Multiple Sclerosis - Amazon Web Services

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Multiple Sclerosis
RESOURCE GUIDE
Presented by
A collection of resources that provide
information and support to patients with multiple
sclerosis and the professionals who treat them.
From the Publisher
From the Publisher
PRESIDENT
Healthcare Specialty Group
Mike Hennessy, Jr
This resource guide was created to help people with multiple sclerosis
(MS), their caregivers, and loved ones learn more about the disease and
the resources available on the Internet for information and support.
Inside, you will find an in-depth explanation of MS, including how it is
diagnosed and treated. The guide’s Health, Diet, and Emotional Support
section provides patients with suggestions on how to cope physically and
emotionally, and maintain a healthy lifestyle.
For additional support, this guide highlights organizations that focus
specifically on MS. Refer to the websites of the suggested organizations
for in-depth, yet, easy-to-understand information about MS; news and
information about available treatment options; access to downloadable
materials, blogs, discussion forums, videos, and other personal accounts
from patients and caregivers who have experienced life with MS and want
to share advice and support; and where to receive financial support. The
information and resources provided by the websites you read about in this
guide are not intended to substitute medical care or treatment. Nothing
takes the place of speaking with a doctor or other medical care professional about MS, or any other medical condition. These websites are
provided for educational purposes and to help facilitate communication
between patients, their caregivers, and their providers.
We hope you find this guide useful and wish you the best on your
journey.
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2
Multiple Sclerosis Resource Guide | 12.15
www.MDMagazine.com | www.TheEducatedPatient.com
Table of Contents
2
From the Publisher
4
About Multiple Sclerosis (MS)
7
Health, Diet, and Emotional Support
11 Frequently Asked Questions
12 Questions to Ask Your Physician
15 Glossary of Important Terms
Patient Education Resources
16 Multiple Sclerosis Foundation
16 MedlinePlus—Multiple Sclerosis
17
National Institute of Neurological Disorders and Stroke—Multiple
Sclerosis
17
National Multiple Sclerosis Society
18 The Educated Patient®
Support Group Resources
18 MS Neighborhood
19MSWorld
19 Multiple Sclerosis Association of America
20 Center for Medicare Advocacy, Inc.
20 HealthWell Foundation
21National Multiple Sclerosis Society: Insurance & Financial
Information
22 Resource Reference Chart
www.MDMagazine.com
3
Information
About Multiple Sclerosis (MS)
What is MS?
To understand what multiple sclerosis (MS) is, and how it
develops, it is important to understand how the immune system
interacts with the brain and central nervous system. Normally,
immune system cells travel in and out of the brain and search
for infectious agents such as viruses and unhealthy cells. This is
known as surveillance. If any bad cells or infections are detected,
the immune system can kill the bacteria or bad cells directly, and
can produce substances that help a person heal.1
However, in people with MS, immune cells become activated
when they shouldn’t and they attack and destroy the protective
sheath (myelin) that covers nerves and helps to speed nerve
impulses traveling within the nervous system. When myelin is
damaged, the communication between a person’s brain and the
rest of their body is disrupted. In MS, nerves are destroyed and as
the disease progresses, the brain cortex shrinks.1
An exacerbation (or attack) is a sudden worsening of MS
symptoms, or the appearance of new symptoms, that lasts for at
least 24 hours. MS relapses are thought to be associated with the
development of new areas of damage in the brain. The period
during which patients are free from experiencing symptoms is
called remission.1
Types of MS
MS affects each patient differently, and it is difficult to predict
the course of MS.1 However, understanding the different types of
MS can help you understand your diagnosis and work with your
healthcare professional to manage and treat your condition.
