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Is Doctor Envy Hampering Your Diagnosis?

Doctors Debate 8-year-olds Health and Presence of Tuberous Sclerosis

By Lucinda Gunnin, published Sep 20, 2006
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Last year, when I was diagnosed with multiple sclerosis, my initial, primary diagnosis came not from my primary care physician or neurologist. It came from my eye doctor. Subsequent testing proved he was right, but not before I heard some rather snide comments from my primary doctor that my ophthalmologist was not qualified to diagnose MS.
Never mind that 90 percent of the patients with multiple sclerosis have optic neuritis and have to be treated by an ophthalmologist. Nope, didn’t matter. My doctor thought he knew better than my eye doctor and even said that the ophthalmologist didn’t practice “real medicine.” 

I probably didn’t help the matter when I pointed out that my ophthalmologist is also a surgeon, something my primary care physician is not qualified for, but he made me angry. I had seen the magnetic resonance imaging (MRI) of my brain and the report from the radiologist. I had all the symptoms. Yes, I needed to see a neurologist for treatment, but his attitude that my diagnosis was somehow suspect until another specialist confirmed it lead me to look for a new primary care physician. I wanted one who was willing and able to work with my other specialists. 

Now, I find myself in the unenviable position of having to tell a distraught mother that she should consider finding another doctor for her eight-year-old daughter. Last week, she took her daughter Ryleigh in for a routine eye exam. Ryleigh is a healthy kid, just had her back-to-school and sports physicals and seemed a picture of health except for some minor skin discoloration on her legs and a strange rash occasionally across her face. Both of those had been discussed with Ryleigh’s primary doctor and he seemed unconcerned.

Takeaways
  • Find a doctor who listens to your complaints.
  • Tuberous sclerosis is a rare genetic mutation that can be crippling or fatal.
  • Sometimes the symptoms of a disease are not nearly as visible as we would like.
Did You Know?
One in 8000 adults and 1 in 6000 infants have tuberous sclerosis and nearly three-quarters of them did not inherit the disease, but developed it through spontaneous genetic mutations.
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