Multiple sclerosis
Information

Multiple sclerosis (MS) is an unpredictable disorder that can cause a variety of symptoms, which for many, can flare up and then subside over the course of days, months, or even years. While MS is not contagious, its causes are not yet fully understood and researchers continue to search for answers.

MS is most frequently diagnosed in young adults, although individuals of any age may be diagnosed with this neurological condition. Particularly with today’s approved treatments and wellness strategies, most individuals with MS are able to live a full and productive life, with much hope for the future.

What is MS?

Multiple sclerosis (MS) is a disease of the central nervous system (CNS). The CNS consists of the brain, optic nerves, and spinal cord. With MS, areas of the CNS become inflamed, damaging the protective covering (known as “myelin”) that surrounds and insulates the nerves (known as “axons”). In addition to the myelin, over time, the axons and nerve cells (neurons) within the CNS may also become damaged. MS is thought to be an autoimmune disease, where the body’s own white blood cells, known as lymphocytes, become misdirected and attack the body’s own myelin and eventually the axons.

The damage to the protective covering and also to the nerves disrupts the smooth flow of nerve impulses. As a result, messages from the brain and spinal cord going to other parts of the body may be delayed and have trouble reaching their destination – causing the symptoms of MS. Common symptoms of multiple sclerosis include visual problems, fatigue, difficulty with balance and coordination, various levels of impaired mobility, bladder and bowel dysfunction, depression, and cognitive issues. The specific physical, emotional/psychological, and “invisible” symptoms of MS are described in a later section.

Areas of inflammation and damage in the CNS are known as “lesions.” The changes in size, number, and location of these lesions may determine the type and severity of symptoms.

Who Gets MS?

For decades, the number of people living in the United States with MS has been estimated at 400,000. However, no system or database exists to provide an exact figure, and some sources estimate this figure to be much higher. Estimates for the global MS population typically range between 2.3 and 2.5 million.

Most people with MS experience their first symptoms and are diagnosed between the ages of 15 and 50, although individuals of any age may be diagnosed with MS. The distribution of this disease is not totally random. On average, with relapsing forms of MS, women are three times more likely than men to develop this disorder. However, with the primary-progressive form, genders are more equally divided.

Geographically, people who live farther from the equator (in more temperate climates) have a higher risk of developing MS than people living in hotter areas near the equator, or in very cold areas near the north or south poles. Individuals living beyond the 40-degree mark north or south of the equator are far more likely to develop MS, and this is especially true for people in North America, Europe, and southern Australia. The degree of risk associated with where someone lives as a child will remain throughout his or her life.

While MS is not contagious or hereditary, MS susceptibility is increased if a family member (blood relative) has MS. The average risk of developing MS in the United States is one in 1,000, or one-tenth of one percent. For first-degree relatives (such as a child or sibling), the risk increases to three or four percent. This is not true for adopted children or half siblings (who do not share the same parent who has MS), whose risk is the same as unrelated individuals.

Possible Causes of MS

Researchers have studied a variety of possible causes for MS and a combination of factors appears to be involved. Popular theories include:

  • Slow-acting viruses (one that could remain dormant for many years), such as measles, herpes, human T-cell lymphoma, and Epstein-Barr; after being exposed to one of these viruses, some researchers theorize that MS may develop in genetically susceptible people.

  • Genes, which play a role in susceptibility to MS, but the exact mechanisms remain unclear.

  • Low levels of Vitamin D, which may increase one’s risk of MS; this theory is supported by the fact that populations living closer to the equator and exposed to more sunlight have a lower incidence of MS.

  • Parasites, which are a possible risk-reduction factor in the development of MS; research has found that parasites can modulate the immune system and dampen its responses; people who have certain parasites are less likely to develop MS.

  • Interactions between a person’s microbiome and his or her immune cells; these may contribute to the development and severity of many disease states – including MS; the microbiome refers to the many millions of bacteria that reside in a person’s body, with current research focusing mainly on the bacteria that live in the intestines (referred to as “gut microbiota”).

  • Cigarette smoking; one study shows that women who smoke are 1.6 times more likely to develop MS than women who are non-smokers; additionally, individuals with MS who smoke may experience a more rapid progression of their disease.

Diagnosing MS

Diagnosing and evaluating MS disease activity is most reliably done by neurologists through a neurological history and examination. Tests that can indicate MS and rule out “MS mimickers” (other diseases that resemble MS but have other causes) are also performed.

Lesions (areas of inflammation and myelin damage in the brain and/or spine) may be viewed on a magnetic resonance imaging (MRI) scan. For people with MS, the MRI is used to evaluate the size and location of lesions. Inflammation can be better evaluated with gadolinium (or contrast) enhancement – a type of dye given to the patient via injection prior to the procedure. In addition to the initial diagnosis, an MRI can help determine the effectiveness of a disease-modifying therapy (DMT), or to get an “inside view” of a patient’s disease status.

