Overview of Multiple Sclerosis - PowerPoint Presentation

Slide1

Overview of Multiple Sclerosis

for Rehabilitation Professionals

1

Updated March, 2017Slide2

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 Slide3

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

Slide4

1396: Earliest Recorded Case of MSSlide5

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

—1

st

MRI image of MS is published.Slide6

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 Slide7

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.Slide8

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 childrenSlide9

What Causes MS?

Genetic

Predisposition

Environmental

Trigger

Immune-mediated Attack

Loss of

Myelin

&

Nerve

F

iberSlide10

What happens in MS?

...cross the blood-brain barrier…

…launch attack on myelin & nerve fibers...

“Activated” T cells...

…to obstruct nerve signals

myelinated

nerve fiber

myelinated

nerve fiberSlide11

What happens to the myelin and nerve fibers?Slide12

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 unpredictableSlide13

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 explanationSlide14

What tests may be used to help

confirm the diagnosis?

Magnetic resonance imaging (MRI)

Visual evoked potentials (VEP)

Lumbar punctureSlide15

Conventional MRI in MS Clinical Practice

15

T2

BOD*

T1

precontrast

Black Holes

†

The strongest correlation with progression of disability

FLAIR

T1

Gd

postcontrast

Disease Activity

†

*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.Slide16

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

)Slide17

What are other known risk factors?

Smoking – active or passive – is known to increase of risk of MS and of disease progression

Obesity in adolescenceLow vitamin D levels

Exposure

to the Epstein-Barr virus?

17Slide18

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

Slide19

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

19Slide20

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

20Slide21

Lublin et al, 2014Slide22

An Overview of Treatment StrategiesSlide23

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 physicianSlide24

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 Slide25

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 supportSlide26

How is the disease course treated?

More than a dozen disease-modifying therapies are FDA-approved for relapsing forms of MS:

d

aclizumab (

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 MSSlide27

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 symptomsSlide28

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

TxSlide29

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-labelSlide30

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 Slide31

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-determinedSlide32

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;

modafinilSlide33

Managing Weakness

Functional electrical stimulation is effective for the treatment of foot drop in some people

Dalfampridine (Ampyra®) helps improve walking speed

33Slide34

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 temperatureSlide35

Managing Visual Impairments

Nystagmus:

Jerky eye movement

World is “wiggling”

Optic Neuritis –

inflammation of the optic

nerve can cause:

Blurred vision

Dimming of colors

Pain when eye is moved

Blind spots

Loss of contrast sensitivitySlide36

Managing Bladder Dysfunction

> 75% of people with MS will experience bladder problems.

Bladder dysfunction is a major cause of morbidity, embarrassment, and social isolation.Slide37

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-catheterizationSlide38

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 incontinenceSlide39

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 weaknessSlide40

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)Slide41

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; counselingSlide42

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)Slide43

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 + exerciseSlide44

Managing Pain

75% of people with MS experience pain

Neuropathic (central) painParoxysmal pain (trigeminal neuralgia; headache)

Anticonvulsants

Continuous pain (

dysesthesias

)

Tricicyclics

; anticonvulsants

Nociceptive (secondary) pain

Musculoskeletal pain

Physical therapy; NSAIDs

Spasticity—As described previously

Slide45

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 neededSlide46

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 neededSlide47

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)Slide48

Serious Complications

Urosepsis

Aspiration pneumonia

Pulmonary dysfunction

Skin breakdown

Untreated depression

OsteoporosisSlide49

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 reactionsSlide50

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 wellnessSlide51

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 supportSlide52

National MS Society Resources for Your Patients

Nationwide network of

offices around the countryWeb 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

52Slide53

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

53