Multiple Sclerosis: An Overview for

Case Management Professionals

Susan RaimondoConnecticut Chapter

Offices in Hartford and Norwalk860.913.2550 1.800.344.4867

www.ctfightsMS.orgSusan.raimondo@nmss.org

Charlene BreenCare Management Associates/Connecticut Community Care, Inc.Toll-free: 800.654.2183www.ctcommunitycare.org

What does MS look like?

• Julia—a 35yo white married mother who is exhausted all the time and can’t drive because of vision problems

• 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

• 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

• Richard—who was found on autopsy at age 76 to have MSbut never knew it

What is MS?

• Neurological disease• Misguided immune cells• Multiple scars• Unpredictable• Variable• Often progressive

What is MS? cont’d.

• 2-3x women as men

• Usually diagnosed between 20 and 50

• 200 people diagnosed every week in US

• More common in Caucasians, especially those of northern European ancestry

What Causes MS?

GeneticPredisposition

EnvironmentalTrigger

Autoimmunity

Loss of myelin & nerve fiber

• 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).

The risk of getting MS is approximately:

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 fiber

MS: A Timeline

• 1396- Earliest recorded case of MS.• 1868- 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).• 1981- 1st MRI image of MS is published. • 1993- The first disease-modifying agent for MS—Betaseron—is approved in

the U.S.• 1998- Bruce Trapp confirms that the nerve fibers are irreversibly damaged

early in the disease course (probably accounting for the permanent disability that can occur).

• 2014- There are several medications approved for the treatment of MS and more in the pipeline.

How is MS diagnosed?

• MS is a clinical diagnosis: Signs and symptoms Medical history Laboratory tests Magnetic resonance imaging

(MRI) Visual evoked potentials (VEP) Lumbar puncture

What tests may be used to help confirm the diagnosis?

Magnetic resonance imaging (MRI)

Visual evoked potentials (VEP)

Lumbar puncture

How is MS diagnosed?

• 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 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

• Characteristics that predict a better outcome: Female, onset before age 35, sensory symptoms Complete recovery following a relapse

An Overview of Treatment Strategies

The MS treatment team includes the person with MS and a …NeurologistUrologistNursePhysical therapistOccupational therapistPhysiatrist

PsychiatristPsychotherapistNeuropsychologistSocial worker/Care managerPharmacistPrimary care physician

What are the treatment strategies?

• 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

FDA-Approved Disease-Modifying Agents

• Aubagio (teriflunomide) *

• Avonex (interferon beta-1a) **

• Betaseron (interferon beta-1b) **

• Copaxone (glatiramer acetate) **

• Extavia (interferon beta-1b) **

• Gilenya (fingolimod)*

• Novantrone (mitoxantrone)***

• Rebif (interferon beta-1a)**

• Tecfidera (dimethyl fumarate)*

• Tysabri (natalizumab)***

* oral ** by injection*** by infusion

What do the disease-modifying drugs do?

• All reduce attack frequency and severity, reduce scarring on MRI, and probably slow disease progression.

• These medications are not designed to: 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 diagnosis of relapsing MS has been confirmed. Irreversible damage to axons occurs even in the earliest

stages of the illness. Treatment is most effective during early, inflammatory

phase Treatment is least effective during later, neurodegenerative

phase• No treatment has been approved for primary-progressive

MS.• As of 2010, approximately 60% of people with MS are

being treated with a disease-modifying therapy.

MS Symptoms vs Relapses…How Are They Different?

• MS symptoms are chronic or ongoing indicators of MS lesion damage to certain areas of the brain and/or spinal cord

• MS relapses are sudden flare-ups or symptom attacks that typically last several days to several weeks

Joy and Johnston, eds. Multiple Sclerosis: Current Status and Strategies for the Future. Washington, DC: National Academies Press; 2001

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 H.P. Acthar® gel Plasmapheresis

• Rehabilitation to restore lost function• Psychosocial support

What are possible symptoms?

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

Sexual dysfunction Emotional disturbances (depression, mood swings) Cognitive difficulties (memory, attention,

processing)

(Heat can worsen many symptoms)

What are possible symptoms? cont’d.

Sensory changes (tingling, numbness) Pain (neurogenic, musculoskeletal) Spasticity Gait, balance and coordination problems Weakness, paralysis Speech/swallowing problems Tremor

These are symptoms of a number of illnesses, making diagnosis difficult.

(Heat can worsen many symptoms)

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, hot baths/showers) 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

If a person with MS has a fever, symptoms canworsen rapidly. Important to find the source of the infection.

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

Many symptoms are invisible and misunderstood.

Cycle of MS Symptoms:Related and Interdependent

Sleep

FatigueDepression

Bladder& Bowel

problems

Sexuality issues

SpasticityConstipation

Cognitive function

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/disinterest

Managing MS Fatigue, cont’d.

Strategies:• 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, armodafinil

Managing Bladder Dysfunction

• 80% of people with MS experience bladder problems.• Major cause of embarrassment and social isolation.

Types• 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

Managing Bladder Dysfunction, cont’d.

Types, cont.• 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

Improving Mobility

• 80-90% of people experience mobility impairment due to weakness, imbalance, sensory problems, or spasticity

• Management strategies: Dalfampridine (Ampyra) to improve walking (speed;

weakness) Spasticity management Exercise/gait training Mobility aids for weakness, balance, and fatigue issues

Improving Mobility, cont’d.

