MS

Whether you have or may have MS, or care about someone who does, finding the right information for you is an important step. Learn the facts about MS: what it is, who gets it and why, what symptoms it can cause, and how it's diagnosed and treated.

What is MS

Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another. Today, new treatments and advances in research are giving new hope to people affected by the disease.

MS is Thought to be an Autoimmune Disease

The body’s own defense system attacks myelin, the fatty substance that surrounds and protects the nerve fibers in the central nervous system. The nerve fibers themselves can also be damaged. The damaged myelin forms scar tissue (sclerosis), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing the variety of symptoms that can occur.

Most people with MS learn to cope with the disease and continue to lead satisfying, productive lives.

The Four Courses of MS

People with MS can typically experience one of four disease courses, each of which might be mild, moderate, or severe.

    * Relapsing-Remitting MS
      People with this type of MS experience clearly defined attacks of worsening neurologic function. These attacks—which are called relapses, flare-ups, or exacerbations —are followed by partial or complete recovery periods (remissions), during which no disease progression occurs. Approximately 85% of people are initially diagnosed with relapsing-remitting MS.
    * Primary-Progressive MS
      This disease course is characterized by slowly worsening neurologic function from the beginning—with no distinct relapses or remissions. The rate of progression may vary over time, with occasional plateaus and temporary minor improvements. Approximately 10% of people are diagnosed with primary-progressive MS.
    * Secondary-Progressive MS
      Following an initial period of relapsing-remitting MS, many people develop a secondary-progressive disease course in which the disease worsens more steadily, with or without occasional flare-ups, minor recoveries (remissions), or plateaus. Before the disease-modifying medications became available, approximately 50% of people with relapsing-remitting MS developed this form of the disease within 10 years. Long-term data are not yet available to determine if treatment significantly delays this transition.
    * Progressive-Relapsing MS
      In this relatively rare course of MS (5%), people experience steadily worsening disease from the beginning, but with clear attacks of worsening neurologic function along the way. They may or may not experience some recovery following these relapses, but the disease continues to progress without remissions.

Since no two people have exactly the same experience of MS, the disease course may look very different from one person to another. And, it may not always be clear to the physician—at least right away—which course a person is experiencing.

What Causes MS

While the cause (etiology) of MS is still not known, scientists believe that a combination of several factors may be involved. Studies are ongoing in the areas of immunology (the science of the body’s immune system), epidemiology (that looks at patterns of disease in the population), and genetics in an effort to answer this important question. Understanding what causes MS will be an important step toward finding more effective ways to treat it and—ultimately—cure it, or even prevent it from occurring in the first place.

The major scientific theories about the causes of MS include the following:

Immunologic

It is now generally accepted that MS involves an autoimmune process—an abnormal response of the body’s immune system that is directed against the myelin (the fatty sheath that surrounds and insulates the nerve fibers) in the central nervous system (CNS—the brain, spinal cord and optic nerves). The exact antigen, or target that the immune cells are sensitized to attack, remains unknown. In recent years, however, researchers have been able to identify which immune cells are mounting the attack, some of the factors that cause them to attack, and some of the sites, or receptors, on the attacking cells that appear to be attracted to the myelin to begin the destructive process. Ongoing efforts to learn more about the autoimmune process in MS—what sets it in motion, how it works, and how to slow or stop it—are bringing us closer to understanding the cause of MS.

Environmental

MS is known to occur more frequently in areas that are farther from the equator. Epidemiologists—scientists who study disease patterns—are looking at many factors, including variations in geography, demographics (age, gender, and ethnic background), genetics, infectious causes, and migration patterns, in an effort to understand why. Studies of migration patterns have shown that people born in an area of the world with a high risk of MS who then move to an area with a lower risk before the age of 15, acquire the risk of their new area. Such data suggest that exposure to some environmental agent that occurs before puberty may predispose a person to develop MS later on.

Some scientists think the reason may have something to do with vitamin D (.pdf), which the human body produces naturally when the skin is exposed to sunlight. People who live closer to the equator are exposed to greater amounts of sunlight year-round. As a result, they tend to have higher levels of naturally-produced vitamin D, which is thought to have a beneficial impact on immune function and may help protect against autoimmune diseases like MS. The possible relationship between MS and sunlight exposure is currently being looked at in a Society-funded epidemiological study in Australia.

