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Multiple Sclerosis

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
Muscle Control
problems
Slurred speech
Tremors
Stiffness
Bladder problems
Pain

Depression
Sexual dysfunction
Numbness/Tingling
Vertigo
Vision problems
Cognitive
problems
Paralysis

Diagnosis

Can be difficult to diagnose because


of the nature of the symptoms.
No specific laboratory tests available
to test for MS.
MRIs 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
20s to 30s.
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
30s to early 40s.
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-)

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 interferons (IFN-) are associated
with the disease process in MS.
Beta interferons (IFN-) are used to treat
MS.

http://www.mult-sclerosis.org/ABCtreatments.html

How do IFN- 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- (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
Its believed that it works by changing the bodys 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
Cant 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

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.

Solu-Medrol (Methylprednisolone)
Deltasone (Prednisone)
Decadron (Dexamethasone)

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-Methylprednisolone.asp

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

Its important for individuals with MS


to be aware of what they can and
can not do.

Know your limits


Dont 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 dont seek out


resources.

Dont need them.


Dont 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

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