AVIS was driving home alone when suddenly her vision became blurred. She quickly stopped the car. After a few minutes, her sight cleared, and she continued on her way, attributing the incident to tiredness.
Then, while on vacation four years later, AVIS awoke in the middle of the night with severe headache. She went to the hospital, where a doctor gave her an analgesic and kept her under observation, fearing a possible aneurysm.
The next day the pain was gone. However, AVIS felt very weak. She even had difficulty holding a glass of water, and she felt a tingling, blurring sensation on her right side. Concerned, she and her husband cut short their vacation and drove home. The following morning at breakfast, AVIS could not control her fork, and the right side of her entire body now felt weak. She went to a hospital, where doctors gave her a battery of tests that ruled out stroke.
Unaware of the event that had occurred four years earlier, the doctors felt that the test results were inconclusive. After several months AVIS regained the use of her right side. She concluded that she had suffered from a strange virus.
Four more years passed. Then one Friday morning Avis awoke with blurred vision in her left eye. Her doctor attributed it stress. But by Sunday the eye was blind. Terrified and in tears, she called her doctor, who immediately sent her for an examination. Treatment with steroids partially restored her vision. After further tests, doctors diagnosed Avis’s problem. She had multiple sclerosis, or MS.
WHAT IS MULTIPLE SCLEROSIS?
MS is a chronic, inflammatory disease of the central nervous system [CNS], which is the brain and spinal cord. Many physicians believe that MS is an autoimmune disease. This term refers to a group of diseases in which the immune system goes awry and attacks certain tissues of the body.
The cause of MS is unknown, but viral infection has been considered as a possible triggering factor. The end result, it seems, is that components of the immune system target the myelin sheath covering the nerve fibers of the CNS, leaving plaques or lesions on the myelin, which is an important fatty substance. Indeed, the name multiple sclerosis refers to the multiple patches of scar tissues appearing on the nerve fibers.
Myelin shields certain nerve fibers, providing a form of electrical insulation. So when myelin breaks down, electrical impulses may be completely blocked, or they may short-circuit to adjacent nerves, producing an abnormal impulse.
And because damage can occur anywhere in the CNS, no two patients have exactly the same symptoms. One patient may even have different symptoms with each attack, depending on which part of the CNS is affected.
Still, symptoms often include fatigue, weakness, numbness in the extremities, walking difficulties, blurred vision, tingling, burning, and disturbances of bladder and bowel function as well as inattention and impaired judgment. On the positive side, however, many patients “do not become severely disable,” says The National Multiple Sclerosis Society in the United States.
As in avis’s case, diagnosis may be difficult early on because symptoms may fit a number of disorders. But once a history of recurrent episodes is established, physicians can usually make a more accurate assessment.
Worldwide, about 2.5 million people have MS. That figure includes approximately 50,000 Canadians and 350,000 residents of the United States, where about 200 people are diagnosed with the disease every week. “With the exception of trauma, [MS is] the most frequent cause of neurologic disability in early to middle adulthood,” states one medical reference. And it affects nearly twice as many women as men, with the onset of symptoms usually occurring between the ages of 20 and 50.
Because MS is still incurable, doctors try to manage the disease by arresting or slowing its progress and by managing the symptoms. Medications designed to arrest or slow the progress of MS and to lessen the severity of attacks include at least two forms of interferon [a natural protein made by immune cells] and a drug called glatiramer acetate.
Doctors also prescribe drugs called corticosteroids for some patients, in order to suppress inflammation and to speed up recovery when relapses occur. However, “long-term corticosteroid treatment is rarely justified and can cause numerous medical complications including osteoporosis, ulcers, and diabetes,” says the medical publication The Merck Manual. Furthermore, steroid therapy may not alter the long-term course of the disease. Hence, some doctors prefer not to treat a mild attack.
Recent studies show that between 50 and 60 percent of people with MS take vitamins, minerals, and herbs, and other dietary supplements. Although some of these may be harmless to MS sufferers, others may be counterproductive or even dangerous. So before patients take any additional therapies or dietary supplements, they should consider the potential risks.
