Last Updated: April 4, 2013
Multiple sclerosis (MS) is a nervous system disease that affects
the brain and spinal chord by damaging the myelin sheath-material
that surrounds and protects nerve cells-thereby blocking messages
between the brain and the body and causing a range of symptoms.
It's one of the most difficult diseases to treat and diagnose, and
a leading reason a person may decide to move to a long-term care
An estimated 400,000 Americans have multiple sclerosis,
according to information published by the National Multiple
Sclerosis Society in 2004. Although only 5-10 percent of this
population requires chronic nursing home care,
they comprise a significant and growing number of persons seeking
The average age of diagnosis of multiple sclerosis is 28,
although the patient will likely have been suffering from the
disease for some time before that diagnosis; in general, most
people experience their first MS symptom between the ages of 20 and
40. It's a disease that also affects more women than men.
Multiple sclerosis symptoms range from relatively benign to
somewhat disabling to debilitating. They include:
- Visual disturbances
- Trouble with coordination and balance
- Sensations such as numbness or prickling
- Thinking and
Multiple sclerosis symptoms may prevent walking or standing, and
in the worst cases, may even cause partial paralysis. In addition
to paresthesias-the "pins and needles" sensations-some MS patients
may also experience pain. Speech impediments, tremors, and
dizziness are other frequent complaints. People with MS may also
hearing loss, according to the National Institute of
Neurological Disorders and Stroke (NINDS).
Approximately half of all people with multiple sclerosis
experience cognitive impairments such as difficulties with
concentration, attention, memory, and poor judgment, but such
symptoms are usually mild and are frequently overlooked. However,
depression is another common but more serious symptom of MS
that warrants more careful monitoring.
The disease typically begins with episodic attacks that
subsequently resolve themselves, says Dr. George Kraft, director of
the Western Multiple Sclerosis Center at the University of
Washington Medical Center.
The initial symptom of multiple sclerosis is often blurred or
double vision, red-green color distortion, or even blindness in one
eye. Most MS patients experience muscle weakness in their
extremities and difficulty with coordination and balance.
As the MS patient ages, the symptoms become more protracted. For
example, at an early stage, a symptom might disappear within a
month of onset; then, five years later, the symptom may re-occur
and not completely go away. "They typically resolve in the early
stages, then they don't," says Kraft. "Over time, it converts from
something with these episodic attacks to a steady progression."
However, the symptoms eventually stabilize. This is because the
nervous system reaches a state in which its vulnerable areas are
exhausted, and there is no more room for the disease to grow.
"There comes a point where it actually doesn't seem to progress as
people get older," Kraft says.
Solving the Puzzle of a Mysterious Disease
It is commonly accepted that multiple sclerosis is an autoimmune
disease, in which the body's immune system launches a defensive
attack against its own tissues. However, MS remains a somewhat
mysterious disease as researchers have yet to identify a definitive
Studies have shown that multiple sclerosis in the United States
is experienced most frequently in the northern and northwestern
parts of the country, a fact that continues to puzzle researchers.
"If you look across the country, you can just draw a band across
the northern states," Kraft says.
There are several reasons that may explain this, although no
definitive conclusion has been reached, Kraft says. One simply has
to do with the history of the disease-MS likely started in an
inland lake region in Sweden in the very early 1600s, and spread
through Europe during the Thirty Years' War. Persons with a similar
genetic make-up are more likely to get the disease, and it is
likely no coincidence that many Norwegians emigrated to the
northern parts of the US.
In Seattle, 200 per 100,000 persons eventually contract the
disease, while in Beijing, this number dwindles to 10 per 100,000,
because the Chinese have a much lower frequency of the vulnerable
tissue types than Europeans, according to Kraft.
Researchers also believe the climate itself may be responsible
for propagating the disease. "It is speculated that it may relate
to where a person was born and lived the first 15 years of life,"
Kraft says. "If it's in a more northern region, it's more
According to this particular theory, the prevalence of rainy
over sunny days in the northern climates may be to blame. As
opposed to the south, where plenty of sunlight helps kill viruses,
persons living in the north are more likely to encounter a high
density of viruses. The continual exposure to viruses in turn may
decrease the amount of antibodies produced, researchers have
Diagnosis and Treatment
The unanswered questions surrounding the causes of multiple
sclerosis make it a difficult disease to treat, and there is no
According to Kraft, researchers are just beginning to understand
why the disease is so unresponsive. Much of a patient's prognosis
depends upon how badly the nerve fiber is degenerating. "If the
nerve itself is lost, there is no getting around that," he
Although there is no cure for the disease, certain drugs have
been shown to help mitigate or delay the frequency of MS-related
health problems. However, many MS patients do well with no drug
therapy at all, especially as the side-effects can be severe,
according to the NINDS.
