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?

GeneticPredisposition

EnvironmentalTrigger

Immune Attack

Loss of myelin & nerve fiber

What happens in MS?

...cross the blood-brain barrier…

…launch attack on myelin & nerve fibers...

“Activated” T cells...

…to obstruct nerve signals

myelinated nerve fibermyelinated nerve fiber

What happens to the myelin and nerve fibers?

What are possible symptoms?

Sensory changes (tingling, numbness)

Pain (neurogenic; musculoskeletal)

Spasticity Gait, balance, and

coordination problems Speech/swallowing

problems Tremor

Fatigue (most common) Visual problems Bladder and/or bowel

dysfunction

Sexual dysfunction Emotional disturbances

(depression, mood swings)

Cognitive difficulties (memory, attention, processing)

MS symptoms vary between individuals and are unpredictable

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 thedifferent patterns (courses) of MS?

• Relapsing-Remitting MS (RRMS)• Secondary Progressive MS (SPMS)• Primary Progressive MS (PPMS)• Progressive-Relapsing MS (PRMS)

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An Overview of Treatment Strategies

Who is on the MS “Treatment Team”?

• Neurologist• Urologist• Nurse• Physiatrist • Physical therapist• Occupational therapist• Speech/language pathologist

• 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

Nystagmus:• Jerky eye

movement• World is

“wiggling”

Optic Neuritis –inflammation of the

opticnerve can cause:• Blurred vision• Dimming of colors• Pain when eye is

moved• Blind spots• Loss of contrast

sensitivity

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

• 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

• 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?

• 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 (1-800-344-

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

Society Resources for Healthcare Professionals

• MS Clinical Care Network Website: www.nationalMSsociety.org/MSClinicalCare

Email: healthprof_info@nmss.org

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