Although a seasoned hospice nurse, Brenda Burroughs never liked going to the doctor’s office herself. So, even though she’d lived for years with vague indications that something was wrong with her nervous system, she found it easy to explain her concerns away. “The symptoms I had were very vague—I could just chalk them up to Oh, I’m just really tired or I’m just a clumsy person—I don’t walk straight,” she remembers.
But about eight years ago, when she was 49, things changed. Right before Thanksgiving, her right thumb and index finger went numb. Then it was the next finger, then all of her fingers. The next day her whole hand was numb, then her arm, and then her shoulder. Then her toes went numb. All this was accompanied by fatigue like she’d never felt before. When she couldn’t lift her Thanksgiving turkey into the oven, she finally called a neurologist.
A magnetic resonance imaging (MRI) scan of her brain showed the hallmark scarring of multiple sclerosis, often known by its abbreviation, MS. MS is an autoimmune disorder, where the body’s immune system mistakes some of its own cells for a threat such as a virus and attacks them.
In MS one of the main mistaken targets is myelin, the protective coating of the body’s nerve cells, found throughout the brain and spinal cord. Mary Rensel, MD, a neuroimmunologist at the Cleveland Clinic’s Mellen Center for Multiple Sclerosis Treatment and Research, likens myelin to the insulation around a lamp cord. If the insulation gets damaged, the electrical signal can’t travel from the socket to the lamp and the light won’t turn on. Similarly, if the immune system chews through the myelin on a group of nerve cells, those nerve cells can’t transmit the information they receive, and some part of the body will malfunction.
An Individual Disorder
Because the nerves in the brain and nervous system that are damaged by MS can vary widely among patients,1 the disorder’s symptoms are also highly individual. “If you meet 100 patients with MS, you’ll see 100 different forms of MS,” Dr. Rensel says. Some of the more common symptoms include the fatigue, numbness, tingling, weakness, and balance problems that Brenda experienced, as well as blurred vision or vision loss, difficulty concentrating, and bladder or bowel issues.
Women are about three times as likely as men to be diagnosed with MS.2 The disorder tends to strike relatively early in life, with most patients first experiencing symptoms between the ages of 20 and 40.3 When Brenda finally received the diagnosis in her late forties, the neurologist told her, based on the damage shown on her MRI, that “I had actually had it for 15 to 20 years before I was diagnosed,” she says.
What causes MS—what drives the immune system to attack myelin—remains unclear. The disorder has a genetic component— people with family members who have MS are more likely to develop it themselves—but there is no single “MS gene.”3 The environmental factors most strongly associated with developing MS are smoking and previous exposure to a virus called Epstein-Barr (EBV), the virus that causes mononucleosis.4
But few smokers develop MS, and about 90 percent of adults have been exposed to EBV sometime in their life,5 yet fewer than 150 in 100,000 people in North America4 develop MS every year. EBV does not directly cause MS, explains Dr. Rensel, “and you can’t catch MS from someone.”
Most patients with MS—about 85 percent—have the relapsing-remitting form of the condition;6 that is, symptoms flare up as new damage occurs but then die down again for months or even years. Over time this often develops into secondary progressive MS, where symptoms continuously worsen over time. About 15 percent of patients have primary progressive MS, where the symptom-free periods of relapsing-remitting MS are never experienced.
Though MS is estimated to shorten a person’s life expectancy by only five to 10 years, its impact is great in terms of disability, loss of employment and productivity, and medical costs.7
Modifying the Course of Disease
Some good news for people diagnosed with MS is that the past few decades have seen a revolution in therapies for the disorder. Before 1993 not a single drug was available that could alter the course of MS.7 There is still no cure, but today 13 so-called disease-modifying therapies are on the market8—drugs that target the misfiring immune system and that, when given early to patients with relapsing-remitting MS, can potentially reduce the number of relapses and slow the march toward progression (see sidebar “FDA-Approved Therapies for Relapsing-Remitting MS”8). Several drugs approved since 2010 come in pill form7 instead of the daily self-injections required with older medications.
Sometimes patients—especially those with mild MS who largely feel fine day to day—are reluctant to start a disease-modifying therapy right away, says Dr. Rensel: “Some people want to try diet or lifestyle [changes] or stress management, which are also superimportant with multiple sclerosis, but I would say, Why not use all the tools in the tool box? because the chance that multiple sclerosis may lead to some kind of neurological disability is high.” Early treatment has been shown to be associated with a reduction in the progression of disability for patients with relapsing-remitting MS.9
It is important, she adds, to balance the risk of relapse and progression for each patient with the potential side effects of the medications. The newer, more potent drugs have higher risks of side effects, including damage to the liver and white blood cells, which require consistent monitoring,7 but they may have particular benefit for people with MS at high risk of frequent relapse.
Keeping a patient’s MS under control while managing side effects may require changing medications more than once. “We tell patients that…the decision we make today [about medication] isn’t a decision for their whole life,” says Dr. Rensel. Brenda is currently talking with her doctor about trying her third medication since diagnosis. The first one worked for a while but eventually stopped suppressing the MS, and the other eventually caused her white blood cell count to drop too low.
A factor for some women with MS to consider when talking with their doctors about disease-modifying therapies is pregnancy. Because MS is often diagnosed in a woman’s child-bearing years, “a lot of times it’s on people’s minds very early in the course of the disease,” says Dr. Rensel. Though women with MS do not have any specific trouble with conception, pregnancy, and delivery, one of the newer drugs has the potential to cause birth defects, and the safety of several others is unclear, making careful planning around pregnancy vital.
