Multiple Sclerosis:
An Overview for
Rehabilitation
Specialists
What does MS look like?
• Julia—a 35yo white married mother of 3 who is exhausted all
the time and can’t drive because of vision problems and
numbness in her feet
• Jackson—a 25yo African-American man who stopped
working because he can’t control his bladder or remember
what he read in the morning paper
• Maria—a 10yo Hispanic girl who falls down a lot and whose
parents just told her she has MS
• Loretta—a 47yo white single woman who moved into a
nursing home because she can no longer care for herself
What else does MS look like?
• Sam—a 45yo divorced white man who has looked and felt
fine since he was diagnosed seven years ago
• Karen—a 24yo single white woman who is severely
depressed and worried about losing her job because of her
diagnosis of MS
• Sandra—a 30yo single mother of two who experiences
severe burning pain in her legs and feet
• Richard—who was found on autopsy at age 76 to have MS
but never knew it
• Jeannette—whose tremors are so severe that she cannot
feed herself
1396: Earliest Recorded Case of MS
From Sister Lidwina to the present…
• 1868—Jean-Martin Charcot describes the disease and
finds MS plaques (scars) on autopsy.
• 1878—Louis Ranvier describes the myelin sheath (the
primary target of MS in the central nervous system).
“Multiple sclerosis is often one of the most difficult
problems in clinical medicine.” (Charcot, 1894)
“When more is known of the causes and…pathology of the
disease… more rational methods may brighten the
therapeutic prospect.” (Gowers, 1898)
• 1981—1st MRI image of MS is published.
From Sister Lidwina to the present, cont’d
• 1993—The first disease-modifying agent for MS—
Betaseron—is approved in the U.S.
• 1998—Bruce Trapp confirms that the nerve fibers
themselves are irreversibly damaged early in the
disease course (probably accounting for the permanent
disability that can occur).
• 2009—Today, there are several medications approved in
the U.S. for the treatment of MS and more in the pipeline.
Today there are 400,000 people with MS in the U.S.
and 2.5 million worldwide.
What MS Is:
• MS is thought to be a disease of the immune system—
perhaps autoimmune.
• The immune system attacks the myelin coating around
the nerves in the central nervous system (CNS—brain,
spinal cord, and optic nerves) and the nerve fibers
themselves.
• Its name comes from the scarring caused by
inflammatory attacks at multiple sites in the central
nervous system.
What MS Is Not:
• MS is not:
 Contagious
 Directly inherited
 Always severely disabling
 Fatal—except in fairly rare instances
• Being diagnosed with MS is not a reason to:
 Stop working
 Stop doing things that one enjoys
 Not have children
What Causes MS?
Genetic
Predisposition
Environmental
Trigger
Immune Attack
Loss of myelin
& nerve fiber
What happens in MS?
“Activated” T cells...
...cross the blood-brain barrier…
…launch attack on myelin & nerve fibers...
…to obstruct nerve signals
myelinated nerve fiber
myelinated nerve fiber
What happens
to the myelin and nerve fibers?
What are possible symptoms?
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MS symptoms vary between individuals and are unpredictable
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Fatigue (most common)
Visual problems
Bladder and/or bowel
dysfunction
Sexual dysfunction
Emotional disturbances
(depression, mood swings)
Cognitive difficulties
(memory, attention,
processing)
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Sensory changes
(tingling, numbness)
Pain (neurogenic;
musculoskeletal)
Spasticity
Gait, balance, and
coordination problems
Speech/swallowing
problems
Tremor
How is MS diagnosed?
• MS is a clinical diagnosis:
 Signs and symptoms
 Medical history
 Laboratory tests
• Requires dissemination in time and space:
 Space: Evidence of scarring (plaques) in at least
two separate areas of the CNS
 Time: Evidence that the plaques occurred at
different points in time
• There must be no other explanation
What tests may be used to help
confirm the diagnosis?