◆
Symptoms of MS
MS affects each patient differently, and diagnosing MS can be
difficult because symptoms of MS often mimic those of other
conditions and diseases.1
However, some common symptoms associated with MS
include: 1,2
4
◆
Fatigue
◆
Vision problems
◆
Numbness and/or tingling
◆
Bladder problems
◆
Weakness
◆
Bowel problems
◆
Dizziness and/or vertigo
◆
Tremor
◆
Pain
◆
Speech problems
◆
Walking difficulties (gait)
◆
Cognitive changes
◆
Spasticity
◆
Depression
◆
◆
◆
elapsing-remitting MS (RRMS) is the most common type
R
of MS. RRMS normally begins with a new attack (exacerbation)
that is then followed by a partial or complete recovery. Patients
may not experience another attack for weeks, months, or even
years.1-3
rimary-progressive MS (PPMS) is not characterized by
P
attacks and remissions; rather, patients with PPMS experience
a steady worsening of symptoms, though patients with PPMS
may occasionally experience temporary or minor relief from
symptoms.1-3
econdary-progressive MS (SPMS) is diagnosed after a
S
patient has had RRMS for a period of time, but then experiences a
change in disease course with a steady progression of worsening
symptoms. Patients with SPMS don’t experience any periods of
remission.1-3
Progressive-relapsing MS is a rare form of MS
characterized by steady worsening of symptoms along with
occasional exacerbations. The rate of disease progression will
vary for each patient.3
Diagnosing MS
Treating MS
MS may be challenging to diagnose as its symptoms resemble
those of other neurological conditions and diseases.1 For this
reason, healthcare professionals must rule out conditions that
may have similar signs and symptoms.2 To help diagnose MS, a
thorough review of your medical history and a neurological exam
is necessary.1,2 Your healthcare professional may also suggest one
or more of the following tests:
There is no cure for MS. Rather, healthcare professionals treat
patients with MS by focusing on reducing the length of a MS
attack, slowing overall disease progression, and managing
symptoms of MS.1,2 Before beginning therapy, it is important
to understand and discuss what treatment options may be most
appropriate for you with your healthcare professional. Also, it
is important to follow up regularly with your healthcare team
and discuss any side effects that you encounter during and after
treatment.1
◆
◆
◆
◆
lood tests can be used to help rule out other conditions that
B
present with similar symptoms.2
lumbar puncture (spinal tap) can be performed to
A
collect a person’s cerebrospinal fluid. The fluid is examined in a
laboratory to check for proteins and inflammatory cells that are
associated with MS.1,2
agnetic resonance imaging (MRI) scans can be
M
used to detect lesions on a person’s brain or spinal cord that
are characteristic of MS. During a MRI, you may receive an
intravenous injection of a special dye which can be used to
identify areas of active disease.1,2
voked potential tests use visual and electrical stimuli
E
to measure how quickly information travels down a person’s
nerve pathways and assess how accurately the nervous system
responds to stimulation.1,2
www.MDMagazine.com
Treatment options for MS attacks
When focusing on an initial attack, healthcare professionals will
most often prescribe an oral or intravenous steroid such as methylprednisolone or prednisone to reduce inflammation.1,2
Patients who do not respond well to methylprednisolone may
be recommended a treatment option called plasma exchange
(plasmapheresis). During a plasma exchange, a patient’s blood
is removed from his or her body. The liquid portion (plasma)
is separated from blood cells, and the blood cells are combined
with replacement plasma. Then, the blood is returned to the
patient’s body. This option may also be suggested to patients
experiencing symptoms for the first time, or those experiencing
increased severity of a symptom.1,2
5
Treatment options for reducing disease activity
and progression
It is important to begin treating MS as early as possible, as
several treatment options called disease-modifying therapies can
help reduce number of relapses and slow overall disease progression. The types of disease-modifying therapies effective for the
treatment of RRMS include:
◆
Treating symptoms of MS
As previously mentioned, MS is associated with a variety of
symptoms that can interfere with a person’s daily life. For this
reason, healthcare professionals who treat patients with MS focus
on reducing the severity and likelihood of attacks and managing
the symptoms of MS to help patients improve their overall quality of life.1,2
Beta interferons are the most commonly prescribed drugs
for the treatment of MS. These injectable drugs are signaling
molecules that regulate a person’s immune cells.1,2
◆
Glatiramer acetate is another injectable drug option for
the treatment of MS. This drug works by changing the balance
of immune cells in the body and may help prevent the immune
system from attacking myelin.1,2
◆
Natalizumab is an intravenous therapy option that is
administered once a month and works by blocking cells from the
immune system from entering a person’s brain and spinal cord.1,2
◆
Alemtuzumab is another intravenous therapy option that
works by targeting a protein on the surface of immune cells
