Doctor’s Wish List Cites Five Things To Do for People Dealing with Multiple Sclerosis
By Ben Thrower, M.D.
Medical Director, MS Institute at Shepherd Center
Managing multiple sclerosis (MS) has come a long way from the days of having very little to offer to now having a toolbox full of treatment options.
MS management can be divided into three areas: relapse treatment, symptom management and disease modification. Before 1993, there really were no great options in the area of disease modification. Fortunately, we do have options now.
Currently, there are 10 FDA-approved, disease-modifying therapies for MS. The goal of these disease-modifying therapies is to prevent relapses and new lesions on MRI while also slowing progression of disability.
MS is a lifelong illness. The successful management of MS requires a partnership between the healthcare team and the person with MS. As a physician who focuses on the management of MS, here is my wish list for people dealing with MS:
- Have realistic treatment expectations. Disease-modifying therapies do not reverse the symptoms of MS. They are best thought of as like an insurance policy to help prevent future problems. Even when a person with MS is “stable” or in remission, they will still likely have baseline symptoms. These symptoms can be managed, but that is not the goal of a disease-modifying therapy. Ideally, these treatments would stop all progression in every person with MS. For some, this does happen, while for others, the treatment slows, but does not completely halt, progression. This is always a tough situation. Decisions will need to be made about whether switching to another treatment would perhaps lead to better disease control.
- Be honest about your medication use. Strangely, these therapies seem to work best when they are actually taken, not just left in the cabinet or refrigerator. If you are struggling with side effects or just don’t like the medication, let your doctor know. Also, if you are having trouble affording your medications, let someone know. Many times, financial assistance is available.
- Keep your follow-up appointments, including MRIs, if they are ordered. My goal for a person’s MS is that it becomes boring. That means that MS is a part of the person’s life, but is not ruling the person’s life. Sometimes, when MS has become boring, there is a tendency for the person to skip follow-up appointments. Complacency is not good. We do a better job in MS with preventing problems before they arise as opposed to correcting them afterward.
- Don’t neglect your health. Just because a person has MS, it does not mean they won’t have other health problems. Have a good primary care doctor. If you smoke, stop. Studies have linked tobacco use with a higher risk of MS and worsened MS activity in those already diagnosed. Get into an appropriate exercise program. Many symptoms of MS, like fatigue, are improved with regular exercise.
- Bring support to your appointments. MS can be a scary diagnosis, especially early on. A lot of information is presented at an appointment. It helps to have another set of ears to hear things and remind you of issues to be discussed. Consider making a question list with the most important issues at the top of the page.
Other healthcare providers may be able to add to my wish list, and I’m sure people with MS and their families have their own wish list. Here’s looking forward to a day when our ultimate wish, a world free from MS, is met.
For more information on MS treatment at Shepherd Center’s MS Institute, visit shepherd.org/ms.
BEN THROWER, M.D., is the medical director of the Andrew C. Carlos MS Institute at Shepherd Center in Atlanta. He previously served as the medical director of the Holy Family Multiple Sclerosis Institute in Spokane, Wash. In Spokane, he was the chair of the Inland Northwest Chapter of the NMSS. In 2000, he was awarded the Norm Cohn Hope Chest Award by the National MS Society, recognizing his work with the MS community. In 2005, he was the first physician inductee into the Georgia Chapter of the National MS Society Volunteer Hall of Fame. Dr. Thrower is a clinical instructor of neurology at Emory University and participates actively in clinical research. He serves on the board of directors of the Georgia Chapter of the National MS Society and has served on the board for the Consortium of Multiple Sclerosis Institutes.
Shepherd Center provides world-class clinical care, research, and family support for people experiencing the most complex conditions, including spinal cord and brain injuries, multi-trauma, traumatic amputations, stroke, multiple sclerosis, and pain. An elite center recognized as both Spinal Cord Injury and Traumatic Brain Injury Model Systems, Shepherd Center is ranked by U.S. News as one of the nation’s top hospitals for rehabilitation. Shepherd Center treats thousands of patients annually with unmatched expertise and unwavering compassion to help them begin again.