One day in 1994, Brad Ingram, who was a healthy 15-year-old and a sophomore in high school, had a sudden seizure that lasted 30 minutes. Soon after that episode, Ingram was diagnosed with epilepsy and prescribed medication. He was also told by his neurologist that his career options were limited, and he'd never be able to live on his own. He and his parents were stunned. Before his diagnosis, Ingram had been focused on getting a driver's license and going to college. He had dreamed of becoming a doctor and getting married and having children one day. After his diagnosis, he began to reassess those dreams.
Despite that bleak prediction, two years later Ingram started college, where he continued to have seizures. His neurologist increased the dosage of his medication, but it didn't help. During one seizure, he walked around campus in a daze, going in and out of classrooms that weren't his until he collapsed and started shaking. Luckily, the seizure happened outside a student health clinic, where a group of fraternity brothers saw him and carried him in.
From there, he was airlifted to an emergency department, where he met an epileptologist—a neurologist who specializes in epilepsy—who explained that his medication wasn't appropriate for his type of epilepsy. She prescribed a new drug, and Ingram has not had a seizure since. The neurologist also asked him what he wanted to do after college. Ingram said he had hoped to go to medical school but was told it was impossible because of his condition. “Then she said something to me that I have carried with me ever since,” says Ingram. “She said, ‘You have epilepsy, but you cannot let it have you.’” Ingram walked out of the epileptologist's office that day with two things: a sense of control and a new outlook on his future.
He did eventually graduate from medical school. Now 43, he is an epileptologist himself. “I saw several other neurologists after my initial diagnosis, but I can trace who I am and how I understand my diagnosis all the way back to that second opinion I got in the emergency department,” he says. “I think the difference was that she was passionate about taking care of patients with epilepsy.”
Most people's experiences of seeing a different doctor don't play out as dramatically, but Ingram's story illustrates why medical experts say seeking a second opinion is often a good idea. In Ingram's case, that consultation with an epileptologist in the emergency department resulted in more specialized and targeted care. In other cases, it may reverse a misdiagnosis. A study published in 2017 in the Journal of Evaluation in Clinical Practice found that in 21 percent of cases, second opinions resulted in final diagnoses that were distinctly different from the original diagnoses.
In the case of neurology patients, most get a diagnosis confirmed or a different treatment plan rather than a completely new diagnosis, says Alexander A. Khalessi, MD, MBA, professor and chair of neurologic surgery at the University of California San Diego School of Medicine and founder of the Online Second Opinions for Neurosurgery program at UC San Diego Health.
It isn't always obvious when a second opinion is warranted, but neurologists say the following scenarios call for one.
“I would encourage anyone facing a serious diagnosis to get a second opinion,” says Mark L. Graber, MD. “There's too much at stake and so little to lose.”
A New Diagnosis
Neurologic diseases are complex, and how they will affect patients' lives is hard to predict. If a primary care doctor or a general neurologist makes the diagnosis, it may be worth consulting a neurologist who specializes in a specific condition, such as Ingram did when he was seen by an epileptologist. Specialists may provide more details about the diagnosis and how it may play out, says Demetrius M. Maraganore, MD, FAAN, chair of the department of neurology at Tulane University School of Medicine in New Orleans. “Some of the most difficult neurologic diagnoses are early-onset Alzheimer's, Parkinson's disease, amyotrophic lateral sclerosis (ALS), and glioblastomas,” he says. “These conditions generally have a course that varies from patient to patient, although the outcome is expected ultimately to be poor.”
“I would encourage anyone facing a serious diagnosis to get a second opinion,” agrees Mark L. Graber, MD, a former Veterans Affairs internal medicine physician who founded the Society to Improve Diagnosis in Medicine after he realized many of his patients were initially misdiagnosed. “There's too much at stake and so little to lose. It may cost more or be inconvenient, but it's for your health and well-being.”
For conditions with few treatments and poor outcomes, Dr. Maraganore recommends that patients get a second opinion from a doctor who could refer them to a clinical trial for an emerging therapy. Dr. Maraganore, an Alzheimer's disease expert who is often consulted for second opinions, has made these referrals himself. After meeting a young patient with early-onset Alzheimer's disease due to a specific genetic mutation, Dr. Maraganore sent the patient to a doctor who is running clinical trials involving patients with this mutation. “None of us is above needing assistance from time to time from a colleague,” he says.