and reducing the number of white blood cells, which can limit
potential damage caused by the white blood cells.1,2
◆
Mitoxantrone is generally used for the treatment of
worsening forms of MS. This drug is administered intravenously
4 times per year, and works by suppressing the activity of white
blood cells, thereby blocking damage due to these cells.1,4
◆
Fingolimod was approved in 2010 and is the first-FDA
approved MS drug available as a pill to be taken orally. This
drug prevents white blood cells from exiting from lymph nodes
and entering a person’s blood, brain, and spinal cord. This oral
medication is recommended to be taken once daily.1,2
◆
Dimethyl fumarate is another oral drug option approved
for the treatment of MS that can help reduce the number of
relapses. Dimethyl fumarate is recommended to be taken twice
daily.1,2
◆
Medications may be prescribed to help patients manage symptoms such as pain, difficulty walking, depression, sexual dysfunction, bladder and bowel problems, and fatigue, among other
MS-related symptoms.1,2 For patients with walking-related issues,
weak or stiff muscles and reflexes, or painful muscle spasms,
muscle relaxants or physical therapy may also be recommended.2
Patients with MS may also consider complementary or
alternative therapies. For instance, exercise, meditation, yoga,
massage, acupuncture, and relaxation techniques, as well as
eating a healthier diet or taking herbal supplements, have been
suggested to help boost a patient’s overall mental and physical
well-being.1,2 The “Health, Diet, and Emotional Support” section
of this guide offers more advice on living a healthier lifestyle
and managing MS.
Teriflunomide is also approved as an oral option for relapsing
forms of MS. This drug is often recommended to be taken once
daily.1,2
6
Health, Diet, and Emotional Support
MS can present with a variety of symptoms that can interfere
with a person’s daily life.1,2 However, there are steps you can
personally take during your journey to help you maintain your
quality of life. This section provides suggestions to help you
stick to your treatment regimen and manage your condition. It is
important to consult your healthcare professional before beginning anything new.
Health
In addition to following your treatment plan, there are other
strategies that you may consider to help you maintain your
quality of life and stay well. Reducing stress by making lifestyle changes and exercising regularly can help patients better
manage their MS.5,6
Engaging in relaxation exercises or activities such as yoga or
meditation can help relieve stress, as can managing your time by
setting short and long term goals and conserving your energy.
Don’t be afraid to ask others for help when you feel stressed, and
put aside time for fun activities.5
For patients with MS, staying active is very important and can
help patients feel better both physically and emotionally. Regular
exercise provides many benefits, including improvements in
cardiovascular fitness, strength, mood, and sense of well-being;
exercise can also help with flexibility and balance. Before beginning an exercise plan, be sure to discuss your intentions with
your healthcare professional. And when exercising, be sure to
listen to your body. Understand that it is okay to take a day off
and rest when necessary. If you experience any side effects while
exercising, be sure to discuss them with your healthcare professional right away.5,6
Diet
Consuming a healthy, nutritious diet is important for patients
with MS. Good nutrition can lead to an increase in energy, a
more positive well-being, and can help you better manage symptoms of MS. Although no specific diet regimen is recommended
to patients with MS, specialists recommend that patients with
MS adhere to a low-fat, high-fiber diet.5,7 Consuming foods or
taking supplements that include omega 3, omega 6, and vitamin
D may also be beneficial, however, it is important to discuss
your plans with a healthcare professional before making any
changes to your diet.7
www.MDMagazine.com
Emotional Support
MS is a chronic, unpredictable disease that can be challenging
to manage, and being diagnosed and living with MS can have a
significant impact on a person’s emotions. Patients with MS may
experience emotional changes such as grief, depression, moodiness, irritability, and anxiety. It is important to recognize these
changes and seek help. Addressing your emotional needs is just
as important as addressing your physical symptoms.8
Openly communicating with your loved ones and healthcare
professionals is important. It is equally important not to hide your
feelings or deny the need to talk to someone. Friends and family
can share their strength and concern with you, and help encourage you along the way; and communicating regularly with your
healthcare professionals can help make you more proactive in
your care. Patients with strong communication skills tend to be
more informed and more likely to adhere to therapy and find it
easier to adjust to changes in care. Joining a local support group
and connecting with other patients can also help you cope by allowing you to share your concerns and hear from others who are
on a similar journey.8 For suggestions on additional support, visit
the resources listed on pages 16 through 23 of this guide.
