Previous generations of people diagnosed with multiple sclerosis didn’t have many treatment options. The phrase ‘diagnose and adios’ became popular in the MS community for a reason. If new neurologic events occurred, neurologists could offer steroids for relapses but that was about it. Some patients were told not to exercise or have children for fears of making the disease worse, presumptions we now know are incorrect.
In the care of MS, we’ve come a long way. It is now generally accepted that MS is a chronic but treatable disease that requires long-term care from a neurologist. Due to improved diagnostic criteria, better understanding of the disease mechanisms, and multiple disease-modifying therapies, the treatment landscape for MS has become rich and complicated.
Effective disease management that improves health outcomes is vital to maximizing quality of life for MS patients worldwide. As such, it is important for patients to be able to access specialist care from healthcare professionals who have experience and training in addressing the specific needs of MS patients and their caregivers.
In a recent ‘Controversies in MS’ topic series in the Multiple Sclerosis Journal, healthcare professionals argue the pros and cons of specialist care in MS.
Pros for MS specialty care:
- Opportunity to ensure an accurate diagnosis. Rates of misdiagnosis of MS may be as high as 5-10 percent and can have a significant impact on patient care and cost to the healthcare system. Inappropriate or insufficient treatment increase risk to the patient.
- Complex treatment options. There are 14 FDA-approved disease-modifying therapies (DMTs), seven of which have been approved in the past six years alone. These therapies have different mechanisms of action, efficacy and safety profiles, and impact on lifestyle factors of patients. Staying on top of the volume of data related to DMTs is challenging even for the MS specialist, much less a general neurologist.
- Holistic approach to patient care. MS clinics offer improved emotional support and information relevant for better management of the disease, particularly for chronic neurological symptoms that are often unpleasant and affect physical, social, and occupational functioning. A multi-disciplinary team approach can evaluate and address multiple needs for each patients related to physiotherapy, rehabilitation, or even more specialized care such as urology or neuropsychology.
Cons for MS specialty care:
- Distance and access. MS Clinics may not exist near your home in which case a high-quality locally-based service might be better. The argument put forth in the journal discussion was unconvincing and clearly skewed to the situation in the United Kingdom where only seven licensed DMTs are prescribed to MS patients and 29 specialty clinics service about 120,000 MS patients.
But we live in the United States where there are at least twice as many MS speciality clinics per patient than in the UK and we have twice as many treatment options as well. Read any of the number of MS support forums and one of the most common questions posed to newcomers is, “Have you seen an MS specialist?”
Multiple sclerosis is such a complex disease that affects so many different functions that no one physician can be an expert in it all. A multi-disciplinary team approach to treatment and management of the disease is preferred, especially as scientific knowledge and treatment options continue to grow each year.
How can you find an MS specialist?
In the US, we have many MS clinics and neurologists who specialize in multiple sclerosis. Most of these clinics and doctors can be found in a directory maintained by the Consortium of MS Centers (CMSC). We have nurses who choose to become certified by the Multiple Sclerosis International Certification Board (MSNICB). We even have certified physical therapists who specialize in neurological disorders.
The first place I suggest to search for a specialist is through the CMSC directory. A second option is to call the National MS Society (1-800-344-4867) to ask for a list of neurologists in your area. A third option would be to attend any of the many pharma-sponsored dinner presentations that typically feature a neurologist and patient advocate. At one of these dinners you can network with other MS patients in your area, ask about their doctors, and get recommendations. Then after all of this research crosscheck to see if any of these physicians are included in your insurance plan.
See More Helpful Articles:
Brenner R. All relapsing multiple sclerosis patients should be seen in specialist clinics - NO. Mult Scler. 2016 Jun;22(7):875-6. doi: 10.1177/1352458516642855. Epub 2016 Apr 22.
Brownlee WJ, Ciccarelli O. All relapsing multiple sclerosis patients should be managed at a specialist clinic - YES. Mult Scler. 2016 Jun;22(7):873-5. doi: 10.1177/1352458516636474. Epub 2016 Apr 22.
Hutchinson M. All relapsing multiple sclerosis patients should be managed at a specialist clinic - Commentary. Mult Scler. 2016 Jun;22(7):876-7. doi: 10.1177/1352458516646466. Epub 2016 Apr 22.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.