Other scientists study MS clusters—which are defined as higher-than-expected numbers of cases of MS that have occurred over a specific time period and/or in a certain area. These clusters are of interest because they may provide clues to environmental (such as environmental and industrial toxins, diet, or trace metal exposures) factors that might cause or trigger the disease. So far, cluster studies have not produced clear evidence for the existence of any triggering factor or factors in MS.

Infectious

Since initial exposure to numerous viruses, bacteria and other microbes occurs during childhood, and since viruses are well recognized as causes of demyelination and inflammation, it is possible that a virus or other infectious agent is the triggering factor in MS. More than a dozen viruses and bacteria, including measles, canine distemper, human herpes virus-6, Epstein-Barr, and Chlamydia pneumonia have been or are being investigated to determine if they are involved in the development of MS, but none have been definitively proven to trigger MS.

Genetic

While MS is not hereditary in a strict sense, having a first-degree relative such as a parent or sibling with MS increases an individual's risk of developing the disease several-fold above the risk for the general population. Studies have shown that there is a higher prevalence of certain genes in populations with higher rates of MS. Common genetic factors have also been found in some families where there is more than one person with MS. Some researchers theorize that MS develops because a person is born with a genetic predisposition to react to some environmental agent that, upon exposure, triggers an autoimmune response. Sophisticated new techniques for identifying genes may help answer questions about the role of genes in the development of MS.

Who Gets MS?

Why some individuals are more likely than others to develop MS

n the United States today, there are approximately 400,000 people with multiple sclerosis (MS)—with 200 more people diagnosed every week. Worldwide, MS is thought to affect more than 2.5 million people. While the disease is not contagious or directly inherited, epidemiologists—the scientists who study patterns of disease—have identified factors in the distribution of MS around the world that may eventually help determine what causes the disease. These factors include gender, genetics, age, geography, and ethnic background.
Patterns in the Distribution of MS

    * As in other autoimmune diseases, MS is significantly more common (at least 2-3 times) in women than men. This gender difference has stimulated important research initiatives looking at the role of hormones in MS. Read more on autoimmune diseases.
    * MS is not directly inherited, but genetics play an important role in who gets the disease. While the risk of developing MS in the general population is 1/750, the risk rises to 1/40 in anyone who has a close relative (parent, sibling, child) with the disease. Even though identical twins share the same genetic makeup, the risk for an identical twin is only 1/4—which means that some factor(s) other than genetics are involved.
    * While most people are diagnosed between the ages of 20 and 50, MS can appear in young children and teens as well as much older adults. Studying the disease in different age groups may help scientists determine the cause of MS and explain why the disease course differs from one person to another. Important questions include why the disease appears so early in some children and why people who are diagnosed after age 50 tend to have a more steadily progressive course that primarily affects their ability to walk.
    * In all parts of the world, MS is more common at northern latitudes that are farther from the equator and less common in areas closer to the equator. Researchers are now investigating whether increased exposure to sunlight and the vitamin D it provides may have a protective effect on those living nearer the equator.
    * MS occurs in most ethnic groups, including African-Americans, Asians and Hispanics/Latinos, but is more common in Caucasians of northern European ancestry. However some ethnic groups, such as the Inuit, Aborigines and Maoris, have few if any documented cases of MS regardless of where they live. These variations that occur even within geographic areas with the same climate suggest that geography, ethnicity, and other factors interact in some complex way.

Are the Numbers of People with MS Increasing?

While more people are being diagnosed with MS today than in the past, epidemiologists have found no evidence to suggest that the disease is on the increase. More likely explanations include a greater awareness of the disease, improved medical care, and more effective tools for making the diagnosis. In addition, the availability of effective treatments makes physicians more likely to communicate the diagnosis to their patients.

What are MS Clusters?

A "cluster" of MS can be defined as the perception that a very high number of cases of MS have occurred over a specific time period and/or in a certain area. Such clusters of MS—or of other diseases where clusters are occasionally reported—are of interest because they may provide clues to environmental or genetic risk factors which might cause or trigger the disease. So far, cluster studies (in the Faroe Islands, Galion, OH, DePue, IL, and El Paso, TX, among others) have not produced clear evidence for the existence of any causative or triggering factor or factors in MS. Read more information about MS Clusters.

What are Possible Symptoms of MS?

