Overview of

Multiple Sclerosis
for Rehabilitation
Professionals

Updated March, 2017

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 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)
• 2017—Today, there are more than a dozen medications
approved in the U.S. for the treatment of MS and more in the
pipeline

Today there are 2.3 million people with MS worldwide

What MS Is:

• MS is considered an immune-mediated disease—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 Environmental
Predisposition Trigger

Immune-mediated 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?

 MS symptoms vary between individuals and are unpredictable

 Fatigue (most common)  Sensory changes

 Visual problems (tingling, numbness)
 Bladder and/or bowel  Pain (neurogenic;
dysfunction musculoskeletal)
 Sexual dysfunction  Spasticity
 Gait, balance, and
 Emotional disturbances
(depression, mood coordination problems
swings)  Speech/swallowing
problems
 Cognitive difficulties  Tremor
(memory, attention,
processing)
 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
 Conventional MRI in MS Clinical Practice

T2
FLAIR BOD*

T1 precontrast
Black Holes†
T1 Gd
postcontrast The strongest
Disease Activity† correlation with
progression of
disability
*Reprinted with permission from Miller DH et al. Magnetic Resonance in Multiple Sclerosis. Cambridge: Cambridge
University Press; 1997. †Reprinted with permission from Noseworthy JH et al. N Engl J Med. 2000;343:938-952. Copyright
© 2003 Massachusetts Medical Society. All rights reserved.

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 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 are other known risk factors?

• Smoking – active or passive – is known to increase of risk of MS

and of disease progression
• Obesity in adolescence
• Low vitamin D levels
• Exposure to the Epstein-Barr virus?

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 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 MS disease courses?

• Clinically isolated syndrome (CIS)

• Relapsing-remitting MS (RRMS)
– About 85% of people are diagnosed with RRMS
• Primary progressive MS (PPMS)
– About 15% of people are diagnosed with this course
• Secondary progressive
– Most people diagnosed with RRMS will eventually transition to
SPMS

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Clinically Isolated Syndrome (CIS)

• A first neurologic event suggestive of demyelination

• Individuals with CIS are at high risk for developing clinically
definite MS if the neurologic event is accompanied by
multiple, clinically silent (asymptomatic) lesions on MRI
typical of MS

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Lublin et al, 2014
An Overview of Treatment Strategies
 Who is on the MS “Treatment Team”?

• Neurologist • Psychiatrist
• Urologist • Psychotherapist
• Nurse • Neuropsychologist
• Physiatrist • Social worker/Care manager
• Physical therapist
• Pharmacist
• Occupational therapist
• Primary care physician
• Speech/language pathologist
 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?
• More than a dozen disease-modifying therapies are FDA-approved for
relapsing forms of MS:
– daclizumab (Zinbryta®) [inj]
– glatiramer acetate (Copaxone®; Glatopa® - generic equivalent) [inj.]
– interferon beta-1a (Avonex®, Plegridy®, Rebif®) [inj.]
– interferon beta-1b (Betaseron® and Extavia®) [inj.]
– dimethyl fumarate (Tecfidera®) [oral]
– fingolimod (Gilenya®) [oral]
– teriflunomide (Aubagio®) [oral]
– alemtuzumab (Lemtrada®) [inf]
– mitoxantrone (Novantrone®) [inf]
– natalizumab (Tysabri®) [inf]
– ocrelizumab (Ocrevus®) [inf]
• Ocrelizumab has also been approved for primary progressive MS
 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
Managing Weakness

• Functional electrical stimulation is effective for the

treatment of foot drop in some people
• Dalfampridine (Ampyra®) helps improve walking
speed

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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:
• 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 or
beta-3 adrenergic agonist; botulinum toxin; pelvic floor PT
• Emptying dysfunction
– Bladder fails to empty  risk of UTI
– Sx include: urgency, frequency, nocturia, incontinence
– Tx includes: intermittent self-catheterization
 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

• Occurs in up to 65% 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

• Depression is one of the most common symptoms of MS (resulting

from immune system changes, neurologic changes and
psychosocial stressors)
• >50% of people with MS will experience a
major depressive episode
• Suicide in MS is 2x higher than in the general population
– Depression is the greatest risk factor for suicide in MS
• 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

• 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
• Manage medical and psychiatric co-morbidities (which are
known to speed MS progression and shorten the lifespan)
• Be aware of common emotional reactions
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?

• 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
National MS Society Resources for Your
Patients

• Nationwide network of offices around the country

• Web site (www.nationalmssociety.org)
• MS Navigator Program for information, support and
referrals (1-800-344-4867)
• Educational programs (in-person, online)
• Support programs (self-help groups, peer and
professional counseling, friendly visitors)
• Consultation (legal, employment, insurance, long-term
care
• Financial assistance

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National MS Society Resources for You

• Professional Resource Center

www.nationalMSsociety.org/PRC
healthprof_info@nmss.org
– Free Diagnosis, Disease and Symptom Management app
– Literature search services
– Professional publications
– Insurance appeal letter toolkit
– Consultation on insurance and long-term care issues
– Quarterly e-newletter

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