Surgery or High-Risk Medication
If surgery is presented as your only option, it's time for a second opinion, says Katherine H. Noe, MD, PhD, FAAN, associate professor of neurology at Mayo Clinic in Phoenix. This is especially true for people with epilepsy, who are usually treated with medication before surgery. “Surgery for epilepsy would meet the definition of a very complex problem involving many nuanced decisions,” Dr. Noe says. “A lot depends on the experience of all members of the care team. It's high stakes because you're talking about an elective brain surgery.”
If a drug that can cause serious side effects is recommended, consult another doctor, advises Dr. Maraganore. Ask the other expert if the benefits outweigh the risks, he says. A good example is aducanumab, a newly approved drug for Alzheimer's disease that can cause bleeding and swelling in the brain.
Unsatisfactory Care
“Time is brain,” says Ajay Gupta, MD, head of pediatric epilepsy at the Cleveland Clinic in Ohio, who explains that many neurologic diseases require early and effective treatment to prevent brain function from deteriorating, sometimes irreversibly.
This is especially true for children with epilepsy. Dr. Gupta says about two-thirds of patients who are referred to him have epilepsy that is very difficult to treat. He helps families consider options they haven't tried yet.
“If a child has not responded to various medications, you should probably get another opinion, because epilepsy is a very serious disease, with significant long-term costs in terms of a child's development and cognition,” he says.
Getting another medical opinion helped Maceo Carter, 47, manage his ALS. A software-test technician with Shutterfly, Carter was first diagnosed in 2016, when his doctor told him he had about two to five years to live. The father of four felt hopeless and adrift. Although the care he received was competent, he felt his doctor wasn't invested in helping him maintain his quality of life. Carter and his wife did their own research and eventually consulted an ALS specialist at Mayo Clinic in Phoenix, who, unlike the two previous neurologists he saw, referred him to supportive services that have helped him make the most of the time he does have. Carter was so impressed that he relocated his family from North Carolina to the Phoenix area.
At Mayo Clinic he regularly meets with speech therapists, physical therapists, and occupational therapists, in addition to his neurologist. He appreciates that his care team is supportive of his decision to use medical marijuana to relieve leg pain related to his illness, and that the clinic has an affiliation with the ALS Association, which has helped him obtain various pieces of medical equipment. It also provides social programs for him and his family. “We've been to baseball games and other outings, which have helped me mentally as well as physically,” Carter says. “Although I have this diagnosis, I can really live. When my legs began to weaken, for example, I was offered a wheelchair.”
More Information Needed
Sometimes a primary care doctor or general neurologist doesn't have the knowledge, training, or expertise your condition requires. In that case, seek another medical opinion, says Anup D. Patel, MD, FAAN, section chief of neurology and director of epilepsy at Nationwide Children's Hospital in Columbus, OH. “A specialist often can fill in gaps in knowledge and understanding of a particular condition. Or maybe you hear the same thing and it comforts you,” Dr. Patel says. “That is valuable and worth your time.”
Seeing a second neurologist reassured 43-year-old Dawnia Baynes that her multiple sclerosis (MS) diagnosis was correct. In 2004, Baynes, who was a customer service associate at a printing and copy company at the time, noticed that when she tried to walk straight, it felt as if she were walking to the right. Her primary care physician didn't think anything was wrong. Two years later, Baynes woke up and her body was numb from her chest down. She went to an emergency department, where she was referred to a neurologist who diagnosed her with MS. But Baynes was skeptical because she didn't think MS could affect people her age. Her mother convinced her to travel from her home in Atlanta to Los Angeles to see an MS specialist at UCLA Health. The specialist confirmed she had relapsing-remitting MS. Although her condition has worsened—she no longer works and is on disability—she appreciates that she is receiving expert care.
“Many people said things to me like, ‘How do you know it's not lupus or Lyme disease?’” says Baynes. “Having another opinion helped me stop second-guessing myself.'”
As for Dr. Ingram, who is associate director of pediatric epilepsy at the University of Mississippi Medical Center in Jackson, he encourages his own patients to get second opinions and often refers them to other specialists. He credits the second opinion he got from the epileptologist he met in college for changing the course of his life. “She gave me a future that wasn't dominated by my condition,” he says.
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