7
.com MAPPED!
Now revamped for easier reading and navigation on mobile and desktop
AMPYRA does not work for everyone, and
people experience different levels of response
to the medication. Ask your doctor if AMPYRA
may be right for you.
Important Safety Information
Do not take AMPYRA if you
• have ever had a seizure,
• have certain types of kidney problems, or
• are allergic to dalfampridine (4-aminopyridine),
the active ingredient in AMPYRA.
Take AMPYRA exactly as prescribed by your doctor.
Before taking AMPYRA, tell your doctor if you
• have kidney problems or any other medical
conditions
• are taking compounded 4-aminopyridine
• are pregnant or plan to become pregnant.
It is not known if AMPYRA will harm your
unborn baby.
• are breast-feeding or plan to breast-feed. It is
not known if AMPYRA passes into your breast
milk. You and your doctor should decide if you
will take AMPYRA or breast-feed. You should
not do both.
• are taking any other medicines
Stop taking AMPYRA and call your doctor right
away if you have a seizure while taking AMPYRA.
You could have a seizure even if you never had a
seizure before. Your chance of having a seizure is
higher if you take too much AMPYRA or if your
kidneys have a mild decrease of function, which is
common after age 50. Your doctor may do a blood
test to check how well your kidneys are working
before you start AMPYRA.
AMPYRA should not be taken with other forms of
4-aminopyridine (4-AP, fampridine), since the active
ingredient is the same.
AMPYRA may cause serious side effects, including
• severe allergic reactions. Stop taking AMPYRA
and call your doctor right away or get emergency
medical help if you have shortness of breath
or trouble breathing, swelling of your throat or
tongue, or hives;
• kidney or bladder infections.
The most common adverse events for AMPYRA
in MS patients were urinary tract infection, trouble
sleeping, dizziness, headache, nausea, weakness,
back pain, problems with balance, multiple sclerosis
relapse, burning, tingling, or itching of your skin,
irritation in your nose and throat, constipation,
indigestion, and pain in your throat.
For additional safety information, please see
Patient Medication Guide on the following page.
You are encouraged to report negative side
effects of prescription drugs to the FDA.
Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
Brought to you by the publisher of
Mapped! is a registered trademark of MJH Associates, Inc, Plainsboro, NJ 08536
© 2015 Acorda Therapeutics, Inc.
All rights reserved
9/15
AMP3777
Visit this website to learn more about AMPYRA® (dalfampridine)
Extended Release Tablets, 10 mg.
AMPYRA is the only prescription medicine indicated to help
improve walking in adults with MS. This was demonstrated
by an increase in walking speed.
Logo must appear at a width of 1.8782 in or greater
FREE*
60-Day Trial
Download information
and see if you may be
eligible for a free
60-day trial of AMPYRA.
*Limitations and
restrictions apply.
Assess Your Walking
Visit this section of the site and take the self-assessment test to evaluate your
walking ability. E-mail or print out your personalized results and bring them
along to your next doctor’s appointment to aid in discussion.