Ataxia/Tremor• Less common MS symptom, but very 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)

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 Sexual Dysfunction

• 40-80% of people with MS Reduced libido (behavioral/environmental strategies) Sensory disturbances (anticonvulsant medications)

• Women Reduced lubrication (gels)

• Men Erectile dysfunction (pharmacotherapy; implants)

• Other contributory factors Managing symptoms that interfere with sexual activity/pleasure (fatigue,

spasticity, bladder dysfunction) Managing medications to promote comfort and responsiveness

(anticholinergic; antidepressants; fatigue & spasticity meds) Feelings and attitudes – education and counseling

Managing Pain

• 75% of people with MS experience pain• Neuropathic (central) pain

Paroxysmal pain (trigeminal neuralgia; headache)• Anticonvulsants

Continuous pain (dysesthesias)• Tricyclics; anticonvulsants

• Secondary pain Musculoskeletal pain

Physical therapy; NSAIDs Spasticity—As described previously

Speech Issues

• 40-50% experience speech/voice disorders Dysarthria – impaired volume control, articulation,

emphasis Dysphonia – altered voice, pitch control, breathiness,

hoarseness• Speech/language assessment:

Oral peripheral examination, voice eval, communication profile

• Treatment: includes exercises, strategies and compensatory techniques to improve speech

clarity, augmentative device or ACC, if needed

Swallowing Issues

• Dysphagia – less common symptom Swallowing assessment, clinical history,

examination, videofluoroscopy (modified barium swallow)

• Treatment Exercises Dietary modifications/positioning while

eating/chewing strategies Non-oral feeding options, if needed

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

Cognitive Symptoms

• Correlates with number of lesions, 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

Cognitive Symptoms, cont’d.

• Most common problems: memory, attention/concentration, information processing

• Treatments:• Disease-modifying therapy, donepezil• Cognitive rehabilitation (primarily compensatory)

Cognitive symptoms are often misunderstood.

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• Recommended treatment:

psychotherapy + medication + exercise

Other Affective Disorders

Bipolar disorder• 10 times the rate of general population

Mood swings • Rapid changes in feelings - anger, irritability, sadness -

are very common Anxiety disorder

• As common as depression, particularly in the early phases of the disease

Pseudobulbar affect• Pathological laughing and weeping

Euphoria• In progressive MS, person may be excessively happy

given their situation.

Serious Complications

• Urosepsis• Aspiration pneumonia• Pulmonary dysfunction• Skin breakdown• Untreated depression• Osteoporosis

What are the psychosocial challenges?

Uncertain diagnosis Unpredictable course and outcomes Invisible symptoms Potential physical and/or cognitive disability Diminished self-esteem Impact on relationships and family systems Uncertain financial future

What are essential psychosocial interventions?

Disease-related education to enhance people’s understanding of the disease, adaptive coping strategies, and available resources

Support for the ongoing grieving process as activities and roles are altered by the disease

What are essential psychosocial interventions? cont’d.

Help with important life transitions—diagnosis, disease progression, disability

Assessment and treatment of emotional and/or cognitive problems

Support for family members

What role does rehabilitation play?

• Rehabilitation offers 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

What role does rehabilitation play? cont’d.

• Rehabilitation offers structured, problem-focused,

interdisciplinary interventions to:

Identify appropriate assistive devices and

environmental modifications

Prevent injuries and unnecessary complications

Empower individual and family

Rehabilitation and MS: Medicare coverage for maintenance programs

• Jimmo Settlement - Maintenance Therapy

• Skilled therapy services are covered when an

assessment of the patient’s condition demonstrates

that skilled care is necessary for the performance of a

safe and effective maintenance program to maintain

the patient’s current condition or prevent or slow further

deterioration.

• 60% of people with MS have activity

limitation

• 20-25% need long-term care services

• 14,000 in nursing homes

• 60% of nursing home residents with MS are

under 60 years of age

Long-term Services and Supports

MS-Related Stresses for Patients & Families

• MS is a chronic disease that many will live with for decades.

• The unpredictability from day to day and year to year is difficult for patients and families to handle.

• MS is a disease characterized by change and loss.• Treatment costs and loss of income threaten patient and

family well-being.• With more options available and choices to make,

patients and families worry about making “wrong” choices.

What can people do to feel their best?

• Balance activity with rest.• Talk with their rehabilitation professional about

exercise • Eat a balanced, low-fat, high-fiber diet. Drink

plenty of fluids to maintain bladder health and avoid constipation.

• Avoid heat if they are heat-sensitive.• Follow standard preventive health measures for their age group

What can people do to feel their best? cont’d.

• Reach out to their support system, stay connected, 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

What You Can Do

• Be knowledgeable about MS and its symptoms• Be sensitive to the losses and sadness that people

with MS experience• Understand the variability of the disease• Understand that people with MS want to be as

independent as they possibly can• Contact the National MS Society (1-800-344-4867)

for information, resources and support (www.nationalmssociety.org)

Society Resources for People with MS

• Chapters around the country• www.nationalMSsociety.org• Access to reliable information and referrals (800-344-4867)• Educational programs (in-person, online)• Support programs (self-help groups, peer and professional

counseling)• Consultation (legal, employment, insurance, long-term care)• Financial assistance

Society Resources for Health Professionals

• MS Clinical Care Network• www.nationalmssociety.org/ms-clinical-care-network/index.aspx

Email: healthprof_info@nmss.org• MS Clinical Care Connection – the Society’s quarterly enews for

clinicians – provides information and resources on a range of topics related to comprehensive MS care.

• Comprehensive MS library/literature search services• Clinical consultations with MS specialists• Professional publications • Professional education programs (medical, rehab, nursing, mental health)• Consultation on insurance and long-term care issues

National MS Society, Connecticut Chapter

www.ctfightsMS.org659 Tower Avenue, First Floor

Hartford, CT 06112-1269programs@ctfightsMS.org

860.913.2550800.344.4867