Thursday, December 21, 2006
Solving your medical mysteries
When I met Dinh Thai, he had endured a near-constant facial twitch for three years and was excited about the brain surgery that would eliminate the spasms. The twitch had disrupted his sleep, his social life and his professional world for long enough. It went on for three years because no one could diagnose the rare condition (a hemi-facial spasm) properly. He had seen a neurologist, an ophthalmologist, an acupuncturist and a dermatologist, as well has his own family doctors. Finally a friend of a friend referred him to a neurosurgeon, who diagnosed the disorder within seconds.
Thai's long road made me wonder what resources are available for people like him, who have a condition that turns out to be something rare and difficult to diagnose, but that does have a treatment. There are some online resources that people can turn to. You can search the National Library of Medicine database for key words related to the condition. For example, the first four results from a search for the words "facial spasm"contained the words, "hemi-facial spasm."
Another place to look is the National Institutes of Health Genetic and Rare Diseases Information Center. These sites can help patients be proactive about finding answers and can serve as starting points to discuss with a doctor in hopes of pinpointing the actual condition.
A couple of other pointers: It's always OK to ask for a second opinion. Another doctor in the same area of specialty might have a completely different diagnosis based on his or her experience and realm of knowledge, so don't be afraid to ask. Also, a patient should examine his or her own family health history with a doctor to identify any possible clues that could lead to a cure.
I hope you find this information helpful. I'm also curious: What other online medical and health resources do you use?
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