The highly variable symptoms depend on which areas of the central nervous system have been damaged.

In multiple sclerosis , damage to the myelin in the central nervous system (CNS), and to the nerve fibers themselves, interferes with the transmission of nerve signals between the brain and spinal cord and other parts of the body. This disruption of nerve signals produces the primary symptoms of MS, which vary depending on where the damage has occurred.

Over the course of the disease, some symptoms will come and go, while others may be more lasting.

Most Common Symptoms
Some symptoms of MS are much more common than others.

Fatigue

Fatigue is one of the most common symptoms of MS, occurring in about 80% of people. Fatigue can significantly interfere with a person's ability to function at home and at work, and may be the most prominent symptom in a person who otherwise has minimal activity limitations.

Numbness

Numbness of the face, body, or extremities (arms and legs) is one of the most common symptoms of MS, and is often the first symptom experienced by those eventually diagnosed as having MS.

Walking (Gait), Balance, & Coordination Problems

Problems with gait (difficulty in walking) are among the most common mobility limitations in MS. Gait problems are related to several factors.
Learn more about Gait Problems
Bladder Dysfunction

Bladder dysfunction,
which occurs in at least 80% of people with MS, usually can be managed quite successfully

Bowel Dysfunction

Constipation is a particular concern among people living with MS, as is loss of control of the bowels. Diarrhea and other problems of the stomach and bowels also can occur.

Vision Problems

A vision problem is the first symptom of MS for many people. The sudden onset of double vision, poor contrast, eye pain, or heavy blurring is frankly terrifying-and the knowledge that vision may be compromised can make people with MS anxious about the future.

Dizziness and Vertigo

Dizziness is a common symptom of MS. People with MS may feel off balance or lightheaded. Much less often, they have the sensation that they or their surroundings are spinning, a condition known as vertigo.

Sexual Dysfunction

Sexual problems are often experienced by people with MS, but they are very common in the general population as well. Sexual arousal begins in the central nervous system, as the brain sends messages to the sexual organs along nerves running through the spinal cord. If MS damages these nerve pathways, sexual response—including arousal and orgasm—can be directly affected. Sexual problems also stem from MS symptoms such as fatigue or spasticity, as well as from psychological factors relating to self-esteem and mood changes.

Pain

Pain syndromes are common in MS. In one study, 55% of people with MS had "clinically significant pain" at some time. Almost half were troubled by chronic pain.

Cognitive Function

Cognition refers to a range of high-level brain functions, including the ability to learn and remember information: organize, plan, and problem-solve; focus, maintain, and shift attention as necessary; understand and use language; accurately perceive the environment, and perform calculations. Cognitive changes are common in people with MS—approximately 50% of people with MS will develop problems with cognition.

Emotional Changes

Emotional changes are very common in MS—as a reaction to the stresses of living with a chronic, unpredictable illness and because of neurologic and immune changes caused by the disease. Bouts of severe depression (which is different from the healthy grieving that needs to occur in the face of losses and changes caused by MS), mood swings, irritability, and episodes of uncontrollable laughing and crying (called pseudobulbar affect) pose significant challenges for people with MS and their family members.

Depression

Depression is common during the course of multiple sclerosis. In fact, studies have suggested that clinical depression, the severest form of depression, is more frequent among people with MS than it is in the general population or in persons with other chronic, disabling conditions.

Less Common Symptoms
These symptoms also occur in MS, but much less frequently.

Speech Disorders

Speech and voice problems occur in approximately 25-40 percent of people with MS, particularly during relapses or periods of extreme fatigue. The problems are of two types—dysarthria refers to changes in the production of speech, including slurring, unclear articulation of words, and difficulty controlling loudness; dysphonia is the term used for changes in voice quality, including hoarseness, breathiness, nasality, poor control of pitch.

Swallowing Problems

Swallowing problems—referred to as dysphagia—result from damage to the nerves controlling the many small muscles in the mouth and throat. When dysphagia occurs, food and liquids can pass into the airway and lungs, causing the person to cough and choke. Because particles that remain in the lungs can cause aspiration pneumonia—a serious complication of MS—prompt evaluation and treatment by a speech/language pathologist are essential.

Headache

Although headache is not a common symptom of MS, some reports suggest that people with MS have an increased incidence of certain types of headache.

