multiple sclerosis: what you need to kno · multiple sclerosis: what you need to know for people...
TRANSCRIPT
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Multiple Sclerosis:
What You Need to Know
For People Who are Newly Diagnosed
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Today is a Starting Point
• For learning basic information about MS:
What it is and what it is not
How it is diagnosed
How it is treated
• For learning some basic guidelines for living with MS
Dealing with common feelings and concerns
Accessing available resources
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19th Century Highlights
MS-related central nervous system
pathology—Jean Cruveilhier, c 1841
Jean-Martin Charcot (1825–1893)
described features of MS
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What MS Is:
• MS is thought to be a disease of the immune system—probably autoimmune.
• Its name comes from the scarring caused by inflammatory attacks at multiple sites in the central nervous system.
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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
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What Causes MS?
Genetic
Predisposition
Environmental
Trigger
Autoimmunity
Loss of myelin
& nerve fiber
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What happens in MS?
...cross the blood-brain barrier…
…activate other immune cells and launch
attack on myelin & nerve fibers...
“Activated” T cells...
…to obstruct nerve signals.
myelinated nerve fiber myelinated nerve fiber
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Myelin
Nerve Fiber
Cross-section of a Nerve Fiber
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What happens to the myelin and
nerve fibers?
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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)
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Why did I get MS?
• We do not know why one person gets MS and
another does not
• We do not know of anything:
You did to cause MS
You could have done to prevent it
• We do not know any way to predict who will
get it and who will not
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What is the genetic factor?
• The risk of getting MS is approximately:
1/750 for the general population
1/40 for person with a close relative with MS
1/4 for an identical twin
• 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)
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How is MS diagnosed?
• MS is a clinical diagnosis:
Medical history
Symptoms and signs
Laboratory tests (for confirmation only)
• Requires evidence of 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.
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What tests may be used to confirm the
diagnosis?
• Magnetic resonance imaging (MRI)
• Evoked potentials – most commonly visual
evoked potentials (VEPs)
• Lumbar puncture (spinal tap)
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What are possible symptoms?
• Vision problems
• Stiffness (spasticity)
• Pain (neurogenic)
• Sexual problems
• Speech/swallowing problems
• Tremor
• Breathing difficulties
• Impaired temperature control
• Fatigue (most common)
• Bladder/bowel
dysfunction
• Sensory problems
(numbness, tingling)
• Emotional changes
(depression, mood
swings)
• Walking difficulties
• Thinking/memory
problems
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What is the prognosis?
• One hallmark of MS is its unpredictability.
Approximately one-third 1/3 will have a very mild course
Approximately one-third will have a moderate course
Approximately one-third will become more disabled
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What are the patterns (courses) of MS?
• Relapsing-Remitting MS (RRMS)
• Secondary-Progressive MS (SPMS)
• Primary-Progressive MS (PPMS)
• Relapsing-Progressive MS (RPMS)
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Relapsing-Remitting MS
The majority of people (about 85%) initially
experience attacks (relapses) followed by periods
of full/partial recovery (remissions), with no
progression of disability between attacks.
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Relapsing-Remitting MS In
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time
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Secondary-Progressive MS
Of those who are diagnosed with a relapsing-
remitting disease course, many will transition
to a secondary-progressive course in which
the disease begins to progress between
attacks.
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Secondary-Progressive MS In
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time
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Primary-Progressive MS
A small percentage of people experience
progression from onset, with no attacks along
the way.
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Primary-Progressive MS In
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time
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Progressive-Relapsing MS
In the rarest pattern of MS, people experience
progression from onset, with some relapses
along the way.
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Progressive-Relapsing MS In
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Is there a cure for MS?
• Unfortunately no—not at the present time
• Without knowing the underlying cause of MS, it is
very difficult identify the cure
• The Society and other agencies are funding research
to stop disease progression, repair damage to the
nervous system, and—ultimately—to prevent the
disease from happening in the first place
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So what do we do in the meantime?
• While we continue to look for the cure,
the focus of MS care is:
Treating relapses (aka exacerbations, flare-ups, attacks)
Slowing disease progression
Managing symptoms
Maintaining/improving function
Enhancing quality of life
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How are exacerbations treated?
• Exacerbations (flare-ups of new symptoms or worsening of old ones, lasting at least 24 hrs.) may be treated with corticosteroids to reduce inflammation.
Short course of intravenous, high-dose methylprednisolone, sometimes followed by an oral taper
Not all exacerbations require treatment
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Is it possible to alter the course of MS?
• Ten disease-modifying therapies are FDA-approved to treat MS:
Aubagio® (teriflunomide) - oral
Avonex® (interferon beta-1a) – injection
Betaseron ® (interferon beta-1b) – injection
Copaxone ® (glatiramer acetate ) - injection
Extavia® (interferon beta-1b) – injection
Gilenya® (fingolimod )– oral medication
Novantrone ® (mitoxantrone) - infusion
Rebif® (Interferon beta-1a) – injection
Tecfidera™ (dimethyl fumarate — formerly called BG-12) - oral
Tysabri ® (natalizumab) - infusion
All reduce attack frequency and scarring on MRI, and may slow disease progression
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Will a disease-modifying drug make me
feel better?
• These medications reduce the number of attacks and
probably slow progression
• These medications do not:
Cure the disease
Make people feel better
Alleviate symptoms
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How are MS symptoms treated?
• Symptoms caused by inflammation are likely to
disappear as the inflammatory attack subsides.
• Symptoms caused by scarring and damage to the
nerve cells are likely to remain.
• There are a variety of medications and management
strategies to manage the symptoms that occur.
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Which symptoms are treatable with
medication or other strategies?
• Fatigue (most common)
• Vision problems
• Stiffness (spasticity)
• Bladder/bowel dysfunction
• Sexual problems
• Pain
• Emotional changes (depression, mood swings)
• Walking difficulties (weakness, imbalance)
• Cognitive changes (attention, memory, processing)
• Speech difficulties
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What can I do to feel my best?
• Balance activity with rest
• Talk with your doctor about the right type/amount of
exercise.
• Eat a balanced low-fat, high-fiber diet.
• Avoid heat if you are heat-sensitive.
• Drink plenty of fluids to maintain bladder health and
avoid constipation.
• Follow the standard preventive health measures
recommended for your age group.
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What else can I do?
• Reach out to your 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:
Talking about your diagnosis with others
Making employment decisions
Planning wisely for the future
• Be aware of common emotional reactions.
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What else can I do?
• Pay attention to signs of depression
Depression differs from normal grieving
Depression is more common in MS than in other chronic illnesses (thought to be a symptom of MS as well as a reaction to it)
More than 50% of people with MS will experience a significant depression at some point along the way
Depression can occur at any time—even as a first symptom of MS
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What can I do about depression?
• Recognize the symptoms (lasting longer than two
weeks)
Loss of interest in pleasurable things
Significant changes in appetite, sleep patterns
Intense feelings of sadness or irritability
• Talk to you doctor
Depression is treatable
Depression responds best to a combination
of medication and counseling
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Who is on the MS health care team?
• Person with MS
• Physician (neurologist and/or physiatrist)
• Nurse
• Physical therapist
• Occupational therapist
• Speech/language pathologist
• Psychologist or neuropsychologist
• Social worker
• Pharmacist
• Urologist
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MS: What you need to know
• Questions?
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Join the movement!
The National MS Society's vision is:
A World Free of MS.
The Society's mission is:
We mobilize people and resources to drive research for a
cure and to address the challenges of everyone affected
by MS.
Thank you for your attendance!