Then he walked out of the room: A neurologist's misdiagnosis

When Todd Bischoff developed a tremor at age 46, a neurologist diagnosed essential tremor and gave him two prescriptions to fill. "He said to let him know if I wanted to take the medications. Then he walked out of the room without explaining what essential tremor was or telling me anything about the drugs," Todd says. This was the first red flag. Then, when Todd went home and researched the condition, descriptions of Parkinson's disease seemed to fit his symptoms much better. Todd sought a second opinion, and his next neurologist confirmed the diagnosis of young-onset Parkinson's.

Todd's second neurologist sent him to a Parkinson's disease specialist because he felt that the early age of onset warranted special consideration. Although he had to pay out of pocket, Todd ultimately received his care from a movement disorder subspecialist because he felt that the doctor's expertise and superior level of skill were worth it. "I'm much more confident in dealing with my condition now and know that if I have questions, my neurologist is available to assist me," he said.

Todd believes teamwork is critical for those dealing with a progressive neurodegenerative disease. "This is your health we're talking about – you have to advocate for yourself. If you don’t, you could potentially suffer from poor care, or even the wrong care," he says. "You need to solidify your diagnosis so you know exactly what you're dealing with. Otherwise, how can you most effectively treat what you have?!"

Todd runs a support group (PDTalks.com).

Advice: If you don't have confidence in the diagnosis, get a second opinion.

Browse for related stories in the index at the very bottom of this page, or read a second opinion story.

Thanks to Dr. Orly Avitzur for the source article in the November/December, 2007 issue of Neurology Now.