Hearing Loss

Hearing loss is an uncommon symptom of MS. About 6% of people who have MS complain of impaired hearing. In very rare cases, hearing loss has been reported as the first symptom of the disease. Deafness due to MS is exceedingly rare, and most acute episodes of hearing deficit caused by MS tend to improve.

Seizures

Seizures, which are the result of abnormal electrical discharges in an injured or scarred area of the brain, are fairly uncommon among people with MS. Their incidence has been estimated at 2% to 5%, compared to the estimated 3% incidence of seizures in the general population.

Tremor

Many people with MS experience some degree of tremor, or uncontrollable shaking. It can occur in various parts of the body.

Respiration / Breathing Problems

Respiration problems occur in people whose chest muscles have been severely weakened by damage to the nerves that control those muscles. Aspiration pneumonia (resulting from the food particles and/or liquids passing into the lungs) can also make breathing more difficult. Breathing problems, which can contribute to MS-related fatigue and interfere with speech and voice production, should be evaluated and treated by nurses or rehabilitation professionals with expertise in respiratory problems.

Itching

Pruritis (itching) may occur as a symptom of MS. It is one of the family of abnormal sensations—such as "pins and needles" and burning, stabbing, or tearing pains—which may be experienced by people with MS. These sensations are known as dysesthesias, and they are neurologic in origin.

How is MS Diagnosed?

The tests and procedures needed to diagnose MS

At this time, there are no symptoms, physical findings or laboratory tests that can, by themselves, determine if a person has MS. The doctor uses several strategies to determine if a person meets the long-established criteria for a diagnosis of MS and to rule out other possible causes of whatever symptoms the person is experiencing. These strategies include a careful medical history, a neurologic exam and various tests, including magnetic resonance imaging (MRI), evoked potentials (EP) and spinal fluid analysis.
The Criteria for a Diagnosis of MS

In order to make a diagnosis of MS, the physician must:

    * Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND
    * Find evidence that the damage occurred at least one month apart AND
    * Rule out all other possible diagnoses

In 2001, the International Panel on the Diagnosis of Multiple Sclerosis updated the criteria to include specific guidelines for using magnetic resonance imaging (MRI), visual evoked potentials (VEP) and cerebrospinal fluid analysis to speed the diagnostic process. These tests can be used to look for a second area of damage in a person who has experienced only one attack (also called a relapse or an exacerbation) of MS-like symptoms — referred to as a clinically-isolated syndrome (CIS). A person with CIS may or may not go on to develop MS.

The criteria were further revised in 2005 (now referred to as The Revised McDonald Criteria) to make the process even easier and more efficient.
The Tools for Making a Diagnosis
Medical History and Neurologic Exam

The physician takes a careful history to identify any past or present symptoms that might be caused by MS and to gather information about birthplace, family history and places traveled that might provide further clues. The physician also performs a variety of tests to evaluate mental, emotional and language functions, movement and coordination, balance, vision, and the other four senses.

In many instances, the person’s medical history and neurologic exam provide enough evidence to meet the diagnostic criteria. Other tests are used to confirm the diagnosis or provide additional evidence if it’s necessary.
MRI

MRI is the best imaging technology for detecting the presence of MS plaques or scarring (also called lesions) in different parts of the CNS. It can also differentiate old lesions from those that are new or active.

The diagnosis of MS cannot be made solely on the basis of MRI because there are other diseases that cause lesions in the CNS that look like those caused by MS. And even people without any disease — particularly the elderly — can have spots on the brain that are similar to those seen in MS.

Although MRI is a very useful diagnostic tool, a normal MRI of the brain does not rule out the possibility of MS. About 5% of people who are confirmed to have MS do not initially have brain lesions on MRI. However, the longer a person goes without brain or spinal cord lesions on MRI, the more important it becomes to look for other possible diagnoses.

Visual Evoked Potential (VEP)

Evoked potential (EP) tests are recordings of the nervous system's electrical response to the stimulation of specific sensory pathways (e.g., visual, auditory, general sensory). Because damage to myelin (demyelination) results in a slowing of response time, EPs can sometimes provide evidence of scarring along nerve pathways that does not show up during the neurologic exam. Visual evoked potentials are considered the most useful for confirming the MS diagnosis.

