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Multiple Sclerosis
What You Need to Know
about the Disease
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
• Jeannette—whose tremors are so severe that she cannot feed
herself
1396: Earliest Recorded Case of MS
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 – perhaps
autoimmune.
• The primary targets of the immune-mediated attack are the
myelin coating around the nerves in the central nervous system
(CNS—brain, spinal cord, and optic nerves), the nerve fibers
themselves, and the cells that make myelin.
• 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 (the average lifespan of PwMS is approximately 7-8
years shorter than the general population)
• Being diagnosed with MS is not a reason to:
– Stop working
– Stop doing things that one enjoys
– Not have children
What happens in MS?
“Activated” T cells...
...cross the blood-brain barrier…
…launch attack on myelin & nerve fibers...
…to obstruct nerve signals.
myelinated nerve fiber
myelinated nerve fiber
What happens
the myelin and nerve fibers?
to
What Causes MS?
Genetic
predisposition
Environmental
trigger
Immune attack
Loss of myelin
& nerve fiber
Who gets MS?
• Usually diagnosed between 20 and 50
– Occasionally diagnosed in young children and older adults
• More common in women than men (>3:1)
• Most common in those of Northern European ancestry
– Occurs in all ethnic groups but is more common in Caucasians
than Hispanics; rare among Asians
– Recent research suggests that the risk in African-American
women may equal that of Caucasians
• More common in temperate areas (further from the equator)
Answering the Big Question:
“Why did I get MS?”
• We do not know why one person gets MS and another does not.
• We do not know of anything:
– The person did to cause MS
– The person could have done to prevent it
• There is no way to predict who will get it and who will not.
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 are other known risk factors?
• Smoking – active or passive – is known to increase of risk of
MS and of disease progression
• Obesity in adolescence
• Exposure to the Epstein-Barr virus?
• Low vitamin D levels
14
How is MS diagnosed?
• MS is a clinical diagnosis:
– Medical history
– Symptoms and signs
– Laboratory tests (for confirmation only)
• Requires dissemination in time and space:
– Space: Evidence of scarring (plaques) in at least two
separate areas of the central nervous system
– 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 (spinal tap)
Conventional MRI in MS Clinical
Practice
T2
FLAIR
BOD*
T1 precontrast
T1 Gd
postcontrast
Disease Activity†
Black Holes†
The strongest
correlation with
progression of
disability
*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.
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What are possible symptoms?
• Fatigue (most common)
• Vision problems
• Bladder/bowel
dysfunction
• Sensory problems
(numbness, tingling)
• Emotional changes
(depression*, anxiety,
mood swings)
• Walking difficulties
•
•
•
•
•
•
•
•
Stiffness (spasticity)
Pain (neurogenic)
Sexual problems
Speech/swallowing problems
Tremor
Breathing difficulties
Impaired temperature control
Cognitive changes
(processing speed, memory,
attention, executive
functions)
*Depression is one of the most common symptoms of MS
What are the
different courses of MS?
•
•
•
•
Clinically isolated syndrome (CIS)
Relapsing-remitting MS (RRMS)
Secondary progressive MS (SPMS)
Primary progressive MS (PPMS)
Lublin et al., 2013
What is a clinically-isolated syndrome (CIS)?
• First neurologic episode caused by demyelination in the CNS
• May be monofocal or multifocal
• May or may not go on to become MS
– CIS accompanied by MS-like lesions on MRI is more likely to
become MS than CIS without lesions on MRI
• All of the approved injectable medications to treat MS have been
approved for use in a person with CIS.
Disease Courses: What Happens in MS Over Time
Secondary Progressive
Symptoms
Symptoms
Relapsing-Remitting
Time
Symptoms
Symptoms
Time
Time
Time
Primary Progressive
Symptoms
 Relapsing course can be:
 Active or Inactive
 Worsening or Not Worsening
Time
 Progressive courses can be:
Symptoms
 Active with or w/o progression
 Not active with or w/o
progression
Time
Lublin, et al. Neurology 2013
.
What is relapsing-remitting MS?
•
•
Episodes of acute worsening of neurologic functioning with total or
partial recovery and no apparent progression disease
RRMS can be characterized as:
– Active – showing evidence of new relapses, new gadolinium-enhancing
lesions and/or new or enlarging T2 lesions on MRI over a specified time period
OR
– Not active – showing no evidence of disease activity
AND
– Worsening -- defined as increased disability confirmed over a specified time
period following a relapse OR
– Stable – defined no evidence of increasing disability over a specified time
period following a relapse
22
What is primary progressive MS?
