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GLOSSARY Glossary adapted with permission from R. Kalb (ed.) : The Questions You Have: The Answers You Need (5th ed.) New York: Demos Medical Publishing, 2012. This glossary is available in its entirety (as well as additional MS terms) online at nationalMSsociety.org/glossary.

106 | KNOWLEDGE IS POWER 106 | KNOWLEDGE IS POWER Americans with Disabilities Act - barrier (ADA)

A semi-permeable layer around The first comprehensive legislation blood vessels in the brain and spinal to prohibit discrimination on the cord that prevents large molecules, basis of disability. The ADA (passed immune cells, and potentially in 1990) guarantees full participation damaging substances and disease- in society to people with disabilities. causing organisms (e.g., ) from The four areas of social activity passing out of the blood stream into the covered by the ADA are employment; central (brain, spinal public services and accommodations; cord and optic ). A break in the transportation; and communications blood-brain barrier may underlie the Autoimmune(e.g., telephone disease services). Centraldisease process nervous in system MS.

A process in which the body’s immune The part of the nervous system that system causes illness by mistakenly includes the brain, optic nerves, and attacking healthy cells, organs or tissues Cerebrospinalspinal cord. fluid (CSF) in the body that are essential for good health. In multiple sclerosis, the specific antigen — or target — that the immune A watery, colorless, clear fluid that cells are sensitized to attack remains bathes and protects the brain and unknown, which is why MS is considered . The composition of this by many experts to be “immune- fluid can be altered by a variety of Axonmediated” rather than “autoimmune.” diseases. Certain changes in CSF that are characteristic of MS can be detected with a lumbar punctureSee The extension or prolongation of a Lumbar(spinal tap), puncture a test sometimes used cell () that conducts impulses to to help make the MS diagnosis. Axonalother nerve damage cells or muscles. Chronic . see

Injury to the axon ( ) in Of long duration, not acute; a term the nervous system. In addition to often used to describe a disease that damaging the coating around Clinicallyshows gradual isolated worsening. syndrome (CIS) nerve fibers, MS is known to damage or even sever the underlying nerve fibers as well. This irreversible damage A first neurologic event that is can occur at any point in the disease, suggestive of demyelination, even during the earliest phases. GLOSSARY | 107 accompanied by multiple, clinically of physical trauma or disease. ‘silent’ (asymptomatic) lesions on Rehabilitation strategies are designed MRI that are typical of MS. Individuals to improve the impaired function with this syndrome are at high risk for via repetitive drills or practice, or to Clinicaldeveloping trial clinically definite MS. compensate for impaired functions that are not likely to improve. Cognitive rehabilitation is provided by and neuropsychologists, Rigorously controlled study designed / pathologists, and to provide extensive data that allow occupational therapists. While these for statisticallySee alsovalid Double-blind evaluation of specialists use different assessment clinicalthe safety study; and efficacy Placebo of a particular tools and treatment strategies, they treatment. share the common goal of improving . the individual’s ability to function Seeas Neuropsychologist;independently and safely Occupational as possible in therapist;the home and Speech/language work environment. High level functions carried out by the pathologist brain, including comprehension and use of speech, visual Controlled study. and construction, calculation ability, (information processing), See Placebo-controlled clinical trial. , and such as , problem-solving and Cognitiveself-monitoring. impairment Any of the natural or synthetic hormones associated with the adrenal Changes in cognitive function caused (which influences or controls by trauma or disease process. Some many body processes). degree of cognitive impairment occurs include , which in approximately 50 to 60 percent have an anti inflammatory and of people with MS, with memory, See also Glucocorticoids.immunosuppressive role in the information processing,See Cognition and executive treatment of MS relapses. functions being the most commonly Demyelination Cognitiveaffected functions. remediation . (also called cognitive rehabilitation) A loss of myelin in the of the (brain, Techniques designed to improve the spinal cord). functioning of individuals whose cognition is impaired because 108 | KNOWLEDGE IS POWER Disability

Occasional plateaus and minor, As defined by the World Health temporary improvements may occur. Organization, a disability (resulting Approximately 15 percent of people from a physical or mental impairment) • Sareecondary diagnosed progressive with this disease MS course. is a restriction or lack of ability to perform an activity in the manner or begins within the range considered normal initially with a relapsing-remitting for a human being. course that later evolves into a more Disease course consistently progressive course, (also referred to as disease types) Double-blindwith or without relapses.