Another tool that is sometimes used in the diagnosis of MS is a lumbar puncture (also known as a spinal tap). This is a procedure where a very thin needle is inserted at the base of the spine and a small amount of cerebrospinal fluid (CSF) is collected to evaluate cellular and chemical abnormalities.

Evoked potential (EP) tests may also be used to help diagnose MS, if further support is needed. These measure the speed of the brain’s response to visual, auditory (sound), or sensory (feeling) stimuli, using electrodes taped to the patient’s head. Delayed responses can indicate possible damage to the nerve pathways.

Additional tools are available to measure disease activity and changes in specific symptoms. The most widely known scale among the MS community is the Kurtzke Expanded Disability Status Scale (EDSS). It uses whole and half numbers from one to 10 to measure degree of disability, largely in terms of mobility.

What are the Symptoms of MS?

MS has the potential to cause several different symptoms and the specific symptoms each person experiences can vary greatly.

  • Physical symptoms include: balance problems; bladder dysfunction; bowel problems; muscle spasticity (stiffness); sexual dysfunction; speech difficulties; swallowing disorders; tremor; as well as walking and mobility issues.

  • Emotional, mental, and psychological symptoms include: anxiety; cognitive changes; depression; and pseudobulbar affect (PBA – a neurologic effect characterized by sudden, uncontrollable expressions of laughter or crying without an apparent trigger).

  • “Invisible” symptoms include: dizziness/vertigo; fatigue; numbness; pain; sleep issues; Uhthoff’s syndrome (the temporary appearance of symptoms resulting from heat stress); visual disorders; and weakness.

Medications and other treatment strategies are available to manage the symptoms of MS. Please see the later section titled, “Treatment Strategies for Managing MS Symptoms,” for more information.

What is an MS Relapse?

Relapses, also referred to as exacerbations, attacks, flare-ups, episodes, or bouts, are initially experienced by most people diagnosed with multiple sclerosis (MS). Relapses occur with relapsing-remitting and sometimes secondary-progressive forms of MS, both of which are described in the following section on “Types of MS.”

During a relapse, inflammation is occurring along the nerves and the myelin, causing individuals with MS to have a temporary worsening or recurrence of existing symptoms and/or the appearance of new symptoms. This can range from a few days in duration to a few months, followed by a complete or partial recovery (remission). Acute physical symptoms and neurological signs must be present for at least 24 to 48 hours, without any signs of infection or fever, before the treating physician may consider this type of flare-up to be a true relapse.

A pseudoexacerbation is a temporary worsening of symptoms without actual myelin inflammation or damage, brought on by other influences. Examples include other illnesses or infection, exercise, a warm environment, depression, exhaustion, and stress.

Treatments are available to help reduce the severity of an MS relapse. Please see the later section titled, “The FDA-Approved Treatments for MS Relapses,” for more information.

Types of MS

Multiple sclerosis (MS) affects each person differently. The most common types of MS are:

  • Relapsing-Remitting MS (RRMS)

  • Secondary-Progressive MS (SPMS)

  • Primary-Progressive MS (PPMS)

Initially, most people with MS experience symptom flare-ups, which are also known as relapses, exacerbations, or attacks. As noted in the previous section, these usually persist for a short period of time (from a few days to a few months) and afterward may remain symptom-free for periods of months or years. This type of MS, in which people experience symptom flare-ups, is referred to as relapsing-remitting MS (RRMS). Approximately 80 to 85 percent of people with MS are initially diagnosed with this form of the disease.

Over time, RRMS may advance to secondary-progressive MS (SPMS). This form of MS does not have the dramatic variations in symptoms that RRMS does, but rather has a slow, steady progression – with or without relapses. If untreated, approximately half of individuals with RRMS convert to SPMS within 10 years.

Approximately 10 percent of the MS population is diagnosed with primary-progressive MS (PPMS), where individuals experience a steady worsening of symptoms from the start, and do not have periodic relapses and remissions. A small percentage of individuals may be diagnosed with other forms of MS, but these are less-common and the terminology may vary.

Treatments for MS

The US FDA-Approved Long-Term Treatments for MS

Prior to the mid-1990s, individuals with MS had no treatment options available to slow MS-disease activity. Since that time, the United States Food and Drug Administration (FDA) has approved several disease-modifying therapies (DMTs) for individuals with relapsing forms of multiple sclerosis (RMS). These long-term treatments have been life-changing for many individuals with this most-common form of the disease.

However, no DMTs had been approved for other forms of MS until 2017, when the FDA approved the first medication for both relapsing forms of MS as well as primary-progressive MS (PPMS. Additionally, another medication already approved for relapsing forms of MS, was approved in 2018 as the first DMT for the treatment of children and adolescents, ages 10 through 17, with relapsing multiple sclerosis (MS). Although a treatment has yet to be approved for secondary-progressive MS (SPMS), some experimental treatments are being studied for this form and may eventually be approved by the FDA.

