Multiple Sclerosis, often referred to as MS, is a disease that is difficult to diagnose and extremely hard to predict. MS is a condition in which the body’s immune system attacks the myelin sheath covering our nerve fibers (think of the rubber coating on a copper wire), resulting in damage to the central nervous system. Symptoms vary widely, making diagnosis problematic.
The name is derived from the multiple areas of nerve damage that occur, coupled with the sclerosis, or hardening and scarring of nerve tissue. The course and progress of the disease varies significantly from patient to patient. Research has revealed correlations in a number of factors that are often present in the histories of MS patients, but cause-and-effect relationships have yet to be established. MS can be progressive, leaving affected individuals with significantly greater damage after each bout of symptomatic recurrence, or of a relapsing nature that waxes and wanes, yet gradually debilitates. For people with MS, it becomes increasingly difficult to get through each day.
Significant, new medical research promises more effective medicines and, if not an eventual cure, better treatment.
Sandra
Sandra was diagnosed with MS twenty years ago. A gifted athlete, Sandra was well on her way to becoming a professional golfer when she experienced a disturbing sensation of numbness in her legs. The numbness persisted, and Sandra consulted doctors for relief. However, the doctors could find nothing wrong. Subsequently, small, increasingly frequent symptoms showed up, including problems with gait, balance and unusual fatigue. Sandra went back to doctors again and again, but no diagnosis was made until years later, when a spinal tap revealed the truth. Sandra had MS. An MRI showed lesions on Sandra’s nerve tissue. She had trouble concentrating, and she began to experience involuntary muscle contractions, especially at night. Sandra has relapsing MS, and between relapses that they term exacerbations, she found that she could continue to work and perform most of her daily activities. During exacerbations, her life was on hold. Her husband found that he could not handle the physical and emotional stress of living with a person with MS, and the marriage ended. Sandra’s mother moved into the caretaker role, assisting her daughter in her struggle to manage both the disease and the effects of intravenous steroid treatments. Sandra and her mother attended education sessions sponsored by the National Multiple Sclerosis Society (NMSS). Although they found these sessions helpful, it was difficult for Sandra to handle being with people whose symptoms were even more pronounced than her own. For Sandra, who was accustomed to a strong and well-coordinated body, it was a very long journey to acceptance.
As time passed, new drugs appeared in the treatment of MS. The new medications were easier to handle, and Sandra found that she could continue to work and function after the injections. As she learned more about her disease, she also learned to cope with its effects. The strength and determination that had made her a star athlete was still with her, and she put it to good use. Today, Sandra works full-time and continues to play golf. She compensates for her difficulties with fatigue and balance by riding rather than walking the course. MS causes sensitivity to heat, so Sandra takes ice packs along to keep cool while golfing. Eventually, she met a wonderful man whose nurturing nature allowed him to accept Sandra’s challenges, and the two eventually married.
Sandra’s story is similar to that of many people with MS. Since it can manifest in a wide variety of symptoms, it is difficult to diagnose. Diagnosis usually follows a long period of mysterious problems that prompt doctors to perform test after test, ruling out a long list of more likely conditions. Early complaints commonly include fatigue, loss of strength and coordination, difficulty concentrating and visual disturbances. MS occurs more frequently in women than in men, and symptoms appear most often between the ages of 20 and 50, although both younger and older persons may develop the disease. Worldwide, MS is thought to affect more than 2.5 million people, according to NMSS . No two people with MS will have exactly the same set of symptoms or pattern of relapse and remission. MS is not directly genetically inherited, nor is it contagious. Most people with MS live a normal or near-normal life span, and many of them are able to continue to work and engage in the activities they enjoy.
Kim
Kim is another MS patient. Her experience with the disease began when she noticed an annoying difficulty with her vision. Increasingly, everything in her field of vision seemed to be ‘snowy’, or ‘fuzzy’, much like the image on a television with poor reception. She consulted an ophthalmologist, who tested her vision and could find nothing wrong. The problems with seeing continued. Doctors found that Kim had high blood pressure. She developed sensitivity to light, and consulted a neurologist. The new doctor discovered that Kim had lost her lower left field of vision completely. A subsequent MRI revealed lesions in Kim’s optic nervous system, and the diagnosis was complete. Kim had MS.
