Multiple Sclerosis

(Orthopedic Impairment)

DEFINITION

Our nation’s special education law, the Individuals with Disabilities Education Act (IDEA) include multiple sclerosis (MS) under “orthopedic impairment,” which means…

“…a severe orthopedic impairment that adversely affects a child's educational performance. The term includes impairments caused by congenital anomaly (e.g., clubfoot, absence of some member, etc.), impairments caused by disease (e.g., poliomyelitis, bone tuberculosis, etc.), and impairments from other causes (e.g., cerebral palsy, amputations, and fractures or burns that cause contractures).”

[34 Code of Federal Regulations §300.8(c)(8)]

OTHER DEFINITIONS

Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and the body. MS involves an immune-mediated process in which an abnormal response of the body’s immune system is directed against the central nervous system (CNS). The CNS is made up of the brain, spinal cord, and optic nerves. Within the CNS, the immune system causes inflammation that damages myelin – the fatty substance that surrounds and insulates the nerve fibers – as well as the nerve fibers themselves, and the specialized cells that make myelin. When myelin or nerve fibers are damaged or destroyed in MS, messages within the CNS are altered or stopped completely. Damage to areas of the CNS may produce a variety of neurological symptoms that will vary among people with MS in type and severity.

The damaged areas develop scar tissue which gives the disease its name – multiple areas of scarring or multiple sclerosis.

(National MS Society, 2019)

TYPES

Clinically isolated syndrome (CIS)

CIS is a first episode of neurologic symptoms inflammation and demyelination in the central nervous system. This episode, which by definition must last for at least 24 hours, is characteristic of multiple sclerosis but does not yet meet the criteria for a diagnosis of MS because people who experience a CIS may or may not go on to develop MS. When CIS is accompanied by lesions on a brain MRI that are similar to those seen in MS, the person has a high likelihood of further episodes and receiving an MS diagnosis.

Relapsing-Remitting MS (RRMS)

This is the most common disease course of MS – approximately 85% of people with MS are initially diagnosed with RRMS. It is characterized by clearly defined attacks of new or increasing neurologic symptoms. These attacks (relapses/exacerbations) are followed by periods of partial or complete recovery (remissions). During remissions, all symptoms may disappear, or some symptoms may continue and become permanent. However, there is no apparent progression of the disease during the periods of remission. At different points in time, RRMS can be further characterized as active (with relapses and/or evidence of new MRI activity) or not active, as well as worsening (a confirmed increase in disability over a specified period of time following a relapse) or not worsening.

Secondary Progressive MS (SPMS)

SPMS follows an initial relapsing-remitting course. Most people who are diagnosed with RRMS will eventually transition to a secondary progressive course in which there is a progressive worsening of neurologic function (accumulation of disability) over time. SPMS can further be characterized at different points in time as being active or not active, as well as with progression or without progression.

Primary Progressive MS (PPMS)

Approximately 15% of people with MS are diagnosed with PPMS. PPMS is characterized by worsening neurologic function from the onset of symptoms, without early relapses or remissions. PPMS can further be characterized as active or not active, as well as with progression or without progression.

(National MS Society, 2019)

FACTS AND STATS

MS is believed to affect nearly 1 million adults over the age of 18 in the US. Exact prevalence estimates are challenging as MS is not required by healthcare providers to report when a diagnosis is made. MS is at least two to three times more common in women than in men. Most people are diagnosed between the ages of 20-50, although MS can occur in young children and older adults. Prevalence of MS seems to be related to genetic inheritance, geographical location, and ethnicity, but susceptibility rates vary among groups.

(National MS Society, 2019)

CAUSES

While the cause 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, epidemiology, genetics, and infectious agents in an effort to answer this important question. There are four major theories about the causes of MS focusing around the following areas: immunologic, environmental, infectious, and genetic.

(National MS Society, 2019)

PREVENTION

Although there is still no cure for MS, effective strategies are available to modify the disease course, treat exacerbations, manage symptoms, improve function and safety, and provide emotional support.

(National MS Society, 2019)

CHARACTERISTICS

Most people experience their first symptoms of MS between the ages of 20 and 40; the initial symptom of MS 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. These symptoms may be severe enough to impair walking or even standing. In the worst cases, MS can produce partial or complete paralysis. Most people with MS also exhibit paresthesias, transitory abnormal sensory feelings such as numbness, prickling, or "pins and needles" sensations. Some may also experience pain. Speech impediments, tremors, and dizziness are other frequent complaints. Occasionally, people with MS have hearing loss. Approximately half of all people with MS experience cognitive impairments such as difficulties with concentration, attention, memory, and poor judgment, but such symptoms are usually mild and are frequently overlooked. Depression is another common feature of MS.

(National Institute of Neurological Disorders and Stroke, NINDS, 2019)

MS symptoms are variable and unpredictable. No two people have exactly the same symptoms, and each person’s symptoms can change or fluctuate over time. One person might experience only one or two of the possible symptoms while another person experiences many more. Most symptoms can be effectively managed with medication, rehabilitation, or other managements strategies. Over the course of the disease, some symptoms will come and go, while others may be more lasting.