Treatment with a long-term DMT is critical to slow disease activity. Treatment is particularly important since disease activity and damage usually continue within the central nervous system even when no new symptoms are present. DMTs not only reduce the number and severity of symptom flare-ups, but also reduce the number of active lesions that appear on an MRI, as well as delay the progression of the disease (possibly delaying any related disability).

Under normal circumstances, the different DMTs used to treat MS are given individually, not in combination with one another, so only one long-term medication is prescribed at a time. These medications are administered differently, depending on which one is selected. Some are taken at home, either orally (by mouth) or via self-injection, while others are given via intravenous (IV) infusion, usually at a hospital or infusion center.

The US FDA-Approved Treatments for MS Relapses

Relapses are usually treated with a high-dose course of powerful corticosteroids (a type of steroid) over a period of three to five days. These are given by intravenous (IV) infusion, administering the drug directly into the bloodstream for a quicker response.

Another FDA-approved option is a type of gel that contains a highly purified form of the hormone adrenocorticotropin (ACTH). It is given once daily for two to three weeks and is injected either into the muscle or under the skin.

Not all relapses require treatment – some are mild and one’s neurologist may choose to reserve treatment for a more severe relapse. Conversely, when someone is experiencing a very severe relapse that is not responding to the approved treatment options, the treating physician may possibly look to experimental treatments that have not yet been approved by the FDA specifically for treating MS relapses.

Treatment Strategies for Managing MS Symptoms

When experiencing one or more MS symptoms, individuals should consult their physician. Medications are available to treat many MS symptoms, which may include over-the-counter drugs as well as prescribed medications. Diet, exercise, counseling, and different types of therapies may also be helpful with managing certain symptoms.

MS symptoms are often compounded by extreme fatigue, which may be worse in the afternoon, sometimes relating to a rise in body temperature. Some symptoms may be temporarily increased by heat intolerance – a classic MS tendency. Keeping cool through air-conditioning or various cooling devices (such as those offered by MSAA’s Cooling Distribution Program), may be helpful for people with heat-sensitive MS.

When recovering from a symptom flare-up or learning to cope with a change in mobility, rehabilitation through physical therapy and occupational therapy can be of great value. Speech therapy, therapeutic exercise, and certain medical devices may also be useful in dealing with the symptoms of MS. When a family member is diagnosed with MS, participating in some type of counseling program is often of benefit to everyone involved.

As a reminder, MS can cause a variety of symptoms. The specific symptoms and their severity that each person experiences will vary greatly.

PLEASE NOTE: All treatment information is based on the United States Food and Drug Administration approvals. To read more about the FDA-approved medications for MS in the United States, including those for long-term treatments, relapses, and symptom management, please visit the treatment section of MSAA’s website. Additionally, please note that MSAA’s programs and services are only available in the United States.

Wellness Tips

Exercise

Exercise is key in maintaining function in people with MS. In addition to showing positive effects on walking speed, endurance, and aerobic capacity in MS, exercise can also lower stress and improve mood, energy, physical health, and overall wellbeing. Aquatic exercise, yoga, and tai chi are among the many great exercise options that have positive effects for individuals with MS and may also be customized to suit one’s preferences and ability levels.

Diet

Although no specific “MS diet” has been universally accepted by the medical community, food choices can make a difference in important issues such as energy level, bladder and bowel function, and overall health. MS specialists often recommend a low-fat, high-fiber diet, such as that recommended by the American Heart Association. Doctors agree that eating a healthy diet to promote general wellness and prevent certain other medical conditions could potentially have a positive impact on MS and its symptoms.

Mind-Body Strategies

Mindfulness has enormous potential for people with MS. The goal of mindfulness is to teach individuals to stay fully in the present, without added judgment or assumptions about their present or future situations. This technique has been shown to significantly decrease anxiety, depression, and stress in many conditions.

Guided imagery promotes biophysical and biochemical changes, bringing about benefits that range from improved mood, reduced depression, and lowered anxiety, to reductions in blood pressure and blood sugar, improved immune functions, and a reduction in pain. Guided imagery requires a state of deep relaxation, and adds the component of a gentle direction to encourage sensory images.

Please note: Individuals should consult their physician prior to making any changes to their exercise routine or diet. Wellness information shown above originally appeared in MSAA’s booklet, Understanding Progression in MS.

MS Resources

A wide variety of resources and tools are available for people living with MS including: in-person educational programs led by MS experts, informative publications on specific topics, online forums with other individuals who have been affected by MS, safety and mobility equipment distribution programs, and more.

· My MSAA Community

· Discover MS Resources

· MSAA’s website: mymsaa.org

One resource that can help manage the range of symptoms someone can experience, is a mobile phone app. Consistently ranked as one of the top MS apps, My MS Manager™ is a free, HIPPA-compliant app that is available for iOS and Android devices. This free app allows users to track disease activity, store medical information, and generate charts and reports that can be shared with an individual’s healthcare team.

To learn about other recommended apps, please visit Healthline or search for “multiple sclerosis” in your device’s app store.