There are four basic disease courses Refers to a clinical trial in which none of in• MS:Clinically isolated syndrome the participants, including experimental subjects, examining doctors, attending nurses, or any other research staff, is a first episode of neurologic know who is taking the test agent and symptoms caused by who is taking a control or placebo and demyelination in the central agent. The purpose of this research nervous system. A person who design is to avoid unintentional bias experiences clinically isolated of the test results. In all studies, syndrome may or may not go on to procedures are designed to ‘break the develop MS, with the chances being See Placebo; Placebo-controlled blind’ if medical circumstances require higher in someone who has lesions clinical trial it. on MRI that are similar to those • Relapsing-remitting MS . seen in MS. Evoked potentials (EPs) is characterized by clearly defined relapses (also called attacks or EPs are recordings of the nervous exacerbations) that last from days system’s electrical response to the to weeks and then subside, with full stimulation of specific sensory pathways or partial recovery and no apparent (e.g., visual, auditory, general sensory). disease progression between attacks. In tests of evoked potentials, a person’s recorded responses are displayed on an • PrimaryApproximately progressive 85 percent MS of people begin with this disease course. oscilloscope and analyzed on a computer that allows comparison with normal is response times. Demyelination results characterized by a gradual but in a slowing of response time. EPs can steady progression of disability demonstrate lesions along specific nerve from the onset of symptoms, pathways whether or not the lesions are with no relapses or remissions. producing symptoms, thus making this GLOSSARY | 109 Gadolinium-enhancing lesion test useful in confirming the diagnosis Seeof MS. Visual Visual evoked . potentials are A lesion appearing on magnetic considered the most useful in MS. resonance imagery, following injection Exacerbation of the chemical compound gadolinium, See Relapse. that reveals a breakdown in the blood- brain barrier. This breakdown of the blood-brain barrier indicates either a Failure to empty (bladder) See Gadolinium newly active lesion or the re-activation Glucocorticoidof an old one. hormones . A type of bladder dysfunction in MS resulting from demyelination in the voiding center of the spinal Steroid hormones that are produced cord. The bladder tends to overfill and by the adrenal glands in response to become flaccid, resulting in symptoms stimulation by adrenocorticotropic of urinary urgency, hesitancy, dribbling hormone (ACTH) from the pituitary. These hormones, which can also Failureand incontinence. to store (bladder) be manufactured synthetically (prednisone, prednisolone, methylprednisolone, betamethasone, A type of bladder dysfunction in MS ), serve both an resulting from demyelination of the immunosuppressive and an anti- pathways between the spinal cord and inflammatory role in the treatment brain. Typically seen in a small, spastic of MS exacerbations: they damage or bladder, storage failure can cause destroy certain types of T- symptoms of urinary urgency, frequency, that are involved in the overactive incontinence and nocturia (getting up immune response, and interfere with FDAfrequently at night to urinate). the release of certain inflammation- See U.S. Food and Immuneproducing system enzymes. Administration (FDA).

Gadolinium A complex network of glands, tissues, circulating cells, and processes that protect the body by identifying A chemical compound that can be abnormal or foreign substances and administered to a person during Immune-mediatedneutralizing them. disease magnetic resonance imaging to help distinguish between new lesions and old lesions. The gadolinium causes new A disease in which components of the or active lesions to appear very bright. — t-cells, antibodies, 110 | KNOWLEDGE IS POWER Lassitude and others — are responsible for the disease either directly (as occurs A term that is used for the type of in ) or indirectly (for fatigue that seems to be unique to MS, example, when damage to the body often described as an overwhelming occurs secondary to an immune tiredness that seems unrelated to assault on a foreign antigen such as a activity level or time of day. Lassitude Informationbacteria or ). processing is to result from demyelination Lesionin the central nervous system.

One of the cognitive functions that can be affected in MS. The ability to take An area of inflamedSee or Gadolinium; demyelinated in and respond to incoming stimuli Gadolinium-enhancingcentral nervous system tissue lesion. (also from the environment (through vision, called a plaque). , touch, , etc.) may be Long-term disability policy Infusionslowed in people with MS.

A private or employer-based, income- The process by which some protection insurance that replaces are delivered directly into a . The a percentage of income lost once a , which is contained in a person becomes too disabled to work plastic bag suspended on a pole, is at his or her job. While three months forced by gravity to travel down a tube is a common waiting period, the and through a needle inserted in the Seerequirements Short-term vary disability from policy policy to policy. Jobvein accommodations (usually in the arm). Benefits generally continue to age 65. .

