Multiple Sclerosis: An Overview of the Disease and Its Impact on Individuals and Families

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

19th Century Highlights

MS-related central nervous system pathology—Jean Cruveilhier, c 1841

Jean-Martin Charcot (1825–1893)described features of MS

What MS Is:

• MS is thought to be a disease of the immune system. • The immune system damages 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?

Cognitive difficulties (memory, attention, processing)

Pain (neurogenic) Heat sensitivity Spasticity Gait, balance, and

coordination problems Speech/swallowing

problems Tremor

Fatigue (most common) Decreased visual acuity,

diplopia Bladder and/or bowel

dysfunction

Sexual dysfunction Paresthesias (tingling,

(numbness, burning) Emotional disturbances

(depression, mood swings)

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 (space) 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

Who gets MS?

• Usually diagnosed between 20 and 50 Occasionally diagnosed in young children and older adults

• More common in women than men (2-3:1)• Most common in those of Northern European ancestry

More common in Caucasians than Hispanics or African Americans; rare among Asians

• More common in temperate areas (further from the equator)

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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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

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 (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/maintain function• Psychosocial support

How is the disease course treated?

• Nine disease-modifying therapies are FDA-approved for relapsing forms of MS: fingolimod (Gilenya®) [oral] interferon beta-1a (Avonex® and Rebif®) [inj.] interferon beta-1b (Betaseron® and Extavia®) [inj.] glatiramer acetate (Copaxone®) [inj.] natalizumab (Tysabri®) [inf] mitoxantrone (Novantrone®) [inf] teriflunomide (Aubagio®) [oral]

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 Clinical Advisory Board 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

So what do we know about MS?

• MS is a chronic, unpredictable disease. • The cause of MS 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: relapse management,

symptom management, disease modification, rehabilitation, emotional support.

What 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

• Be aware of common emotional reactions.

Why is MS such a challenging disease?

Multiple sclerosis: Is a chronic disease with no known cure or completely

effective treatments Is variable and unpredictable—with no clear roadmap Involves ongoing change and loss Is very expensive Confronts people with complex choices for which the

right and wrong options aren’t clearly marked

What are the most common feelings among people living with MS?

• Grief: normal reaction to any loss Of self, personal identity, feelings of autonomy and control,

skills/abilities• Anxiety: common response to unpredictability• Anger: common response to unpredictability and loss of control• Guilt: over letting others down; over angry feelings (toward partners,

doctors, and God)

These reactions will ebb and flow with the ups and downs of the disease course

What is there to grieve about?

MS is a new piece that needs to find its place in the puzzle

Kalb, 2008

What else is there to grieve about?

Every time that MS changes the things a person is able to do, or changes the way he or she has to do,

grieving is the first—and necessary—response.

Letting go of the past is the first step toward managing the present and planning for the future.

What are the major challenges for the person newly-diagnosed with MS?

• Dealing with invisible sx: “But you look so good!” People seldom feel as good as they look

• Finding the right doctor Locating an MS specialist Finding a doctor to “partner” with

• Making difficult treatment decisions “When should I start treatment?” “Which medication is the right one for me?”

• Making disclosure decisions Why, whom, what, and when to tell

And as if those weren’t enough, here are some more….

• Dealing with the reactions of others Being ready to explain, comfort, explain again

• Identifying/communicating one’s needs to others Recognizing that others can’t read one’s mind

• Building a support network Family, friends, community resources, and the NMSS

• Beginning to plan for uncertainty Maintaining employment Financial planning

What are the major challenges for the person with transitional MS?

• Finding meaning in disease progression Lousy luck

• “I got dealt a bad hand.” Personal failure

• “I must not be trying…

praying…exercising enough.” Weakness

• “I’m not strong enough to fight this.” Punishment

• “I must have done something bad.”

More Challenges for the Person with Transitional MS

• Resistance “I don’t feel any better and my MS

is worse, so why take shots all the time?”• Turning to “miracle cures”• Inability to perform major roles • Need for more planning/problem-solving• Impacted by depression and cognitive symptoms

What are the major challenges for the person with advanced MS?

• The grief work continues;

more progression more loss

• Re-defining ideas of self, control, and independence

• Finding the MS-free zone

• …the part that MS can’t touch

Every person needs to find his or her MS-free zone

Kalb et al., 2007

Progressive, Disabling MS, cont’d

• Identifying new goals, directions, areas of focus

• Coping with caregiving challenges

• Dealing with long-term care options

What do we know about depression in MS?

• Differs from normal grieving• Can be challenging to diagnose in MS because of overlapping

symptoms• People with MS are at greater risk for depression than:

the general population people with other chronic diseases

• 50+% of people will experience a major depressive episode at some point over the course of the disease. At-risk points: diagnosis, relapses, major transitions, any time

• Suicide is 7.5x more common in MS than in general population (Sadovnick et al., 1991).

What do we know about cognitive changes in MS?

• 50-60% of people experience cognitive changes. Most commonly-affected functions: memory, information

processing, executive functions

• Cognitive function correlates with number of lesions and lesion area on MRI, as well as brain atrophy.

• Cognitive dysfunction can occur at any time—even as a first symptom—but is more common later in the disease.

• Early recognition is important Cognitive dysfunction and fatigue are primary reasons for early

departure from the workforce. Compensatory strategies are the most effective intervention.

What happens when one member in a family is diagnosed with MS?

• MS is like an uninvited guest: Shows up without warning Has its own way of doing things Takes up space in every room Is a stranger to everyone Doesn’t go home

What are the family’s biggest challenges?

• Family members react in their own way/in their own time.

• Each person needs to make peace with the stranger in the house.

• Family needs to learn how to make some space for MS without giving it more than it needs.

• Family resources need to be shared equally (MS is greedy).

Here’s one child’s view of MS

So what do we know about the challenges for people with MS and their families?

• Some people have to wait a very long time for a confirmed diagnosis of MS.

• There is no clear roadmap once the diagnosis is made.• There are no pre-determined stages of adjustment;

emotional reactions ebb/flow with the disease.• Adaptation is a more realistic than acceptance.• MS is like an uninvited guest in the household.• Family members share the impact.

The major challenge for individuals and families: To find a place for the illness

while keeping the illness in its place.

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 Clinicians

• MS Clinical Care Network Website: http://MSClinicalCareNetwork.org

Email: healthprof_info@nmss.org Clinical consultations with MS specialists Literature search services Professional publications Quarterly professional e-newsletter Professional education programs (medical, rehab,

nursing, mental health) Consultation on insurance and long-term care issues