MULTIPLE SCLEROSIS:HOW TO COPE AND STANDARD TEST FOR IT
LIVING WITH MULTIPLE SCLEROSIS
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.
MANAGING MS
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
RELAPSING-REMITTING:
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.
SECONDARY PROGRESSIVE:
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.
PROGRESSIVE-RELAPSING:
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.
PRIMARY PROGRESSIVE:
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.
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