Kraft believes in aggressive treatment for multiple sclerosis
patients, and supports starting medication after the first
MS-related attack, even before the second attack-the point at which
a person is officially diagnosed with the disease. "The disease
changes if a person has received good treatment," he says. "We now
know enough about MS to know if you've had that first attack, it is
very likely MS."
The National MS Society promotes medical intervention once a
person has been diagnosed with a recurring form of MS.
"Once people are diagnosed with a relapsing form of MS, the
Society's position is very strong that they should take one of the
approved drug sequences," says Nancy Holland, vice president for
clinical programs for the National MS Society.
Beta interferon has been shown to reduce the number of
exacerbations and may slow the progression of physical disability.
When attacks do occur, they tend to be shorter and less severe.
Three forms of beta interferon (Avonex®,
Betaseron®, and Rebif®) have now been
approved by the Food and Drug Administration for treatment of
relapsing-remitting MS, according to the NINDS.
This medication is administered by injections, and treatment
ranges from every other day to once a week. All the beta interferon
medications cause varying degrees of flu-like symptoms for up to 12
hours after the injections. Additionally, some may cause liver
damage and blood count problems, according to Kraft.
The FDA also has approved Copaxone®, a medication
made from a synthetic form of myelin basic protein called copolymer
I, for the treatment of relapsing-remitting multiple sclerosis.
Copolymer I has few side effects, and studies indicate that the
agent can reduce the relapse rate by almost one third. An
immunosuppressant treatment, Novantrone®,
is approved by the FDA for the treatment of advanced or
In addition, steroids have been shown to reduce the duration of
multiple sclerosis attacks, even though they don't affect the
course of the disease over time.
MS patients who suffer from spasticity, a sustained contracting
of the muscles that causes symptoms ranging from stiffness to
spasms, are usually treated with muscle relaxants and tranquilizers
such as baclofen, tizanidine, diazepam, clonazepam, and dantrolene.
Many such patients also rely on physical therapy to preserve
remaining mobility, and make use of braces, canes, and walkers.
Finally, some antidepressant medications are recommended to help
treat the psychological effects of MS-related fatigue such as
Multiple Sclerosis and Long-Term Care
There is a certain point, however, at which medication no longer
helps a multiple sclerosis patient. "In the very late stages (of
the disease), there is no impact," Kraft says. "There is a
transition when the benefit is less and less, then virtually
nothing. When do you tell your patients they don't need to take
their shots anymore? Nobody really knows the answer-we just respect
the patient's opinion."
It is at this advanced stage of the disease that many MS
patients find themselves in
long-term care facilities, although some may need to enter a
community earlier. "When a person can no longer transfer
independently, if they can't get from bed to chair to toilet on
their own, then they really need assistance," Holland says.
"People with MS have so many special needs that are different
than [most] people in the extended care population," she says. "You
can't put a square peg in a round hole."
For example, MS patients suffering from spasticity need to be
monitored very carefully, says Holland. In severe cases, they are
treated with a pump that delivers anti-spasticity drugs directly to
the spinal chord.
Accessibility is also an important consideration for multiple
sclerosis patients looking to move into a community, says Dorothy
Northup, associate vice president of clinical programs at the
National MS Society. "Residents need very sophisticated power
equipment, and [that] takes a lot of space."
Because of the nature of the disease, MS patients are typically
younger and tend to reside at the facility a longer time.
Additionally, they may be more physically dependent but mentally
alert, and experience more symptoms of depression. The fact that MS
strikes most patients at a younger age means that an MS patient
seeking help at a facility might be in their 40s-a far cry from the
typical 82-year-old female resident. As a result, caregivers
seeking an assisted living or nursing home for a loved one with MS
need to ensure that the community not only has enough staffing to
provide 24-hour care for the symptoms of an unpredictable disease,
but can provide for someone with a desire for mobility and mental
Many MS patients are cognitively intact, intellectually alert,
and want to be stimulated, says Northup. They need things of
interest going on, and the facility needs to make sure
transportation is available so they can go to museums, restaurants,
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