"What Is Multiple Sclerosis?"


by Meagan Lindsay, a/k/a Hopper
written September 28, 1998


Note from Editor: Although Meagan has not personally received a diagnosis of MS herself, she has first hand knowledge of the struggles of living day-to-day with this neurological disease. Her mother, Cheryl, is an MSer. Meagan wrote the following essay for a high school assignment. Isn't it comforting to know that our children are "spreading the word" and trying to help others understand multiple sclerosis? :-)


Multiple Sclerosis is an inflammatory disease of the central nervous system (CNS) that damages the myelin sheath, or insulating material, that surrounds the nerve fibers in the brain, spinal cord, and optic nerves. The myelin is lost in multiple areas leaving plaques or scars called scleroses. The disease is characterized by attacks or "flare-ups," which may be associated with plaques that prevent the conduction of nerve impulses in the CNS.

It is believed that the number of relapses a person with Multiple Sclerosis experiences may determine the degree of his or her disability in the future. A relapse is a symptom attack that typically lasts for several days to several weeks. It is an unpredictable disease because it’s course can be relatively benign, somewhat disabling, or devastating. It is crippling because communication between the brain and other parts of the body is disrupted, at worst leaving the person unable to speak, walk or write.

Relapses differ with every case of MS, and affect approximately sixty-five percent of people with the disease. No one knows exactly how many people have MS. In the United States, there are an estimated 350,000 cases, and 1.5 million cases worldwide. Another two hundred cases are diagnosed each week. However, the true number of new cases may be even higher due to patients’ reluctance to have the disease reported and the
uncertainty in diagnosing it.

Multiple Sclerosis generally affects individuals between the ages of twenty and forty, but MS has been linked to the geographic area where a patient’s first fifteen years of life are spent. MS is more common in temperate climates than in the tropics. Women develop MS at a rate almost double that of men. The disease is more common among Caucasians, but it also affects African-Americans, Hispanic-Americans, Asian-Americans, and Native Americans at a much lower rate.

The exact cause of MS is unknown. It is believed that an autoimmune process, which may be triggered by a virus and/or environmental factors, destroys the myelin sheath of nerve fibers. In an autoimmune disease, the body attacks its own tissue. For people with Multiple Sclerosis, the substance that is attacked is myelin.

Genetic factors may also determine susceptibility to Multiple Sclerosis. MS is a complicated disease to diagnose because its signs and symptoms are not specific to Multiple Sclerosis. That is, they may mimic other diseases. Warning signs may include numbness, tingling, visual blurring, and dizziness. An overwhelming fatigue, weakness, slurred speech, tremors, spasms, depression, memory problems, confusion, and bladder problems are all common symptoms. Symptoms occur in any combination and can range from mild to severe, and of long duration or short, and may appear in various combinations, depending on the area of the
nervous system affected.

Most likely one of the first symptoms MS patients suffer from is numbness or tingling. Numbness, or the lack of sensation in an extremity, is a frightening first sign many MS patients experience. The feeling of pins and needles poking a person all over overwhelms the person. This is most likely a direct result of the destruction of myelin in the nerves. Other patients suffer blurred or double vision as a first symptom. This can be overlooked as an MS symptom because often vision will return to normal in a short period of time, or a doctor may diagnose it as something else.

Dizziness and a loss of balance are often diagnosed as an inner ear problem, but it too may be an early symptom of MS. Balance, or difficulty in walking, may be thrown off by a loss of coordination. Fatigue, or the overwhelming feeling of tiredness, leaves the patient feeling helpless and unable to function. Fatigue is common in most people, however, MS causes fatigue with the least amount of activity. Simple tasks like getting up and getting dressed become difficult to complete. Overall weakness can disable a MS patient to the point of not wanting to get out of bed in the morning. This can involve one or both hands or legs. It may also be described as heaviness after walking long distances or other extensive actions.

Sharp or brief pain is a seemingly common symptom as well. Burning or a cold sensation in the hands or feet can be a problem. Some MS patients have trouble speaking correctly and much of the time their speech is slurred. Tremors and spasticity cause a patient to be shaky and unstable. A tremor is an uncontrollable shaking, usually of the hands. It too, is due to myelin destruction. A muscle spasm is when a muscle goes into sustained or temporary contractions and can cause great pain.

