My good friend and colleague Dr. Rosalind Kalb, a clinical psychologist who has devoted her career to helping people with multiple sclerosis (MS), refers to the disease as “the uninvited guest.” MS arrives unannounced and unexpected, usually when people are just beginning their adult lives with careers and families. Developing a chronic, unpredictable neurologic condition is the furthest thing from their minds.
Of course, there’s never a “good” time to be diagnosed with MS, but now is a more hopeful time than ever. Diagnosis is much quicker and more accurate. Powerful medications are available to modify the natural course of the disease. Unlike in the past, MS can’t just do what it wants anymore.
Other treatments, pharmacologic and lifestyle related, can ease most symptoms and improve the way you feel and function. Additionally, researchers are on the cusp of developing treatments that could eventually repair damaged nerves.
Researchers and neurologists also are learning more about how lifestyle affects people with MS. Standard medical treatment is necessary, but it must be paired with a healthy diet, physical activity, and stress management—and quitting or never smoking. As I tell my patients, this combination is your firewall against disease progression.
Most people diagnosed with MS in the 21st century go on to lead very full and productive lives. I’ve known patients who obtained their doctoral degrees, started businesses, gave birth and raised children, ran marathons, and even one who climbed Mt. Everest—all post-diagnosis!
The important thing to remember is not to go it alone. Partner with your health care provider(s) to develop a treatment plan that works best for you. Take advantage of all the educational materials available, including on BrainandLife.org and in publications from the National MS Society and the Multiple Sclerosis Association of America. Consider joining a support group and be sure to develop and maintain a network of friends and family who can help you.
Don’t be afraid to rely on others and to be candid about your situation—even when they can’t see what’s going on. In fact, some of the more troublesome aspects of MS are the so-called invisible symptoms such as pain, fatigue, depression, and anxiety. Often, they interfere the most with the ability to function, but because they aren’t obvious to an observer, they may be the hardest to explain. An otherwise sympathetic partner may not be able to appreciate that MS fatigue can make you too tired to move, literally, and may think you’re trying to avoid shared responsibilities. Fortunately, all these symptoms are treatable, with a combination of appropriate medications and other strategies, so it’s important to report them to your health care provider.
I often counsel my patients to think of living with MS as a marathon. It takes planning, fortitude, and endurance. We hope this special issue devoted to MS will help prepare you for that journey.
Barbara Giesser, MD, FAAN, FANA
Issue Editor