Under the Americans with Disabilities Act (ADA), an employment-related A diagnostic procedure that uses a change that an employer is required hollow needle (canula) to penetrate to make in order to ensure equal the spinal canal at the level of third/ opportunity for a person with a fourth or fourth/fifth lumbar vertebrae disability. Job accommodations for to remove for people with MS might include: a analysis. This procedure is used to modified work schedule, provision of examine the cerebrospinal fluid for specialized equipment, renovation of changes in composition that are doorways or bathrooms to accommodate characteristic of MS (e.g., elevated white a person in a motorized scooter. cell count, elevated protein content, the presence of oligoclonal bands).

GLOSSARY | 111

nerve fiber conduction is faulty or A type of that is part of absent. Impaired bodily functions or the immune system. Lymphocytes can altered sensations associated with be subdivided into two main groups: those demyelinated nerve fibers B-lymphocytes, which originate in the are identified as symptoms of MS in marrow and produce antibodies; Nervevarious parts of the body. T-lymphocytes, which are produced in the and mature in the . Helper T-lymphocytes A bundle of nerve fibers (). The heighten the production of antibodies fibers are either afferent (leading by B-lymphocytes; suppressor toward the brain and serving in the T-lymphocytes suppress B-lymphocyte perception of sensory stimuli of the activity and seem to be in short supply skin, , muscles, and inner organs) Magneticduring an MSresonance exacerbation. imaging (MRI) or efferent (leading away from the brain and mediating contractions of Nervousmuscles or system organs). A diagnostic procedure that produces visual images of different body parts without the use of X-rays. Nuclei Includes all of the neural structures in of atoms are influenced by a high the body: the central nervous system frequency electromagnetic consists of the brain, spinal cord and inside a strong magnetic field. The optic nerves; the peripheral nervous nuclei then give off resonating signals system consists of the nerve roots, nerve that can produce pictures of parts of Neurologistplexi and nerves throughout the body. the body. An important diagnostic tool in MS, MRI makes it possible to visualize and count lesions in the white MRImatter of the brain and spinal cord. Physician who specializes in the diagnosis and treatment of conditions See Magnetic resonance imaging. Neurologyrelated to the nervous system. Myelin Study of the central, peripheral and central nervous system autonomic nervous systems. A soft, white coating of nerve fibers Neuron in the , composed of lipids (fats) and protein. Myelin serves as insulation and as an The basic nerve cell of the nervous aid to efficient nerve fiber conduction. system. A neuron consists of a When myelin is damaged in MS, within a cell body and one or 112 | KNOWLEDGE IS POWER more processes (extensions) called Neuropsychologistdendrites and axons. A type of cell in the central nervous system that is responsible for making Opticand supporting neuritis myelin. A with specialized training in the evaluation of cognitive functions. Neuropsychologists use Inflammation or demyelination of the a battery of standardized tests to optic (visual) nerve with transient or assess specific cognitive functions and permanent impairment of vision and identify areas of cognitive impairment. Physiatristoccasionally . They also provideSee Cognition; remediation Cognitive for impairment.individuals with MS-related cognitive impairment. Physicians who specialize in physical (OT) medicine and rehabilitation, including the diagnosis and management of musculoskeletal injuries and pain Occupational therapists assess syndromes, electro-diagnostic functioning in activities of everyday medicine (e.g., electromyography), and living, including , bathing, rehabilitation of severe impairments, grooming, meal preparation, writing including those caused by neurologic and driving, which are essential disease or injury. for independent living. In making Physical therapist (PT) treatment recommendations, the OT addresses 1) fatigue management, 2) upper body strength, movement Physical therapists are trained to and coordination, 3) adaptations to evaluate and improve movement and the home and work environment, function of the body, with particular including both structural changes and attention to physical mobility, balance, specialized equipment for particular posture, fatigue and pain. The physical activities, and 4) compensatory therapy program typically involves 1) strategies for impairments in thinking, educating the person with MS about the physical problems caused by the Oligoclonalsensation or bandsvision. disease, 2) designing an individualized exercise program to address the problems, and 3) enhancing mobility A diagnostic sign indicating abnormal and energy conservation through the levels of certain antibodies in use of a variety of mobility aids and the cerebrospinal fluid; seen in adaptive equipment. approximately 90 percent of people with MS, but not limited to MS. GLOSSARY | 113 Placebo Rehabilitation

