A second opinion for Lou Gehrig's Disease

Gaetan Guertin, a native of Quebec, Canada, sought a subspecialist's opinion after his first neurologist suggested the diagnosis of amyotrophic lateral sclerosis (ALS, or Lou Gehrig's Disease). Gaetan began to experience leg fatigue when he was 55 and soon developed foot weakness and muscle atrophy. In an interview with Neurology Now, Gaetan said the expert's approach was more confident. "She had a lot of experience and knowledge and was more open,” he said. He added that since the neurologist worked at a research and training hospital, the diagnostic testing could proceed more promptly.

Advice: If you're unclear about a diagnosis, consider getting a second opinion.

Browse for related stories in the index at the very bottom of this page, or read a story about a man with Lou Gehrig's disease.

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

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.

Now they take pictures at Disneyland, not to Disneyland: Personal Health Record

Aaron Walbert is a teenager living in Colorado Springs, an hour and a half from his doctors. He has vacationed in northern Minnesota and in Disneyworld. He can use a computer like most members of his generation.

He has an exceptional past: in his fourth day of life, he suffered a stroke, and developed hydrocephalus. Since then, he has undergone numerous operations to drain the excess cerebrospinal fluid, via a shunt. While on vacation several years ago in northern Minnesota, he began complaining of headaches and nausea, making his mother worry that his shunt had malfunctioned. At the hospital in Duluth, two hours away, no one could retrieve his chart from his Colorado hospital. He had to drive 3.5 hours away to another hospital so a neurosurgeon could determine whether surgery was needed. Over time, his mother has realized there are many false alarms, because everything from the flu to a poor night’s sleep can mimic the failure of a shunt. Even so, she began to lug around the large, heavy envelopes of radiology films wherever they went, out of concern that the shunt could fail at any time.

But this hasn’t been necessary for the last two years. The Walberts acquired an electronic personal health record (PHR), so they could access his health records anywhere. If Aaron gets sick far from home, doctors at the nearest hospital can download his latest MRI scan for comparison. And they could have anything else in his medical record at their fingertips. That was helpful two years ago, when Aaron got sick at home. Mom took him to a local radiology office for a brain scan, and had it compared to the most recent scan, available online via the PHR. When the doctor realized the scan was unchanged, Mom could bring him home without worry, without making the long drive to his hospital.

Advice to rural families with complex medical needs: Get a Personal Health Record. Having your up-to-date medical information on hand anywhere can be a godsend.

Read a story of how a wife’s medical information on her husband saved him, or read Dr. Orly Avitzur’s story in Neurology Now.