Second Opinions for Multiple Sclerosis: When Are They Advisable?
The decision of whether or not to seek out a second opinion during medical procedures or diagnoses is often uncertain, and many struggle to understand when or how to get one. It is important to follow these guidelines for attaining expertise from an multiple sclerosis specialist, while still consulting a primary doctor and attending regular appointments.
Complexity of MS
Those with multiple sclerosis, as well as their caregivers and loved ones, are aware that it is an endlessly complicated disease when it comes to both diagnosis and treatment. For some, symptoms are dealt with for many years before they even receive a diagnosis.
Even after the diagnosis, the journey does not become much more straightforward. There are still thousands of questions when it comes to how to form your personal best course of treatment. While the increase in the number of treatment options available to patients is positive and life changing, it also makes decisions more complicated and challenging. What drugs should be taken? Do they work well with my course of therapy? Am I using the right one? Does my caretaker have the necessary expertise for this regimen to be effective? These are all questions that those confronting their MS battle with on a daily basis.
Because it can be difficult to make these decisions on your own, many decide to solicit the assistance of a specialist, in order to get another perspective and opinion on the diagnosis and treatment options they have received. This is something that is easy for some people to do, but others struggle with the concept of attaining a second opinion. In some circumstances, it is alright not to get a second opinion, but in others it is crucial.
Why second opinions can help with complex options for treatment
The unfortunate fact is not everyone who is plagued by a serious disease has a medical degree. This means you aren't always going to understand the names and treatments your doctor throws at you, and while they should do their best to explain it in a comprehensive manner, you may still want assistance from an outsider as well. This is especially true as treatment options become increasingly complex.
Robert Bermel, MD, is a neurologist at the Cleveland Clinic Mellen Center for Multiple Sclerosis in Ohio and has confirmed "a second opinion is appropriate for anyone who has a major, life-changing diagnosis." Of course, second opinions are applicable when someone has a specific question or concern with any part of their medical treatment, but the simple diagnosis itself is also a valid reason to receive a second opinion.
Dr. Bermel's patients are often those who have been newly diagnosed with MS or those who have doubts about the diagnosis they received in the past, or concerns about their treatment. He has noticed that in the last few years, as options for treatment increase dramatically, instead of referrals from a primary-care doctor or neurologists, more patients are resorting to self-referrals. He explains why he suspects this to be the case, "the era of more potent MS therapies puts the emphasis squarely on establishing the diagnosis of MS correctly. Some of them have health implications and risks associated with them." Needless to say, people want to be sure that the diagnosis they receive is correct before they begin intensive treatment that may have serious side effects.
An example of such a situation was when Mike Knight, who is a 57-year-old central Indiana resident, decided to consult an expert in the field after being diagnosed. He explains the situation, "when I was diagnosed, there were symptoms that were recently dramatic. I wanted to make sure there was another set of eyes on this." Knight's experience is increasingly common, and is a good idea for anyone who has doubts or insecurities.
How to find your specialist
Even if you have made the decision to seek out a second opinion, you may still be having trouble finding the right expert. Bermel has recommended to begin on the internet on the website of the National Multiple Sclerosis Society or the Consortium of Multiple Sclerosis Centers.
From there, you should have a short list of possibilities near you. After this initial research, it is also important to look up more about each selection and look for the following:
An open door to new patients
Certain MS practices have extremely long wait times, which may want to be avoided as you likely want to receive a second opinion in a timely manner.
A multidisciplinary approach
Nurses, physical therapists, occupational therapists, and other health professionals are crucial in treating MS, so make sure you're looking at a practice that is not solely focused on drug treatments and specific doctors.
A staff of several doctors
Multiple doctors is a benefit because it enables experts to consult with one another on many aspects of your treatment, from imaging scans to test results. After all, you are seeking a second opinion.
Participation in clinical trials
Participation in clinical trials shows that the staff at the center or clinic is familiar with the most recent innovations in both diagnosis and treatment. Of course, it also means you may have the opportunity to participate in a clinical trial yourself, should you be interested and a good candidate.
Expanding your healthcare team
Bear in mind that seeking a second opinion, does not mean that you are abandoning your main doctor; it simply means that you are expanding your healthcare team.
Bermel explains, "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."
It is not only important for you to maintain communication with your entire healthcare team, but for the different members of the team to speak to each other. Bermel gives insight into his relationships with other doctors, "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." Also, it is increasingly easy for doctors to communicate information to each other via electronic medical records.
Before getting a second opinion
Of course, there are certain barriers to getting a second opinion. Make sure, before you make an appointment, to call your insurance company to see if the visit will be covered. Bermel mentions that most plans will cover certain consultations, even if they are out of network. Knight confirms this experience with his insurance company, "I called them and said, 'Here's what I'm thinking about doing,' and it wasn't an issue."
Simply make sure that the specialist you are seeing has access to tests you have already had taken by bringing them with you or having your primary doctor send them beforehand.
Some people are concerned about their primary doctor's feelings when seeking a second opinion, but Bermel explains that you should simply be open with each doctor to avoid any issues and get the best care possible. At the end of the day, the most important thing is your health.