•
•
Steadily worsening neurologic function from the beginning without
any distinct relapses or remissions
May be characterized as:
– Active – showing evidence of new relapses, new gadolinium-enhancing
lesions and/or new or enlarging T2 lesions on MRI over a specified time period
OR
– Not active – showing no evidence of disease activity
AND
– With progression – objective evidence of disease worsening, confirmed over a
specified period of time, with or without relapses OR
– Without progression – no objective evidence of disease worsening over a
specified time period following a relapse
What is secondary progressive MS?
• Following an initial relapsing-remitting course, the disease
becomes more steadily progressive, with or without relapses
• May be characterized as:
– Active – showing evidence of new relapses, new gadolinium-enhancing
lesions and/or new or enlarging T2 lesions on MRI over a specified time
period OR
– Not active – showing no evidence of disease activity
AND
– With progression – objective evidence of disease worsening, confirmed
over a specified period of time, with or without relapses OR
– Without progression – no objective evidence of disease worsening over a
specified time period following a relapse
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
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?
• While we continue to look for the cure, MS management includes:
– Treating relapses (aka exacerbations, flare-ups, attacks—that last
at least 24 hours)
– Managing the disease course
– Managing symptoms
– Maintaining/improving function
– Enhancing quality of life
– Optimizing wellness
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?
• More than 12 disease-modifying therapies are FDA-approved for
relapsing forms of MS, including injectable, oral and infused options.
• One medication is approved to treat primary progressive MS.
• Most of the medications have different mechanisms of action so that
a person whose disease is not adequately controlled by one
medication has other options to try.
• These medications have different side effects and risks that must be
weighed against the benefits they offer.
• None of the medications is approved for use during pregnancy or
breastfeeding.
• All of these medications are expensive
Disease-modifying therapies
•
•
More than a dozen disease-modifying therapies are FDA-approved for
relapsing forms of MS:
– daclizumab (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 MS
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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 people with MS are on treatment
Treatment Adherence Issues
• Patient readiness is key
• Factors affecting adherence include:
– Lack of knowledge about MS
– Unrealistic expectations
– Denial of illness
– Side effects
– Cultural factors
– Lack of support (medical team, family)
– Distrust of medical community
Which symptoms are treatable with
medication and/or other strategies?
•
•
•
•
Fatigue
Vision problems
Stiffness (spasticity)
Bladder/bowel
dysfunction
• Pain
•
•
•
•
•
•
Depression*
Emotional changes
Walking difficulties
Cognitive changes
Sexual problems
Speech/swallowing
problems
Effective symptom management involves medication, rehabilitation
strategies, emotional support—and good coordination of care.
* One of the most common symptoms of MS
What can people do to feel their best?
•
•
•
•
•
•
•
Manage co-morbid conditions
Not smoke (actively or passively)
Balance activity with rest.
Talk with their doctor about the right type/amount of exercise.
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
• Be aware of common emotional reactions.
How can people work effectively with
their healthcare team?
• A working partnership requires open communication, mutual respect,
and trust.
– Provide HCP with a complete list of all medications (prescription
and non-prescription)
– Report recent changes (new or worsening symptoms)
– Come to appointments with a list of questions.
– Bring an “extra pair of ears”
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 generally 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.
Something to Think About
You’ve just heard a lot about MS and the ways it can
impact a person.
It may be helpful to think about your personal reactions,
attitudes—even prejudices—about illness and disability.
As in other areas, self-awareness can enhance
your effectiveness as a therapist.
Society Resources for People with MS
• Nationwide network of field offices around the country
• Web site (www.nationalMSsociety.org)
• MS Navigator Program for information, referrals, support
(1-800-344-4867)
• Educational programs (in-person, online)
• Support programs (self-help groups, peer and
professional counseling, friendly visitors)
• Free consultation (legal, employment, insurance, longterm care)
• Financial assistance
Society Resources for
Healthcare Professionals
• Professional Resource Center
Website: www.nationalMSsociety.org/PRC
Email: [email protected]
– Discipline-specific publications and resources
– Free MS Diagnosis & Management app for iPhones and
Android phones
– Literature search services
– Quarterly e-newsletter for professionals
– Professional education programs
– Wellness webinars
– Consultation on insurance and long-term care issues