Taking a different approach, some researchers are studying ways to restore damaged myelin. In laboratory studies they have identified certain progenitor, or ancestral, cells that can give rise to mature myelin-producing cells. If they learn how to encourage this process, they may be able to stimulate the body to repair damaged nerves.
THE FOUR MAIN TYPES OF MS
This is the classic form of the disease, and it affects 70 to 80 percent of patients at the onset of symptoms. Relapses, or flare-ups, are clearly distinguished from periods of remission, during which symptoms resolve or partially resolve. Between relapses there is no sign of disease progression.
Of patients who initially have the relapsing-remitting form, about 70 percent go on to develop secondary progressive MS. They may continue to have relapses, but they also experience a slow, steady loss of neurological function.
Affecting about 10 percent of patients, this form of MS steadily worsens from its onset. Patients have acute relapses with or without recovery. Unlike the relapsing-remitting form, the disease progresses between flare-ups.
This form of MS affects 10 to 15 percent of patients. From its onset it progresses almost continuously, without distinct relapses and remissions. However, the rate of progression may vary over time with temporary minor improvements. It is more common in people who develop MS after the age of 40.
STANDARD TESTS FOR MS
MAGNETIC RESONANCE IMAGING [MRI]:
One of the most useful imaging methods available, MRI can produce highly detailed images of brain tissue. These images may reveal the telltale signs of MS or at least rule out other diseases if the patient has MS.
ANALYSIS OF THE CEREBROSPINAL FLUID [CSF]:
CSF is drawn from the spinal column. Doctors look for abnormal levels of certain immune system substances and substances derived from the breakdown of myelin.
EVOKED RESPONSE TESTING: Computerized equipment is used to measure the average amount of time it takes for the nerve signals to travel along nerve pathways. An abnormal response is seen in 80 to 90 percent of MS patients.
LIVING WITH MS
Over 50 percent of MS sufferers report that fatigue is one of the most difficult problems they cope with. Fatigue can aggravate the symptoms of the disease, affecting one’s employment and employment prospects. And it can erode one’s sense of control over the illness.
Hence, many who experience afternoon fatigue have found it helpful to do their work earlier in the day and to take a regular afternoon nap. For example, an hour’s rest every afternoon has helped Avis continue her work as a full-time volunteer minister.
In regard to general health care for MS sufferers, Harrison’s Principle of Internal Medicine stresses the importance of health maintenance, including stress reduction, a balanced diet, avoidance of rapid weight loss, and adequate rest.
Most researchers feel that stress can precipitate relapses. Hence, it is worthwhile for individuals to identify specific stress factors that may be reasonably avoided.
On the other hand, MS sufferers should maintain as normal and active a life as possible but without overworking, becoming fatigued, or exposing themselves to extreme heat or cold. They should also engage in appropriate exercise, says The Merck Manual: “Regular exercise [e.g., stationary biking, treadmill, swimming, stretching exercises] is recommended, even for patients with more advanced disease, because it conditions the heart and muscles, reduces spasticity, and has psychologic benefits”
It is important to know your own body,” says Avis. When I begin to feel unusually fatigued or I have tingling or numbness in my extremities, then I know to slow down for a day or two. This has helped me to manage the disease.
Depression can also be a problem for MS sufferers but not necessarily as a direct result of the disease process. After the shock of the initial diagnosis, patients typically go through various stages of grieving.
Feelings may include denial, anger, frustration, sadness, and helplessness. These feelings are normal, and they usually subside, giving way to a more positive frame of mind.
Naturally, family members and friends can be affected too, often sharing the newly diagnosed person’s grief. However, they will more readily cope and be a good support to the sufferer if they make an effort to learn about the disease.
It is good to know, for instance, that MS does not significantly affect life span, is not contagious, and is not directly hereditary. However, data does suggest that susceptibility to the disease is inherited.
Many who suffer from MS live productive, happy lives. Avis has found additional strength in her faith.