In addition to disease-modifying therapies, other treatments exist—both drugs and nondrug interventions—that help patients manage MS symptoms. “This is important because often people have the expectation that a [disease-modifying therapy] is going to make them feel or function better, and they become discouraged and stop treatment when it doesn’t,” says Barbara Giesser, MD, a neurologist at the University of California, Los Angeles, who specializes in multiple sclerosis.
An aspect of MS treatment that has undergone a huge recent shift is how doctors view the role of exercise for MS patients.10 “Back in the bad old days, people with MS were told, ‘Don’t exercise; take it easy.’ If you could have picked the one single worst thing we could have told them, that would probably have been it,” says Dr. Giesser.
Fortunately, “the pendulum has swung completely in the opposite direction for a couple of reasons,” she says, with doctors now strongly advocating physical activity for MS patients. One reason is that not exercising puts people at risk for other health problems, some of which, like high blood pressure, are in turn associated with worsening MS—a vicious circle.
Another reason is that “exercise has been shown to improve certain symptoms of MS, including fatigue, depression, and spasticity,” says Dr. Giesser. “And I think what’s most exciting is that we’re starting to get some information that exercise may actually improve cognitive performance in people with MS, as well. Problems with memory, thinking, and cognitive processing can affect about 50 percent of people with MS, and right now we don’t really have good pharmacologic treatments for that,” she adds.
People with MS can overheat easily during exercise, and this overheating can temporarily exacerbate MS symptoms, although permanent damage is not being done.11 Dr. Giesser tells her patients to do things like exercise under a fan, drink cold liquids, and use cold cloths: “employ cooling strategies— but exercise.”
Physical rehabilitation, such as physical therapy, occupational therapy, cognitive therapy, and speech therapy, is also “superimportant” for patients with MS, says Dr. Rensel. Several rehabilitation interventions have been shown to decrease disability and improve participation in daily activities and quality of life for patients with MS.12
Much work by MS researchers remains to be done, as drugs that work to slow or stop progressive MS are desperately needed. Researchers are also looking for ways to coax the body to repair damaged myelin, using stem cells or so-called remyelenation therapies, which ramp up the body’s natural healing mechanisms.
For now Brenda encourages newly diagnosed patients to find the most experienced doctors they possibly can. “When you’re newly diagnosed, you don’t know what [questions] to ask,” Brenda says. She recommends finding a neurologist who specializes in MS: “that all they do is treat MS patients. It’s worth a drive to have someone who knows MS inside and out and can better focus on what’s going to work for you.”
Resources for More Information On MS
- National Multiple Sclerosis Society, nationalmssociety.org
- National Institute of Neurological Disorders and Stroke, nih.gov/disorders/multiple_sclerosis/multiple_sclerosis.htm
- Multiple Sclerosis Association of America, mymsaa.org
FDA-Approved Therapies for Relapsing-Remitting MS8
- Wagner CA, Goverman JM. Novel insights and therapeutics in multiple sclerosis. F1000Research. 2015;4(F1000 Faculty Rev):517. doi: 10.12688/f1000research.6378.1.
- Dunn SE, Lee H, Pavri FR, Zhang MA. Sex-based differences in multiple sclerosis (part I): Biology of disease incidence. Current Topics in Behavioral Neurosciences. 2015;26:29-56. doi: 10.1007/7854_2015_371.
- Hemmer B, Kerschensteiner M, Korn T. Role of the innate and adaptive immune responses in the course of multiple sclerosis. Lancet Neurology. 2015;14(4):406-19. doi: 10.1016/ S1474-4422(14)70305-9.
- Belbasis L, Bellou V, Evangelou E, Ioannidis JP, Tzoulaki I. Environmental risk factors and multiple sclerosis: An umbrella review of systematic reviews and meta-analyses. The Lancet Neurology. 2015;14(3):263-73. doi: 10.1016/S1474-4422(14)70267-4.
- McKay KA, Tremlett H. The systematic search for risk factors in multiple sclerosis. The Lancet Neurology. 2015;14(3):237-8. doi: 10.1016/ S1474-4422(15)70015-3.
- McKay KA, Kwan V, Duggan T, Tremlett H. Risk factors associated with the onset of relapsing-remitting and primary progressive multiple sclerosis: A systematic review. BioMed Research International. 2015;2015:817238. doi: 10.1155/2015/817238.
- English C, Aloi JJ. New FDA-approved disease-modifying therapies for multiple sclerosis. Clinical Therapeutics. 2015;37(4):691- 715. doi: 10.1016/j.clinthera.2015.03.001.
- The Importance of Long-Term Treatment for Multiple Sclerosis. Multiple Sclerosis Association of America website. Available at http://mymsaa. org/ms-information/overview/long-term-treatment. Accessed April 19, 2016.
- Farber RS, Sand IK. Optimizing the initial choice and timing of therapy in relapsing-remitting multiple sclerosis. Therapeutic Advances in Neurological Disorders. 2015;8(5):212-32. doi: 10.1177/1756285615598910.
- Giesser BS. Exercise in the management of persons with multiple sclerosis. Therapeutic Advances in Neurological Disorders. 2015;8(3):123-30. doi: 10.1177/1756285615576663.
- Heine M, van de Port I, Rietberg MB, van Wegen EE, Kwakkel G. Exercise therapy for fatigue in multiple sclerosis. Cochrane Database of Systematic Reviews. 2015;9:CD009956. doi: 10.1002/14651858.CD009956.pub2.
- Beer S, Khan F, Kesselring J. Rehabilitation interventions in multiple sclerosis: An overview. Journal of Neurology. 2012;259(9):1994-2008. doi: 10.1007/s00415-012-6577-4.