An Overview for Rehabilitation Specialists 1 What does MS look like Julia a 35yo white married mother of 3 who is exhausted all the time and cant drive because of vision problems and numbness in her feet ID: 502234
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Slide1
Multiple Sclerosis
An Overview for Rehabilitation Specialists
1Slide2
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).
2016—Today
, there are
several
medications approved in the U.S. for the treatment of MS and more in the pipeline.
Today there are
2.3
million
people 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 Attack
Loss of myelin
& nerve fiberSlide10
What happens in MS?
...cross the blood-brain barrier…
…launch attack on myelin & nerve fibers...
“Activated”
immune
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
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
)Slide16
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
Slide17
Disease Types
Clinically isolated syndrome (CIS)
Relapsing-remitting MS (RRMS)
About 85% of people are diagnosed with RRMS
Primary progressive MS (PPMS)
About 15% of people experience this course
Secondary progressive
Most people diagnosed with RRMS will eventually transition to SPMS
Lublin et al, 2014Slide18
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 MSSlide19
Lublin et al, 2014Slide20
Lublin et al, 2014Slide21
Lublin et al, 2014Slide22
Lublin et al, 2014Slide23
An Overview of Treatment StrategiesSlide24
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 physicianSlide25
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 Slide26
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 supportSlide27
How is the disease course treated?
Thirteen disease-modifying therapies are FDA-approved for relapsing forms of MS:
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
(
Gileny
®) [oral]
teriflunomide
(Aubagio®) [oral]
alemtuzumab (Lemtrada®) [
inf
]mitoxantrone [inf
]natalizumab (Tysabri®) [inf]Slide28
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 symptomsSlide29
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
TxSlide30
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-labelSlide31
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 Slide32
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-determinedSlide33
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
;
armodafinil
;
psychostimulantsSlide34
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
Emptying dysfunction
Bladder fails to empty
risk of UTI
Sx
include
: urgency, frequency,
nocturia
, incontinence
Tx
includes: ISC and anticholinergic/
antimuscarinic medicationsSlide38
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 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 + exerciseSlide44
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
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 groupSlide50
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
Society Resources for People with MS
Nationwide network of 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 assistanceSlide53
Society Resources for Healthcare Professionals
Professional Resource Center Website:
www.nationalMSsociety.org/PRC
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
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