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 facility.
An estimated 400,000 Americans have multiple sclerosis, according to information published by the National Multiple Sclerosis Society in 2004. Although only 5-10% of this population requires chronic nursing home care, they comprise a significant and growing number of persons seeking such care.
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:
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 suffer from 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.
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 cause.
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 likely.”
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 found.
The unanswered questions surrounding the causes of multiple sclerosis make it a difficult disease to treat, and there is no cure.
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 says.
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 chronic MS.
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 depression.
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 stimulation.
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 and stores.
Update: January 2018