• Magnetic resonance imaging
(MRI)
• Visual evoked potentials (VEP)
• Lumbar puncture
What is the genetic factor?
• The risk of getting MS is approximately:
 1/750 for the general population (0.1%)
 1/40 for person with a close relative with MS (3%)
 1/4 for an identical twin (25%)
• 20% of people with MS have a blood relative with MS
The risk is higher in any family in which there are several
family members with the disease (aka multiplex families)
What is the prognosis?
• One hallmark of MS is its unpredictability.
 Approximately 1/3 will have a very mild course
 Approximately 1/3 will have a moderate course
 Approximately 1/3 will become more disabled
• Certain characteristics predict a better outcome:
 Female
 Onset before age 35
 Sensory symptoms
 Monofocal rather than multifocal episodes
 Complete recovery following a relapse
What are the
different patterns (courses) of MS?
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Relapsing-Remitting MS (RRMS)
Secondary Progressive MS (SPMS)
Primary Progressive MS (PPMS)
Progressive-Relapsing MS (PRMS)
Increasing disability
Relapsing-Remitting MS
time
Increasing disability
Secondary-Progressive MS
time
Increasing disability
Primary-Progressive MS
time
Increasing disability
Progressive-Relapsing MS
time
An Overview of Treatment Strategies
Who is on the MS “Treatment Team”?
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Neurologist
Urologist
Nurse
Physiatrist
Physical therapist
Occupational therapist
Speech/language pathologist
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Psychiatrist
Psychotherapist
Neuropsychologist
Social worker/Care manager
Pharmacist
Primary care physician
What are the treatment strategies?
• Gone are the “Diagnose and Adios” days of MS care
• Management of MS falls into five general categories:
 Treatment of relapses (aka exacerbations, flare-ups,
attacks—that last at least 24 hours)
 Symptom management
 Disease modification
 Rehabilitation (to maintain/improve function)
 Psychosocial support
How are relapses treated?
• Not all relapses require treatment
 Mild, sensory sx are allowed to resolve on their own.
 Sx that interfere with function (e.g., visual or walking
problems) are usually treated
• 3-5 day course of IV methylprednisolone—with/without an oral
taper of prednisone
 High-dose oral steroids used by some neurologists
• Rehabilitation to restore lost function
• Psychosocial support
How is the disease course treated?
• Ten disease-modifying therapies are FDA-approved for relapsing
forms of MS:
 interferon beta-1a (Avonex® and Rebif®) [inj.]
 interferon beta-1b (Betaseron® and Extavia®) [inj.]
 glatiramer acetate (Copaxone®) [inj.]
 fingolimod (Gilenya™) [oral]
 teriflunomide (Aubagio®) [oral]
 dimethyl fumarate (Tecfidera™) [oral
 natalizumab (Tysabri®) [inf]
 mitoxantrone (Novantrone®) [inf]
What do the disease-modifying
drugs do?
• All reduce attack frequency and severity, reduce scarring on
MRI, and probably slow disease progression.
• These medications do not:
 Cure the disease
 Make people feel better
 Alleviate symptoms
How important is early treatment?
• The Society’s National Medical Advisory Committee
recommends that treatment be considered as soon as a dx of
relapsing MS has been confirmed.
 Irreversible damage to axons occurs even in the earliest
stages of the illness.
 Tx is most effective during early, inflammatory phase
 Tx is least effective during later, neurodegenerative phase
• No treatment has been approved for primary-progressive MS.
Approximately 60% of PwMS are on Tx
How are MS symptoms managed?
• Symptom management continues throughout the
disease course
• Effective symptom management involves a combination of
medication, rehabilitation strategies, emotional support—
and good coordination of care
• Virtually every medication used to treat MS symptoms is
used off-label
What role does rehabilitation play?