Like Sandra, Kim began a course of IV steroid treatment. Kim explains that steroids do not cure MS, but they reduce the inflammation that accompanies it, calming the nervous system and lessening symptoms. She also switched to injected medicines when they became available, and has found newer medications to be even better. Kim also has a relapsing-remitting form of MS. She describes the progression of nerve damage as a result of permanent harm to the nerve after an attack on the myelin covering. If the nerve tissue could be helped to heal properly after an attack, Kim says, function would be restored, and that is where much MS research is currently focused.
Kim’s husband assists her with day-to-day activities that she finds difficult, especially cooking. Sensitivity to heat makes it very hard for her to work near the oven or heat surfaces, so Kim sticks to the prep work while her husband mans the stove or grill. Fatigue is also a big problem, so although she can walk, Kim often uses a wheelchair to conserve her strength when she is out in public. She finds shopping to be particularly challenging. The bright lights and stimulating colors, sounds, and movements of stores are stressful. Kim plans short, focused trips so that she can shop successfully. MS affects family members of affected persons significantly, in that some degree of care giving is usually required. When insufficient help is available in the home, MS patients often live in nursing facilities. Local chapters of NMSS offer support groups and information that can help families keep their loved ones living at home or find the best care facilities if that becomes necessary.
MS is a very expensive disease. According to the ‘MS Connection’ newsletter (Wisconsin chapter of NMSS, Spring 2009 issue, p12):
“In large part because MS is such a complicated disease, it is also incredibly expensive. Add up the doctor bills and medication costs – combine that with lost wages – and the average annual financial impact for an (American) individual living with MS is ,000. That’s a daunting number to wrap your mind around in good economic times, much less what we’re dealing with today.”
Because they are so specialized, no generic versions of the drugs used in MS treatment are available. In addition, there are not many financial resources for (U.S) patients under 60 years of age. Some of the pharmaceutical companies that make the drugs provide assistance to patients with low incomes. The NMSS is a good source of information about obtaining such assistance in the U.S, and most countries have MS Societies. There are also local efforts to help. Kim says,
“There are several major fund raisers for MS that have local events throughout the country. Most, if not all states hold walks and MS bike rides, where pledges are collected. In Wisconsin, there are also snowmobile tours, and cross-country skiing events.” (Editor’s note: most countries around the globe hold MS events. Check your local MS Society to find out more)
The state of Wisconsin has a special interest in MS. There is a strong correlation between the disease and people of northern European ancestry. The Wisconsin chapter of NMSS reports that, although MS occurs in 1 in 10,000 people in Texas, in Wisconsin the rate of occurrence is 1 in 500. In West Bend, Wisconsin, 1 every 260 people is afflicted with MS. A large portion of Wisconsin’s population is made up of people who immigrated to the United States from northern Europe. Other correlations include low levels of vitamin D and low exposure to sunlight. However, no cause- and -effect relationship between these factors and MS have been determined.
Although there is no known cure for MS, effective strategies exist to modify the course of the disease, treat flare-ups, manage symptoms, and improve function. FDA-approved medications include Avonex, Betaseron, Copaxone, Novantrone, Rebif, and Tysabri. These drugs reduce disease activity and progression for many people with MS. In addition, there are new, orally-administered drugs in the pipeline that promise even better treatment for many MS patients. Complimentary and alternative medicine treatments, including diet, exercise, and relaxation techniques, are often effective. Rehabilitation programs also help people with the disease regain function and slow the progression of MS effects. These programs include physical therapy, occupational therapy, therapy for speech and swallowing problems, cognitive rehabilitation, and vocational rehabilitation.
Multiple sclerosis is a serious disease, and one that causes tremendous difficulties for those whom it affects. However, it is a disease that can be managed, and current research efforts promise to make it even more manageable. Kim is proud to say that her daughter has become an immunologist specializing in MS research. She is only one of the many dedicated people who are working to find new and better treatments for MS.
More information about multiple sclerosis is available at these websites:
National MS Society
MS Society Australia
MS Society Canada
MS Society UK
Brenda Layman is a freelance writer who lives in Pickerington, Ohio, with her husband of 29 years, Mark. She is a fishing enthusiast (fanatic?) who firmly believes in the healing power of the human spirit. When she is not on the water or in the woods, Brenda spends her time writing for Greenmaple Wellness Inc. and Ohio Valley Outdoors magazine. Brenda is also the author of Song of Joy, a Guide to Recovery from Sorrow.
Brenda is also a regular contributor to the Fitness Town Health & Wellness On-line E-zine. For more great articles like this one, please visit here and sign-up to receive our free newsletter once per month.
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Great blog – hopefully it will help educate the masses. Those of us with MS are grateful