Some of the most common symptoms are:

  • Fatigue
  • Numbness or tingling
  • Weakness
  • Dizziness and vertigo
  • Sexual problems
  • Pain and itching
  • Emotional changes
  • Walking (gait) difficulties
  • Spasticity
  • Vision problems
  • Bladder problems
  • Bowel problems
  • Cognitive changes
  • Depression

Less common symptoms include:

  • Speech problems tremor
  • Breathing problems
  • Swallowing problems
  • Seizures
  • Hearing loss

(National MS Society, 2019)

MEDICAL TREATMENT

Managing MS is an ongoing process, beginning with the very first symptoms and continuing throughout the disease course.

  • Modifying the Disease Course: There are medications approved by the FDA to 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.
  • Treating Exacerbation (relapses): 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, and the use of assistive devices.
  • Promoting Function through Rehabilitation: Rehabilitation programs focus on function and are designed to improve or maintain the ability to perform effectively and safely at home and at work. Rehabilitation may include: physical therapy, occupational therapy, speech therapy, cognitive rehabilitation, and vocational rehabilitation.
  • Complementary approaches to care: maintaining a healthy diet, exercise regimen, effective stress management, and acupuncture are complementary approaches to taking care of oneself and managing symptoms of MS.

(National MS Society, 2019)

PROGNOSIS

A physician may diagnose MS in some patients soon after the onset of illness. In others, however, doctors may not be able to readily identify the cause of the symptoms, leading to years of uncertainty and multiple diagnoses punctuated by baffling symptoms that mysteriously wax and wane. The vast majority of patients are mildly affected, but in the worse cases, MS can render a person unable to write, speak, or walk. MS is a disease with a natural tendency to remit spontaneously, for which there is no universally effective treatment. Currently there is no cure for MS.

(NINDS, 2019)

EDUCATIONAL IMPLICATIONS

Multiple sclerosis can sometimes lead to difficulties with concentration, memory, emotional expression and self-control. It is often hard to tell which emotional or behavioral symptoms are directly caused by MS and which are a response to loss, or to difficulties in coming to terms with the disease and its implications. Symptoms of depression, for instance, can be the result of a variety of physical, psychological and social factors. Treatment must take account of all these aspects, and include psychological assessment, cognitive rehabilitation, counseling and family therapy.

The National Multiple Sclerosis Society created a handbook for school staff as a quick reference about children living with MS. It will help teachers create academic accommodations and communicate with the students’ families.

It is organized into the following sections:

  • Issues that Children & Teens with MS May Face
  • Visible & Invisible MS Symptoms
  • Cognitive Symptoms in Children & Teens with MS
  • Accommodations & Modifications in the School Setting
  • Transition Issues: The World After High School: Transition to College; Transition to Vocational Avenues
  • Appendix: Overview of Multiple Sclerosis n Resources & Publications

While this guide presents general information and suggestions, please be aware that each child and family experiences MS differently. For more information, please contact the National Multiple Sclerosis Society at 1-800-344-4867 (800-FIGHT MS), or on the Web at www.nationalMSsociety.org.

(National MS Society, 2019)

ORGANIZATIONS

National Multiple Sclerosis Society
https://www.nationalmssociety.org
733 Third Avenue, Third Floor
New York, NY 10017
(800) 344-4867

The mission of the National Multiple Sclerosis Society is to end the devastating effects of MS. Founded in 1946, the National Multiple Sclerosis Society supports MS research, offers services for people with MS, provides professional education programs, and furthers MS advocacy efforts. It does this through the extensive research supported to find the cause, cure and improved treatments of the disease; the comprehensive services provided to people with MS and their families; the professional education programs offered to assist health care providers better serve their MS patients; and through advocacy efforts on state and federal levels to encourage public policies supportive of the needs of people with multiple sclerosis.

Multiple Sclerosis Association of America (MSAA)
https://mymsaa.org
375 Kings Highway North
Cherry Hill, New Jersey 08034
800.532.7667
msaa@mymsaa.org

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization dedicated to enriching the quality of life for individuals with multiple sclerosis. MSAA provides ongoing support and direct services to these individuals with MS and the people close to them. MSAA also serves to promote greater understanding of the needs and challenges of those who face physical obstacles.

Multiple Sclerosis Foundation
https://msfocus.org
6520 North Andrews Avenue
Fort Lauderdale, FL 33309
(888)-MSFOCUS (673.6287)
support@msfocus.org

MSF is predominantly a service-based, non-profit organization, and the primary mission is to ensure the best quality of life for those coping with MS by providing comprehensive support and educational programs. They support research into its cause and cure as well as investigations of various medical and complementary treatment options. The scope of services goes beyond that of a clearinghouse of pamphlets. The priority is to serve with empathy, resourcefulness, and responsibility; to listen, assist, and empower.

Last updated March 2020.