• Structured, problem-focused, interdisciplinary
interventions to:
 Enhance/maintain function, comfort, safety, and
independence over the course of the disease
 Educate for self-management and behavior change
 Identify appropriate assistive devices and environmental
modifications
 Prevent injuries and unnecessary complications
 Empower individual and family
Managing MS Fatigue
• > 80% of people with MS experience fatigue; many identify it
as their most disabling symptom
• Along with cognitive dysfunction, fatigue is the most
common cause of early departure from the workforce
• MS fatigue is easily misunderstood by family members and
employers as laziness or disinterest
• MS fatigue is multi-determined
Managing MS Fatigue, cont’d
• Identify/address contributory factors
 Disrupted sleep; muscle fatigue; disability-related
fatigue; depression; medications
• Develop comprehensive treatment plan
 Energy conservation: planning/prioritizing; mobility
aids; environmental modifications
 Exercise regimen
 Medications: amantadine; modafinil
A Word about Temperature Sensitivity
• 70-80% experience heat sensitivity
• 20% experience cold sensitivity
• Slight elevations in core body temperature (related to
ambient temperature, exercise, fever) can cause temporary
worsening of MS symptoms—a pseudoexacerbation
• Cooling strategies (A/C, scarves, vests, cold liquids, cool
showers) can help maintain core body temperature
Managing Visual Impairments
Optic Neuritis –
inflammation of the optic
nerve can cause:
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Blurred vision
Dimming of colors
Pain when eye is moved
Blind spots
Loss of contrast sensitivity
Nystagmus:
• Jerky eye movement
• World is “wiggling”
Managing Bladder Dysfunction
• > 75% of people with MS will experience bladder problems.
• Bladder dysfunction is a major cause of morbidity,
embarrassment, and social isolation.
Managing Bladder Dysfunction
• Storage dysfunction
 Small, spastic bladder in which small quantity of urine
triggers the urge to void
 Sx include: urgency, frequency, incontinence, nocturia
 Tx includes: anticiholinergic/antimuscarinic
medication
• Emptying dysfunction
 Bladder fails to empty  risk of UTI
 Sx include: urgency, frequency, nocturia, incontinence
 Tx includes: ISC and anticholinergic/antimuscarinic
medications
Managing Bowel Problems
• Experienced by 50% of people with MS
 Constipation—most common
- Loose stool (related to impaction)
 Bowel incontinence—least common
• Managed best with regular bowel routine
 Adequate fluid/fiber intake
 Exercise
 OTC products as needed
 Anticholinergic medications added to
manage incontinence
Managing Spasticity
• Experienced by 40-60% of people with MS
(more common in the lower extremities)
• Management strategies:
 Stretching
 Oral medication (baclofen, tizanidine, clonazapam,
gabapentin, cyproheptidine, dantrolene,
dopaminergic agonists)
 Baclofen pump
 Botox injections; nerve blocks; surgery
• Some spasticity is useful to counteract weakness
Managing Primary Sexual Dysfunction
• 40-80% of men and women with MS
 Reduced libido (behavioral/environmental strategies)
 Sensory disturbances (anticonvulsant medications)
 Anorgasmia (body-mapping exercises)
• Women
 Reduced lubrication (gels)
• Men
 Erectile dysfunction (pharmacotherapy;
implants)
Managing Secondary/Tertiary Sexual
Dysfunction
• Secondary dysfunction (other contributory factors)
 Managing MS symptoms that interfere with sexual
activity/pleasure (fatigue, spasticity, bladder dysfunction)
 Managing medications to promote sexual comfort and
responsiveness (anticholinergics; antidepressants; fatigue
and spasticity meds)
• Tertiary dysfunction (feeling; attitudes)
• Education; counseling
Managing Cognitive Dysfunction
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Occurs in 50-60% of people with MS
Ranges from relatively mild to quite severe
Correlates with lesion #, lesion area, and brain atrophy
Can occur at any time in the course of the disease
Can occur with any disease course
Being in an exacerbation is a risk factor for cognitive
dysfunction
• Most common problems: memory; attention/concentration;
information processing
• Treatments:
 Disease-modifying therapy to reduce relapses
 Cognitive rehabilitation (primarily compensatory)
Managing Depression
• >50% of people with MS will experience a
major depressive episode
• Suicide in MS is 7x higher than in the general population
 Greatest risk factor for suicide in MS is depression.
