible time with my sleep for as long as I could remember. I would be up all night for days in a row. Then I would be so tired I would sleep through an entire weekend. I had horrendous nightmares. My mother told stories of how, when I was a toddler, she would wake up to find me sleeping under the dining room table, on the steps, in the bathtub, and how she would be able to give me cough medicine when I was sick without ever having to wake me up. I carried on conversations while I was apparently “sleep-walking.”
A sleep study was scheduled. I failed with flying colors. Textbook case. Why had every other doctor missed it? And what price did I pay for all those misdiagnoses?
What I Know Now
- Nearly two-thirds of all adults have sleep disorder symptoms one or more nights every week. It’s estimated that as many as 30% of all infants and children have sleep disturbances.
- In a study conducted in 2010 by Charles K. Dunham MD, it was found that sleep disorders are misdiagnosed 45% of the time by neurologists, 76.5% of the time by internists, 78.1% by general practitioners, 88.9% of the time by psychiatrists and 99% of the time by pediatricians. When it comes to narcolepsy, 1 in 25 patients are misdiagnosed.
- You may be the last person to realize you have a sleep disorder. Ask the people you live with if they have seen you sleepwalk or appear to be out of it while talking or doing mundane tasks. Ask them if you snore, toss and turn, or yell out in your sleep.
- If you have vague symptoms, or intermittent ones, such as numbness, confusion, or clumsiness, see a neurologist.
- Ask questions. And then ask more questions. “What else could this be?” “What tests can I take to make a definitive determination of my problem?” “Is there a specialist I could see for another opinion?”
- Don’t rely only on your primary care physician. Your eye doctor, dentist and other healthcare providers may see signs of a problem before you have a reason to see your “regular” doctor.
- If you’re interested in reading more about sleep disorders and misdiagnosis, one of the best resources I have found is allsleep.com.
- Sleep tight.
Kathleen Walder is a writer and humorist. Her struggles with narcolepsy are chronicled in her blog www.sleepliving.wordpress.com
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