Cerebrospinal Fluid Analysis

Analysis of the cerebrospinal fluid, which is sampled by a spinal tap, detects the levels of certain immune system proteins and the presence of oligoclonal bands. These bands, which indicate an immune response within the CNS, are found in the spinal fluid of about 90-95% of people with MS. But because they are present in other diseases as well, oligoclonal bands cannot be relied on as positive proof of MS.

Blood Tests

While there is no definitive blood test for MS, blood tests can rule out other conditions that cause symptoms similar to those of MS, including Lyme disease, a group of diseases known as collagen-vascular diseases, certain rare hereditary disorders, and AIDS.
Other Conditions Cause Demyelination (Damage to Myelin)

    * Demyelination in the Central Nervous System

      Although MS is the most common, other conditions can damage myelin in the CNS, including viral infections, side effects from high exposure to certain toxic materials, severe vitamin B12 deficiency, autoimmune conditions that lead to inflammation of blood vessels (the "collagen-vascular diseases"), and some rare hereditary disorders.

    * Demyelination in the Peripheral Nervous System

      Demyelination of the peripheral nervous system (the nerves outside the brain and spinal cord) occurs in Guillain-Barré Syndrome. After some injuries, the myelin sheath in the peripheral nervous system regenerates, bringing recovery of function.

Some demyelinating conditions are self-limiting, while others may be progressive. Careful (and sometimes repetitive) examinations may be needed to establish an exact diagnosis among the possible causes of neurologic symptoms.

How is MS Treated?

Strategies available to modify the disease course, treat relapses, manage symptoms, and improve function and quality of life

Although there is still no cure for MS, effective strategies are available to modify the disease course, treat exacerbations (also called attacks, relapses, or flare-ups), manage symptoms, improve function and safety, and provide emotional support. In combination, these treatments enhance the quality of life for people living with MS.
Modifying the Disease Course

The following agents can reduce disease activity and disease progression for many individuals with relapsing forms of MS, including those with secondary progressive disease who continue to have relapses.

FDA-Approved Disease-Modifying Agents

Avonex (interferon beta-1a) {my wife has been on Avonex for 14+ years}
Betaseron (interferon beta-1b)
Copaxone (glatiramer acetate)
Extavia (interferon beta-1b)
Novantrone (mitoxantrone)
Rebif (interferon beta-1a)
Tysabri (natalizumab)

Treating Exacerbations

An exacerbation of MS is caused by inflammation in the central nervous system (CNS) that causes damage to the myelin and slows or blocks the transmission of nerve impulses. To be a true exacerbation, the attack must last at least 24 hours and be separated from a previous exacerbation by at least 30 days. However, most exacerbations last from a few days to several weeks or even months. Exacerbations can be mild or severe enough to interfere with a person’s ability to function at home and at work. Severe exacerbations are most commonly treated with high-dose corticosteroids to reduce the inflammation.

Managing Symptoms

Symptoms of MS are highly variable from person to person and from time to time in the same individual. While symptoms can range from mild to severe, most can be successfully managed with strategies that include medication, self-care techniques, rehabilitation (with a physical or occupation therapist, speech/language pathologist, cognitive remediation specialist, among others), and the use of assistive devices.

Promoting Function through Rehabilitation

Rehabilitation programs focus on function—they are designed to help you improve or maintain your ability to perform effectively and safely at home and at work. Rehabilitation professionals focus on overall fitness and energy management, while addressing problems with accessibility and mobility, speech and swallowing, and memory and other cognitive functions.

Rehabilitation is an important component of comprehensive, quality health care for people with MS, at all stages of the disease.

Rehabilitation programs include:

    * Physical Therapy
    * Occupational Therapy
    * Therapy for Speech and Swallowing Problems
    * Cognitive Rehabilitation
    * Vocational Rehabilitation

The Role of Complementary and Alternative Medicine (CAM)

CAM includes everything from exercise and diet to food supplements, stress management strategies, and lifestyle changes. These therapies come from various disciplines and traditions—yoga, hypnosis, relaxation techniques, traditional herbal healing, Chinese medicine, macrobiotics, naturopathy, and many others. They are referred to as complementary when they are used in conjunction with conventional medical treatments and alternative when they are used instead of conventional treatments.

*information on this web page was obtained through open searches on the internet. This information is available to anyone with an internet connection, and search engine. All of the information is in public domain.