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Asif Kiani
What is MS?
Multiple Sclerosis is a disease of the
Central Nervous System (CNS).
It is also thought of as an
autoimmune disorder.
Fast Facts
Approximately 400,000 people in the US
have MS. (2.5 million worldwide)
Invisible disease.
Not considered fatal.
Not contagious.
More common in northern European
ancestry.
Twice as common in women as men.
Myelin
Myelin is made up of
lipids and proteins.
It acts as a type of
insulation around the
axon of nerves.
Demyelinazation occurs
when the myelin sheath
becomes damaged.
In MS, this is the result
of an abnormal
autoimmune reaction.
Exacerbations
Characterized by a sudden
worsening of symptoms.
Last at least 24 hours
Separated from last exacerbation by at
least one month
Can last from a couple days to a few
weeks.
Followed by demyelinazation.
Pseudoexacerbations
Symptoms are present in the same
form as regular exacerbations
except:
Something triggers the symptoms to
come out.
Fever, infection, hot weather, etc.
When the trigger disappears the
symptoms disappear as well.
Symptoms
Very unpredictable!
Symptoms vary from one individual
to the next, and also from one
exacerbation to the next.
Symptoms can fully disappear after
exacerbations.
Symptoms include…
Fatigue Depression
Muscle Control Sexual dysfunction
problems Numbness/Tingling
Slurred speech Vertigo
Tremors Vision problems
Stiffness Cognitive
Bladder problems problems
Pain Paralysis
Diagnosis
Can be difficult to diagnose because
of the nature of the symptoms.
No specific laboratory tests
available to test for MS.
MRI’s are most often used in
diagnosing and monitoring MS.
Other tests that can be used are spinal
taps and evoked potential tests
Types of MS
There are four main types of MS:
Relapsing/Remitting (RRMS)
Secondary Progressive (SPMS)
Progressive Relapsing/Remitting (PRMS)
Primary Progressive (PPMS)
http://www.nationalmssociety.org/What%20is%20MS.asp
Relapsing/Remitting
(RRMS)
This is generally the first
diagnosis of MS in the 20’s to
30’s.
Approximately 85% of cases.
Women are twice as likely to
have this diagnosis.
Characterized by relapses or
exacerbations followed by
periods of remission.
Secondary Progressive
(SPMS)
About half of
individuals with RRMS
will develop this type of
MS after a number of
years.
This starts out as
RRMS, however over
time there will not be
real recovery after
relapses, just a
worsening progression
of symptoms.
Progressive
Relapsing/Remitting (PRMS)
Characterized by
relapses followed by
periods of remission,
however, during those
periods of remission
there is a general
worsening of symptoms.
Approximately 5% of
cases.
Primary Progressive
(PPMS)
There are no real remissions
with this type of MS. Instead
there is a gradual worsening of
symptoms over time.
Onset is generally around late
30’s to early 40’s.
Men are just as likely as
women to be diagnosed.
Primary onset is in the spinal
cord, but may travel to the
brain.
Individuals with this type of MS
are less likely to suffer from
brain damage.
Approximately 10% of cases.
Treatment
There is currently no cure for MS.
Treatments focus on:
Slowing down the disease (disease
modifying)
Specific symptom treatment
Exacerbation treatment
Disease Modifying
Treatments
These treatments focus their effects on
the autoimmune system.
Interferon Drugs
Avonex
Betaseron
Rebif
Copaxone
Novantrone
Beta Interferons (IFN-β)
These drugs include:
Beta interferon-1a
Avonex
Rebif
Beta interferon-1b
Betaseron (US)
Betaferon (Europe)
Interferons (IFNs)
Interferons are a group of biochemicals
that help regulate the immune system.
These biochemicals are naturally
occurring in the body.
Gamma interferon’s (IFN-γ) are
associated with the disease process in
MS.
Beta interferon’s (IFN-β) are used to treat
MS.
http://www.mult-sclerosis.org/ABCtreatments.html
How do IFN-β drugs work?
It is not completely known how these
drugs work, however, the following is
believed to be the best explanation:
Reduces levels of IFN-γ (gamma interferon)
Blocks WBC from attacking myelin sheaths
Stops T-Cells from releasing cytokines (immune
system signaling molecules)
Interferes with summoning new immune
systems cells to inflammation sites.
http://www.mult-sclerosis.org/ABCtreatments.html
Avonex (1996)
Used to treat RRMS, PRMS, and SPMS and
single clinical episodes with MRI features
consistent with MS
Injection given once a week
Side effects include: flu-like symptoms
Less common side effects include: depression,
mild anemia, increased liver enzymes, allergic
reactions, and heart problems.