Spasms can occur in the arms, legs, abdomen, or back. As the disease progresses, bladder dysfunction tends to become more of a problem. Not only are physical symptoms prevalent, but cognitive dysfunction occurs as well. MS patients can have difficulty thinking and remembering things as easily as they used to. Short-term memory is often affected. Along the same lines are problems remembering a word, finding the correct word while speaking, and understanding ideas. A MS patient will often suffer from depression. As in anyone diagnosed with a chronic illness, a sense a hopelessness occurs. Most cases are considered clinical depression, but manic depression may occur as well.
MS is diagnosed by using several tests and procedures. First, a patient must have had at least two confirmed exacerbations or attacks. Then, one must have a thorough neurological exam and medical history to determine past signs and symptoms. Finally, a MRI must be performed to produce precise and highly detailed pictures of the brain and spinal cord. A spinal tap can also be a type diagnostic test. Spinal fluids are withdrawn from the lumbar area and the level of protein is measured in the fluid. If it is elevated, it can indicate a sign of MS.

Because the diagnosis remains essentially a clinical one, it is highly dependent on how accurate the individual’s medical history is and the physician’s skill in eliciting and properly evaluating this information. The problem with diagnosing MS is it fluctuates from person to person. Sometimes it just depends on the neurologist and their experience with MS… or lack thereof. Sometimes the patient presents with enough history of periods of MS symptoms that either go away and come back, or progress rapidly without ever getting better.

Unfortunately for many, years can go by before the vague complaints are taken seriously, during which the patient is made to undergo numerous psychiatric evaluations and be told they are hysterical or suffering from stress or nervous tension. Doctors will diagnose this as "definite MS," "probable MS," or "possible MS". This is mainly used by physicians until they have further evidence to warrant a diagnosis. Multiple Sclerosis is not a fatal disease for the majority of individuals living with it. The average life expectancy for someone with the disease is over ninety percent of an individual’s without MS.

There are two main types of Multiple Sclerosis that exist today. Chronic Progressive, also known as Primary Progressive, is classified when a patient has attacks and the disease process progresses. The process can range from moderate progression to rapid progression. Normally, progression is so slow that it is hardly noticeable, but in severe cases it can be very rapid.

Relapsing-Remitting, the more prevalent type, is that of which a patient has attacks with symptoms over a period of time, but eventually they go away leaving no symptoms. An extension of this is known as Secondary Progressive, which basically means that not all symptoms return to normal. It is also possible to move from one type of MS to another. For example, a Chronic Progressive can change to a Relapsing-Remitting type during the course of the illness, or vice versa.

A well-documented medical history is necessary to determine the type of MS one has. Doctors determine a patient’s disability by periodic neurological testing of basic functional systems, such as strength, vision, the sense of touch, and the testing of reflexes and coordination. They also evaluate the person’s ability to care for himself or herself, to walk independently, and to function in daily life.

Based on their clinical evaluation, they determine whether the patient’s disease is characterized by steady worsening or by periods of recovery. A tool called the Expanded Disability Status Scale (EDSS) gauges the extent of a person’s disability by measuring the level of neurologic impairment. EDSS scores range from 0 to 10, higher scores indicating a more severe form of disability.

Although no actual cure has been found for MS, there are several medical breakthroughs that have been found to slow the progression of it. Steroids are used in the acute phases to treat Multiple Sclerosis relapses. They are used to suppress the immune system hopefully preventing the body from attacking itself. For example, Prednisone is a
commonly used prescription.

There are three new drugs recently approved by the FDA, Betaseron, Avonex, and Copaxone, used for the treatment of Multiple Sclerosis. One classification, known as interferons, includes the two drugs Betaseron and Avonex. Interferons are proteins that help regulate the immune system. Betaseron is injected under the skin every other day. It is known to cause flu-like symptoms, which subside after a short period in most cases. Avonex is an intra-muscular injection given weekly and also causes flu-like symptoms.

The third drug, Copaxone, given daily as an under the skin injection, represents a unique class of therapy, is a non-interferon, non-steroidal agent that moderates the course of multiple sclerosis over the long term. This drug is well tolerated, and patients are not usually troubled by some of the side effects associated with beta interferon therapy. Unlike Betaseron and Avonex, it does not cause
the flu like symptoms.

Though these drugs do not halt MS, they are showing signs of slowing the progression of the disease. Other medicines are solely used for symptomatic use. Examples of these drugs are antidepressants for depression, muscle relaxers for spasticity, pain medication for neurologic pain, anti-inflamatories for inflammation, or bladder tranquilizers for bladder control. Extensive research is ongoing with Multiple Sclerosis.