Real Perspectives
Talking about walking difficulty is a dialogue worth having. Watch the one-onone video series available in this section and hear real patients and healthcare
professionals discuss their experiences with MS and walking.
AMPYRA Assistance
Access this section of the site to learn about AMPYRA Patient Support
Services (APSS) and how APSS can help eligible patients access AMPYRA.
Talking to Your Doctor
Your doctor knows a lot about MS, but you’re the expert on how MS may be
affecting your walking. Use the Doctor Discussion Guide available on this site to
start a conversation with your doctor about any changes you may have noticed in
your walking. Select which questions you’d like to appear in your guide, save the
file as a PDF, and e-mail or print the guide to bring along to your appointments to
ensure that all items are discussed.
AMPYRA Educational Events
Search and register for free educational events that are open to everyone
with MS and their care partners. During these events, healthcare
professionals with an expertise in MS discuss AMPYRA as a treatment
option for people with MS related walking impairment and allow the
opportunity for you to ask questions and interact with other people living
with MS in your community.
AMPYRA® is a registered trademark of Acorda Therapeutics®, Inc.
The stylized Acorda logo is a registered trademark of Acorda Therapeutics®, Inc.
9
1114427AJ-0 2015 TEAR OFF MED GUIDE PI
FDA-Approved Patient Labeling
MEDICATION GUIDE FOR AMPYRA® (am-PEER-ah)
(dalfampridine) Extended Release Tablets
Read this Medication Guide before you start taking AMPYRA and each time you get a
refill. There may be new information. This information does not take the place of talking
with your doctor about your medical condition or your treatment.
What is the most important information I should know about AMPYRA?
AMPYRA can cause seizures.
• You could have a seizure even if you never had a seizure before.
• Your chance of having a seizure is higher if you take too much AMPYRA
or if your kidneys have a mild decrease of function, which is common after
age 50.
• Your doctor may do a blood test to check how well your kidneys are
working, if that is not known before you start taking AMPYRA.
• Do not take AMPYRA if you have ever had a seizure.
• Before taking AMPYRA tell your doctor if you have kidney problems.
• Take AMPYRA exactly as prescribed by your doctor.
See “How should I take AMPYRA?”
Stop taking AMPYRA and call your doctor right away if you have a seizure while
taking AMPYRA.
What is AMPYRA?
AMPYRA is a prescription medicine used to help improve walking in people with multiple
sclerosis (MS). This was shown by an increase in walking speed.
It is not known if AMPYRA is safe or effective in children less than 18 years of age.
Who should not take AMPYRA?
Do not take AMPYRA if you:
• have ever had a seizure
• have certain types of kidney problems
• are allergic to dalfampridine (4-aminopyridine), the active ingredient in AMPYRA
What should I tell my doctor before taking AMPYRA?
Before you take AMPYRA, tell your doctor if you:
• have any other medical conditions
• are taking compounded 4-aminopyridine (fampridine, 4-AP)
• are pregnant or plan to become pregnant. It is not known if AMPYRA will
harm your unborn baby. You and your doctor will decide if you should take
AMPYRA while you are pregnant
• are breast-feeding or plan to breast-feed. It is not known if AMPYRA passes
into your breast milk. You and your doctor should decide if you will take
AMPYRA or breast-feed. You should not do both.
Tell your doctor about all the medicines you take, including prescription and
non-prescription medicines, vitamins and herbal supplements.
Know the medicines you take. Keep a list of them and show it to your doctor and
pharmacist when you get a new medicine.
How should I take AMPYRA?
• Take AMPYRA exactly as your doctor tells you to take it. Do not change your
dose of AMPYRA.
• Take one tablet of AMPYRA 2 times each day about 12 hours apart. Do not
take more than 2 tablets of AMPYRA in a 24-hour period.