• Depression is under-recognized, under- diagnosed and
under-treated in MS
• Depression can impact cognitive function
• Recommended treatment:
psychotherapy + medication + exercise
Managing Pain
• 75% of people with MS experience pain
• Neuropathic (central) pain
 Paroxysmal pain (trigeminal neuralgia; headache)
• Anticonvulsants
 Continuous pain (dysesthesias)
• Tricicyclics; anticonvulsants
• Nociceptive (secondary) pain
 Musculoskeletal pain
 Physical therapy; NSAIDs
 Spasticity—As described previously
Managing Speech Problems
• 40-50% experience speech/voice disorders
 Dysarthria – impaired volume control, articulation,
emphasis
 Dysphonia – altered voice quality, pitch control,
breathiness, hoarseness
• Speech/language assessment:
 Oral peripheral examination
 Voice evaluation
 Communication profile
• Treatment:
 Exercises
 Strategies and compensatory techniques to improve
speech clarity
 Augmentative device or ACC, if needed
Managing Swallowing Problems
(Dysphagia)
• One of the less common MS symptoms
• Swallowing assessment
 Clinical history
 Examination
 Videofluoroscopy (modified barium swallow)
• Treatment
 Exercises
 Dietary modifications/positioning while eating/chewing
strategies
 Non-oral feeding options, if needed
Managing Ataxia/Tremor
• One of the less common MS symptoms
• Potentially severely disabling
• No effective treatments at this time
 Medications that may be tried:
• propranolol; primidone; acetazolamide; buspirone;
clonazepam
 Occupational therapy
• Weighting; assistive devices
 Thalamic surgery for tremor (generally poor results)
Serious Complications
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Urosepsis
Aspiration pneumonia
Pulmonary dysfunction
Skin breakdown
Untreated depression
Osteoporosis
What can people do to feel their best?
• Balance activity with rest.
• Talk with their rehabilitation professional about the right
type/amount of exercise for them.
• Eat a balanced low-fat, high-fiber diet.
• Avoid heat if they are heat-sensitive.
• Drink plenty of fluids to maintain bladder health and
avoid constipation.
• Follow the standard preventive health measures
recommended for their age group
What else can people do to feel their best?
• Reach out to their support system; no one needs to be
alone in coping with MS.
• Stay connected with others; avoid isolation.
• Become an educated consumer.
• Make thoughtful decisions regarding:
 Disclosure
 Choice of physician
 Employment choices
 Financial planning
 Health and wellness
So what do we know about MS?
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MS is a chronic, unpredictable disease
The cause is still unknown
MS affects each person differently; symptoms vary widely
MS is not fatal, contagious, directly inherited, or always
disabling
• Early diagnosis and treatment are important
 Significant, irreversible damage can occur early on
 Available treatments reduce the number of relapses and may
slow progression
• Treatment includes: attack management, symptom management,
disease modification, rehab, emotional support
Society Resources for People with MS
• 40+ chapters around the country
• Web site (www.nationalMSsociety.org)
• Access to information, referrals, support (1-800-3444867)
• Educational programs (in-person, online)
• Support programs (self-help groups, peer and
professional counseling, friendly visitors)
• Consultation (legal, employment, insurance, longterm care)
• Financial assistance
Society Resources for
Healthcare Professionals
• MS Clinical Care Network
Website: www.nationalMSsociety.org/MSClinicalCare
Email: healthprof_info@nmss.org
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Clinical consultations with MS specialists
Literature search services
Professional publications
Quarterly e-newsletter for professionals
Professional education programs (medical,
rehab, nursing, mental health)
 Consultation on insurance and long-term care
issues