Dr. Ute Traugott, grantee at the Albert Einstein College of Medicine in Bronx, New York, studied the central nervous system tissue specimens to further understand what treatment could help MS patients. Dr. Traugott used MS patients, normal control patients, and even patients with other neurological diseases to determine what types of interferons have some beneficial effect on patients with MS. Of the three interferons, alpha, beta, and gamma, the first two have shown some beneficial effect on the clinical course of MS, while gamma interferon significantly increases the exacerbation rate.

In the tissue from the MS patients, Dr. Traugott found that interferons were detectable only in lesions associated with active disease processes. He also found evidence indicating that gamma interferon may be involved in the growth of MS lesions, while alpha and beta interferon probably exert a suppressive effect on the immune system.

Along with Dr. Traugott’s study, Dr. Howard L. Weiner at Harvard Medical School and Dr. Gary Birnbaum at the University of Minnesota organized a formal cooperative study to determine the efficiency of plasma exchange to enhance treatment of MS exacerbations. Both relapsing-remitting and chronic progressive MS patients were admitted to the study. Half of each group underwent true plasma exchange, but the scientists observed no long-term benefits. It was concluded that the plasma exchange could enhance recovery from an MS attack in RR patients over a short run.

Although there is no cure for MS, there are some things a MS patient can do to a make life with MS easier. Such aids as canes, walkers, wheelchairs, and electric scooters help to make life more convenient. Diet and exercise can also help to alleviate symptoms of MS. A well-known diet for people with multiple sclerosis is the Swank diet, developed by a neurologist in Portland, Oregon.
It consists of a low fat intake.

Different forms of exercise can also be beneficial. Hydrotherapy, or water exercises, are very helpful for MS patients because exercises in the water don’t cause fatigue as rapidly. Yet, they contribute three times the help because of the resistance of the water. Physical therapy is another good source of exercise. Floor exercises, a stable bicycle, light weights added to an extremity, or range and motion exercises are all types of therapy a patient can use.

In the United States, every American person that has paid into the Social Security system is entitled to file a claim for disability benefits. It is a very lengthy process to be qualified for, and may take up to two or three years, but it is a process that every person with a disability should consider. After a two-year waiting period on Social Security disability, the patient is entitled to Medicare benefits. However, Medicare does not cover prescription drugs at this time. This can be a financial burden for MS patients because they do require many medications. Social Security disability is not to be confused with welfare. Disability is a separate program and patients should not feel intimidated by filing for it.

Multiple Sclerosis not only effects the patient itself, but it effects everyone who comes in contact with them. Groups such as the National Multiple Sclerosis Society holds meetings in just about every state where those who have MS can come together for support. In today’s age of high technology, a new source of support has developed with online support groups. The chat groups are not only available for people with Multiple Sclerosis, but many of the diseases that exist today. In most cases though, the person with the illness is not the only one who needs
some kind of support.

Many times other people have a hard time dealing with knowing someone they love has a disease, and not knowing what to do about it. Such groups give these people a place to talk with peers in similar situations who may have some insight on how to cope with it. Children also have a hard time coping with a parent who has MS. The best way for a child to understand the disease is to be properly informed and the best way to do this is to let them talk to someone who can explain it in simple terms. To anyone, the best way to learn to cope, is to talk to someone who knows what they are going through and can give hope and understanding.

From a personal prospective, I have grown up with a parent who has MS. My mother found the online support group, MSWorld in the winter of ’97. She became active and starting hosting in the spring of that same year. I saw how much it was helping her, and I began thinking about what I could do for family members. I talked to my mom and then she suggested it to the founder of MSChat. Within a month, I had my first chat for Children of Multiple Sclerosis Parents (COMSP).

At first few attended, but I didn’t give up. Even if only one person showed up, I wanted to continue because I felt that at least I was reaching out to someone. Growing up, I had always wished I had someone to talk to about my mother’s disease and that was really why I wanted to help those who were living with a MS parent. Later, MSWorld moved to another channel, incorporated the the name MSWorld, Inc., and became a nonprofit organization. My chat also became open to all family members and friends who had a loved one with MS. It has been a great success and I feel I have reached out to many people. The MSWorld web page is located at http://www.msworld.org. Included on the web page is a library, technical help page, locater map, online magazine, message boards, and pictures and biographies of hosts.

In conclusion, though Multiple Sclerosis may seem like a disease filled with hopelessness and continuous worrying, much credit is to be given to those who have the disease for their immense determination and will power. In the years to come, hopefully scientists and doctors will find out more about the disease and it will lead to its cure.

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