• Take AMPYRA tablets whole. Do not break, crush, chew or dissolve
AMPYRA tablets before swallowing. If you cannot swallow AMPYRA
tablets whole, tell your doctor.
• AMPYRA is released slowly over time. If the tablet is broken, the medicine
may be released too fast. This can raise your chance of having a seizure.
• AMPYRA can be taken with or without food.
• If you miss a dose of AMPYRA, do not make up the missed dose. Do not
take 2 doses at the same time. Take your next dose at your regular
scheduled time.
• If you take too much AMPYRA, call your doctor or go to the nearest hospital
emergency room right away.
• Do not take AMPYRA together with other aminopyridine medications,
including compounded 4-AP (sometimes called 4-aminopyridine, fampridine).
What are the possible side effects of AMPYRA?
AMPYRA may cause serious side effects, including:
• serious allergic reactions. Stop taking AMPYRA and call your doctor right
away or get emergency medical help if you have:
- shortness of breath or trouble breathing
- swelling of your throat or tongue
- hives
• kidney or bladder infections
See “What is the most important information I should know about AMPYRA?”
The most common side effects of AMPYRA include:
• problems with balance
• urinary tract infection
• multiple sclerosis relapse
• trouble sleeping (insomnia)
• burning, tingling or itching of your skin
• dizziness
• irritation in your nose and throat
• headache
• constipation
• nausea
• indigestion
• weakness
• pain in your throat
• back pain
Tell your doctor if you have any side effect that bothers you or that does not go away.
These are not all the possible side effects of AMPYRA. For more information, ask your
doctor or pharmacist.
Call your doctor for medical advice about side effects. You may report side effects to the
FDA at 1-800-FDA-1088.
How should I store AMPYRA?
• Store AMPYRA at 59ºF to 86ºF (15ºC to 30ºC).
• Safely throw away AMPYRA that is out of date or no
longer needed.
Keep AMPYRA and all medicines out of the reach of children.
General Information about the safe and effective use of AMPYRA
Medicines are sometimes prescribed for purposes other than those listed in a
Medication Guide. Do not use AMPYRA for a condition for which it was not
prescribed. Do not give AMPYRA to other people, even if they have the same
symptoms that you have. It may harm them.
This Medication Guide summarizes the most important information about AMPYRA.
If you would like more information, talk with your doctor. You can ask your
pharmacist or doctor for information about AMPYRA that is written for health
professionals.
For more information, go to www.AMPYRA.com or call 1-800-367-5109.
What are the ingredients in AMPYRA?
Active ingredient: dalfampridine (previously called fampridine)
Inactive ingredients: colloidal silicon dioxide, hydroxypropyl methylcellulose,
magnesium stearate, microcrystalline cellulose, polyethylene glycol, and titanium
dioxide.
Distributed by: Acorda Therapeutics, Inc.
Ardsley, NY 10502
Issued 12/2014
This Medication Guide has been approved by the U.S. Food and
Drug Administration.
AMPYRA® is a registered trademark of Acorda Therapeutics, Inc.
Manufactured for Acorda under license from Alkermes Pharma Ireland
Limited (APIL) Athlone, Ireland, utilizing APIL’s MatriX Drug Absorption
System (MXDAS®) technology.
MXDAS® is a registered trademark of Alkermes Pharma Ireland Limited (APIL).
U.S. Patent Nos.: US 5,540,938; US 8,007,826; US 8,354,437; US 8,440,703;
and US 8,663,685
©2015, Acorda Therapeutics, Inc. All rights reserved.
1114427AJ-0
Frequently Asked Questions
What is MS?
What do I need to know about an MS attack?
MS is a disease where a person’s immune cells become activated
when they shouldn’t and they attack and destroy the protective
sheath (myelin) that covers nerves and helps to speed nerve
impulses traveling within the nervous system. When myelin is
damaged, the communication between a person’s brain and the
rest of their body is disrupted. In MS, nerves are destroyed and as
the disease progresses, the brain cortex shrinks.1
An exacerbation (or attack) is a sudden worsening of MS
symptoms, or the appearance of new symptoms, that lasts for at
least 24 hours. MS relapses are thought to be associated with the
development of new areas of damage in the brain. The period
during which patients are free from experiencing symptoms is
called remission.1
What are the types of MS?
