When and How to Get a Second Opinion for Multiple Sclerosis
 

As anyone with multiple sclerosis (MS) knows, it’s not a simple condition to diagnose and treat. Many people experience symptoms for years before receiving a definitive diagnosis, and even once MS is confirmed, there can be a dizzying number of factors to consider when deciding on the best course of treatment


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One reason treating MS is more complicated than ever before is the proliferation of treatment options in recent years — a hugely positive development for most people with MS. But with so many drugs

To help navigate this ever-changing landscape, many people with MS turn to an outside specialist to get another perspective on their diagnosis or treatment. While doing this comes naturally to some people, others may find it daunting for a variety of reasons.

Here are some of the factors to consider when deciding whether and how to seek an outside opinion on MS, and why doing so may be beneficial to both you and the doctor you usually see for MS treatment.

Second Opinions More Common as MS Treatment Gets More Complicated
While some people seek a second opinion because they have specific concerns about their MS diagnosis or treatment, this doesn’t have to be the case. “A second opinion is appropriate for anyone who has a major, life-changing diagnosis,” says Robert Bermel, MD, a neurologist at the Cleveland Clinic’s Mellen Center for Multiple Sclerosis in Ohio.

Dr. Bermel notes that the patients he sees for an initial consultation include many people newly diagnosed with MS, as well as those with doubts about an older diagnosis or ongoing treatment. In recent years, he’s noticed an increase in self-referrals — instead of referrals from a neurologist or primary-care doctor — which he attributes, in part, to a growing recognition among people with MS that treating it is more complicated than it used to be.

“The era of more potent MS therapies puts the emphasis squarely on establishing the diagnosis of MS correctly,” says Bermel, since so many decisions rest on an accurate health assessment. While treatments have become more effective, “Some of them have health implications and risks associated with them,” he adds, which are important to consider along with a treatment’s potential benefits.

Mike Knight, a 57-year-old resident of central Indiana, decided to consult an MS expert shortly after being diagnosed with the disease in 2013 — after about a decade of seeing various neurologists because of his symptoms. “When I was diagnosed, there were symptoms that were recently dramatic,” he says. “I wanted to make sure there was another set of eyes on this.”

Finding and Choosing an Expert for a Second Opinion
Knight lives about five hours away from the Cleveland Clinic, which is where he decided to schedule a consultation after doing some research.

“I wasn’t really looking for a second opinion on the diagnosis itself,” he says, but he did want to make sure he was exploring all potential treatment options.

If you’re not sure where to find an MS expert for a consultation, Bermel recommends starting your search online at the National Multiple Sclerosis Society or the Consortium of Multiple Sclerosis Centers. Once you’ve found some possibilities, he recommends also doing some research on any clinic or practice that might be a candidate, looking for the following traits:

A Staff of Several Doctors Having more than one doctor in a practice, Bermel says, allows MS experts to consult with each other on imaging scans, test results, and potential treatments, effectively giving you several extra sets of eyes and opinions on the condition.

A Multidisciplinary Approach It’s not just doctors who can help treat MS, but also dedicated MS nurses, physical therapists, occupational therapists, and other health professionals. By including these fields of expertise, says Bermel, a practice can make sure that you’re getting not just drug treatments, but all aspects of the care that you need.

Participation in Clinical Trials If an MS center or clinic takes part in clinical trials, that’s a good sign its staff is familiar with the latest developments in MS diagnosis and treatment, Bermel says. It may also mean that you can participate in certain trials in the future, if you and your doctor agree that you’re a good candidate and you meet the inclusion criteria for the particular study.

An Open Door to New Patients Some MS practices, Bermel warns, have extraordinarily long wait times for new patients, which can exacerbate any anxiety you’re feeling about your symptoms or diagnosis. “You shouldn’t have to wait six months,” he says. At a dedicated MS center, new patients are likely to be seen more quickly than that.

Maintaining a Relationship With a Consultant MS Expert
Bermel emphasizes that the goal of consulting an outside expert isn’t necessarily to cast doubt on your main doctor’s abilities or determine whether you should switch doctors. Instead, the goal is simply to expand your healthcare team.

“It’s best to have a consultant neurologist who is an expert in the disease, and then a local neurologist who can team up with them to execute the plan and to handle month-by-month management of symptoms,” he says.

Communication between your consultant MS expert and your main doctor is important, says Bermel, and often involves talking on the phone. “Sometimes, just taking five minutes — even when the patient is in front of us — to touch base with their local physician, really goes a long way,” he notes.

Your doctors can also share certain information using electronic medical records, Bermel says, or by sending a letter after a visit to communicate their findings.

Potential Barriers to Getting a Second Opinion
If you decide to see an outside expert, it’s important to call your insurance company ahead of time to find out whether it will cover the visit. Most health plans, Bermel says, will cover certain out-of-network consultations and are likely to give the green light in cases of MS, since the cost of an office visit is so low compared with the cost of most potential treatments.

For Knight, getting his insurance company to sign on to an outside consultation was a breeze. “I called them and said, ‘Here’s what I’m thinking about doing,’ and it wasn’t an issue,” he says.

It’s also unlikely that you’ll need to repeat any tests — such as MRI scans, blood tests, or spinal analysis — when you see another doctor, if you’ve had them done recently. “We can usually give them a very solid opinion based on the locally acquired tests,” Bermel says.

But it’s important to make sure your MS specialist has access to the tests you’ve had done, so make sure to bring these with you, or that your primary doctor's office has sent them directly before your appointment.

For people concerned about their primary doctor’s feelings, “The advice I would give them is to be open about things,” says Bermel, so that they don’t feel like you’re doing anything behind their back. He notes that most neurologists appreciate extra input from an MS specialist, and that if your doctor isn’t keen on working with other doctors, this may be a “red flag” that leads you to reconsider seeing them.

For Knight, deciding to see an MS expert required “simply having the confidence that it’s your health, it’s your problem to own.” Once he came to this realization, he says, he decided that “I may as well just get over unduly worrying about people’s feelings. Really the only person who pays for it is me, if I don’t take that step.”