An inactive, non-drug compound that Rehabilitation in MS involves is designed to look just like the test the intermittent or ongoing use agent. It is administered to control of multidisciplinary strategies group subjects in double-blind clinical (e.g., physiatry, , trials (in which neither the researchers occupational therapy, speech therapy) nor the subjects know who is getting to promote functional independence, the treatment and who is getting prevent unnecessary complications, the placebo) as a means of assessing and enhance overall quality of life. It the benefits and liabilities of the test is an active process directed toward treatment taken by experimental helping the person recover and/ Placebo-controlledgroup subjects. clinical trial or maintain the highest possible level of functioning and realize his or her optimal physical, mental and social potential given any limitations A clinical trial that compares the that exist. Rehabilitation is also outcome of a group of randomly- an interactive, ongoing process of assigned patients who receive the education and enablement in which experimental treatment to the people with MS and their care partners outcome of a group of randomly- are active participants rather than assigned patients who receive an passive recipients. inactive placebo. For an experimental Relapse treatment to be shown effective, the group receiving the treatment must do significantly better, over a pre- The appearance of new symptoms or determined period of time, than the the aggravation of old ones, lasting Primary-progressivegroup receiving the placebo. MS at least 24 hours (synonymous with attack, exacerbation, flare-up or See Disease course. worsening); usually associated with inflammation and demyelination in the Pseudo-exacerbation Relapsing-remittingbrain or spinal cord. MS See Disease course. A temporary aggravation of disease symptoms, resulting from an elevation Remission in body or other stressor (e.g., an , severe fatigue, constipation), that disappears once A lessening in the severity of symptoms the stressor is removed. A pseudo- or their temporary disappearance exacerbation involves symptom during the course of the illness. flare-up rather than new disease activity or progression. 114 | KNOWLEDGE IS POWER Sclerosis Spasticity

Hardening of tissue or scarring that A common symptom of MS that can occurs in areas where the myelin include feelings of stiffness and a wide coating around nerve fibers in the range of involuntary muscle spasms central nervous system is damaged (sustained muscle contractions or Secondary-progressiveor destroyed. MS sudden movements). Spasticity may be as mild as the feeling of tightness See Disease course. of muscles or may be so severe as to produce painful uncontrollable spasms Sensory of extremities, usually of the legs. It may also produce feelings of pain or tightness in and around joints, and Related to bodily sensations such Speech/languagecause low back pain. pathologist as pain, smell, taste, temperature, vision, hearing, acceleration, and position in space. Short-term disability policy Speech/language pathologists specialize in the diagnosis and treatment of speech and swallowing An employer-based income-protection disorders. Because of their expertise insurance that replacesSee aLong-term percentage with speech and language difficulties, disabilityof income lostpolicy. during a brief illness or these specialists also provide cognitive period of disability. remediation for individuals with Sign Spinalcognitive tap impairment. See Lumbar puncture.

An objective physical problem Symptom or abnormality identified by the physician during the neurologic examination. Neurologic signs may A subjectively perceived problem or differ significantly from the symptoms complaint reported by the patient. In reported by the patient because they MS, common symptoms include visual are identifiable only with specific tests problems, fatigue, sensory changes, and may cause no overt symptoms. weakness or paralysis of limbs, , Common neurologic signs in MS lack of coordination, poor balance, include altered eye movements and bladder or bowel changes, and other changes in the appearance psychological changes. or function of the visual system; altered ; weakness; spasticity; circumscribed sensory changes.

GLOSSARY | 115 T-cell

as well as identify the presence of an A lymphocyte (white blood cell) that unsuspected lesion that has produced develops in the bone marrow, matures no symptoms, it is extremely useful in in the thymus, and works as part of the diagnosing MS. VEPs are abnormal in approximately 90 percent of people Urologistimmune system in the body. Vocationalwith MS. rehabilitation (VR)

A physician who specializes in the branch of medicine (urology) Vocational rehabilitation is a program concerned with the , of services designed to enable people physiology, disorders, and care of the with disabilities to become or remain male and female urinary tract, as well employed. Originally mandated by the Rehabilitation Act of 1973, VR U.S.as the Food male and genital Drug tract. Administration programs are most often carried out by (FDA) state agencies. In order to be eligible for VR, a person must have a physical or mental disability that results in a The U.S. federal agency that is substantial handicap to employment. responsible for enforcing governmental VR programs typically involve regulations pertaining to the evaluation of the disability and need manufacture and sale of food, for adaptive equipment or mobility and cosmetics. Its role is to prevent the aids, vocational guidance, training, sale of impure or dangerous substances. Whitejob-placement, matter and follow-up. Any new agent that is proposed for the treatment of MS in the U.S. must be approved by the FDA. Visual evoked potential (VEP) The part of the brain that contains myelinated nerve fibers and appears white, in contrast to the cortex of the A test in which the brain’s electrical brain, which contains nerve cell bodies activity in response to visual stimuli and appears gray. (e.g., a flashing checkerboard) is recorded by an electroencephalograph and analyzed by computer. Demyelination results in a slowing of response time. Because this test is able to confirm the presence of a suspected brain lesion (area of demyelination)

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