There is no cure for MS. Rather, healthcare professionals treat
patients with MS by focusing on reducing the length of an
MS attack, slowing overall disease progression, and managing
symptoms of MS. When focusing on treating an initial MS attack, healthcare professionals will most often prescribe an oral or
intravenous steroid such as methylprednisolone or prednisone to
reduce inflammation. Patients who do not respond well to methylprednisolone may be recommended a treatment option called
plasma exchange (plasmapheresis). Treatment options called disease-modifying therapies can help reduce number of relapses and
slow overall disease progression. These therapies are either taken
orally as pills or injected intravenously. Healthcare professionals often prescribe medications to reduce or eliminate symptoms
associated with MS, and patients may consider complementary
or alternative therapies to help boost a their overall mental and
physical well-being.1,2
MS affects each patient differently, and it is difficult to predict
the course of MS. The types of MS include relapsing-remitting
MS (RRMS), primary-progressive MS (PPMS), secondaryprogressive MS (SPMS), and progressive-relapsing MS. RRMS
is the most common type of MS. It normally begins with a new
attack (exacerbation) that is then is followed by a partial or
complete recovery. Patients may not experience another attack
for weeks, months, or even years. PPMS is not characterized by
attacks and remissions; rather, patients with PPMS experience
a steady worsening of symptoms, though patients with PPMS
may occasionally experience temporary or minor relief from
symptoms. SPMS is diagnosed after a patient has had RRMS for
a period of time, but then experiences a change in disease course
with a steady progression of worsening symptoms. Patients with
SPMS don’t experience any periods of remission.1-3 Progressiverelapsing MS is a rare form of MS characterized by steady worsening of symptoms along with occasional exacerbations. The rate
of disease progression will vary for each patient.3
Which tests help diagnose MS?
To help diagnose MS, a thorough review of your medical history
and a neurological exam is necessary.1,2 Your healthcare professional may also suggest blood tests2; a lumbar puncture (spinal
tap), which is performed to collect a person’s cerebrospinal fluid
for examination to check for proteins and inflammatory cells
that are associated with MS; magnetic resonance imaging (MRI)
scans; and evoked potential tests that use visual and electrical stimuli to measure how quickly information travels down a
person’s nerve pathways and assess how accurately the nervous
system responds to stimulation.1,2
Why is MS difficult to diagnose?
How is MS treated?
?
?
MS affects each patient differently, and diagnosing MS can be
difficult because symptoms of MS often mimic those of other
conditions and diseases.1
www.MDMagazine.com
11
Questions to Ask Your Physician9
What type of MS do I have?
How severe is my current condition?
What can I expect in the near future?
Is my condition likely to get worse?
How will my condition be managed?
What are MS exacerbations (attacks)? Can they be prevented? How are they treated?
What should I do if my symptoms worsen, or if I experience new symptoms?
What should I do if MS is causing me to feel anxious or depressed?
What type(s) of treatment do you recommend?
How often do I need to receive treatment?
12
Are there side effects to this treatment?
How will I know if this treatment is effective?
Are there risks to not treating my condition?
Is there a generic version of the medication you are recommending that would be more affordable?
Whom can I speak with about my financial and/or insurance concerns?
What should I do if my MS interferes with my lifestyle?
Are there any complementary or alternative therapies I should consider?
Which other healthcare professionals do you recommend that I see?
Which support programs are available for my family and me?
Do you have any recommendations on where I can learn more about MS?
www.MDMagazine.com
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NOTES
14
Glossary of Important Terms1
Antibodies: Proteins made by the immune system that bind to
Lesion: An abnormal change in the structure of an organ due to
structures (antigens) they recognize as foreign to the body.
disease or injury.