Betaseron (1993)
Used to treat RRMS, PRMS, RPMS
Injection given every other day
Side effects include: flu-like symptoms
and injection site reactions
Less common side effects include: allergic
reactions, depression, increased liver
enzymes, and decreased white blood cell
count
Rebif (2002)
Used to treat RRMS, PRMS, and SPMS
Injection given three times a week
Side effects include: flu-like symptoms,
injection site reactions
Less common side effects include: liver
problems, depression, allergic reactions, and
decreased white and red blood cell counts
Copaxone (COP-1) (1996)
Active ingredient is Glatiramer acetate
Used to treat RRMS
Injection given every day
It’s believed that it works by changing the body’s T-cell immune
response to myelin.
Changes T-cells from pro-inflammatory to anti-inflammatory.
Most common side effect is injection site reactions.
Less common side effects include: vasodilation and chest
pain
Some individuals have an injection reaction immediately
following the injection. Characterized by anxiety, chest
pain, palpatations, shortness of breath, and flushing. Lasts
for approximately 15-30 minutes. No treatment is
necessary and no long term effects have been reported.
Novantrone (2000)
Chemotherapeutic drug once used to treat cancer.
It works by suppressing T-cells, B-cells, and macrophages
Used for RRMS, PRMS, and SPMS
Can’t be used for individuals with heart problems, liver
diseases, and blood disorders
Given 4 times a year by IV with a lifetime limit of 8-12
doses
Side effects include: blue/green urine (up to 24 hours),
infections, bone marrow supression (fatigue, bruising,
decreased blood cell counts), nausea, decreased hair
growth, bladder infections, mouth sores
Serious side effects include liver and heart damaged (Patients
are monitored closely for these symptoms)
Symptom Treatment
The treatment of symptoms is
something that is very common for
individuals with MS.
Regular, prescription drugs are used
along with some over the counter drugs.
Some individuals also use herbal
remedies.
Exacerbation Treatment
Main treatment is corticosteroids
Solu-Medrol (Methylprednisolone)
Deltasone (Prednisone)
Decadron (Dexamethasone)
They have the ability to “close the damaged blood-brain barrier
and reduce inflammation in the central nervous system.”
Usually given by IV either in the hospital or as an outpatient.
4 day treatment course followed by decreasing oral corticosteroids
Side effects
Increased appetite, indigestion, nervousness/restlessness, trouble
sleeping, headaches, increased sweating, increased hair growth (body
and face)
http://www.nationalmssociety.org/Meds-
Annual Cost
It costs approximately $35,000 per year
for the treatment of MS.
The individual costs of RR drugs (per year):
Novantrone* - $5,000 - $10,000
Copaxone – $16,000
Avonex & Betaseron - $19,000
Rebif - $23,000
In a lifetime, someone with MS will likely
pay $3.2 million in treatment costs.
Psychosocial Issues
Anxiety, Anxiety, Anxiety
Some medications can cause
depression
Some symptoms can greatly affect a
person and make them feel
inadequate
Personal Awareness
It’s important for individuals with MS
to be aware of what they can and
can not do.
Know your limits
Don’t be afraid to ask for help
Vocational Issues
Not everyone chooses to disclose that they have MS.
Must disclose to get accommodations.
The main problem comes from a lack of knowledge
about the disease by employers.
Not many accommodations are really needed.
Most accommodations are simple – arrangement of furniture
(desk, bookcases, filing cabinets, etc.)
Vocational Resources
Many individuals don’t seek out
resources.
Don’t need them.
Don’t know they exist.
Job Accommodation Network
Occupational Therapy
VESID
National Multiple Sclerosis
Society (Upstate NY Chapter)
Serves 42 counties
Rochester to
Binghamton to Albany
North Country
Fundraising
Self-help and
support groups
Offer a variety of
different services
Services offered
Educational Programs
For individuals with MS
For area doctors
In-services for schools
Recreational Programs
Online programs
Referral information
Publications
Adam’s Story
References and Resources
Books
Donna Falvo – Medical and Psychosocial
Aspects of Chronic Illness and Disability
Online Resources
National Multiple Sclerosis Society
WebMD
Multiple Sclerosis International Foundation
National Institute of Neurological Disorders and
Stoke