Ataxia: A condition in which the muscles fail to function in a
Myelin: A fatty covering that insulates nerve cell fibers in the
coordinated manner.
brain and spinal cord. Myelin facilitates the smooth, high-speed
Autoimmune disease: A disease in which the body’s defense
transmission of electrochemical messages between these
system malfunctions and attacks a part of the body, itself, rather
components of the central nervous system and the rest of the
than foreign matter.
body. In MS, myelin is damaged through a process known as
Blood-brain barrier: A network of blood vessels with closely
demyelination, which results in distorted or blocked signals.
spaced cells that controls the passage of substances from the
Plasma: The liquid portion of the blood that is involved in
blood into the central nervous system.
controlling infection.
Cerebrospinal fluid: The colorless liquid that circulates
Plasmapheresis: The process of taking blood out of the body
around and through the cavities of the brain and spinal cord.
and removing components in the blood’s plasma that are thought
Demyelination: Damage caused to myelin by recurrent
to be harmful before transfusing the blood back into the body
attacks of inflammation. Demyelination ultimately results
(also called plasma exchange).
in nervous system scars, called plaques, which interrupt
Plaques: Patchy areas of inflammation and demyelination
communications between the nerves and the rest of the body.
typical of MS. Plaques disrupt or block nerve signals that would
Exacerbation: A sudden worsening of symptoms or the
normally pass through the regions affected areas of the body.
appearance of new symptoms that lasts for at least 24 hours.
White matter: Nerve fibers that are the site of many MS
Gray matter: Part of the brain that contains nerve cells and
lesions and that connect areas of gray matter in the brain and
has a gray color.
spinal cord.
Immunosuppression: Suppression of immune system
functions. Many medications under investigation for the
treatment of MS are immunosuppressants.
Interferons: Signaling molecules that regulate immune cells.
www.MDMagazine.com
15
Patient Education Resources
Multiple Sclerosis
Foundation
www.msfocus.org
A DDR ES S:
6520 North Andrews Avenue
Fort Lauderdale, FL 33309
CONTACT INFO:
Phone: 1-888-673-6287
E-mail: [email protected]
Established in 1986, the Multiple Sclerosis Foundation (MSF) “provides a
comprehensive approach to helping people with MS maintain their health and
well-being.” MSF offers programs and support services that heighten public
awareness of MS and help patients, caregivers, and loved ones better understand and manage MS. MSF provides all services, information, literature, and
subscriptions to its publications free of charge. The MSF toll-free hotline helps
patients and their loved ones connect with caseworkers and peer counselors who
specialize in MS.
Resource Checklist
✓ Information on MS
✓ Tips for coping
✓ Information on mobility and accessibility
✓ Insurance and financial information
✓ Free publications
✓ Helpline
✓ Information on clinical trials
MedlinePlus—Multiple
Sclerosis
www.nlm.nih.gov/medlineplus/multiplesclerosis.html
A service of the US National Library of Medicine (the world’s largest medical
library), MedlinePlus is “the National Institutes of Health’s website for patients
and their families and friends.” The site provides information on more than 950
diseases and conditions, including MS, and highlights wellness issues important
to patients and their loved ones.
A DDR ES S:
8600 Rockville Pike
Bethesda, MD 20894
CONTACT INFO:
E-mail: Online
16
Resource Checklist
✓ Tips for coping
✓ Information on mobility
National Institute of
Neurological Disorders and
Stroke—Multiple Sclerosis
www.ninds.nih.gov/disorders/multiple_sclerosis/
multiple_sclerosis.htm
A DDR ES S:
PO Box 5801
Bethesda, MD 20824
CONTAC T INFO:
Phone: 1-800-352-9424
E-mail: Online
The National Institute of Neurological Disorders and Stroke (NINDS) conducts
and supports research on brain and nervous system disorders including MS. The
mission of the NINDS is to seek fundamental knowledge about the brain and
nervous system and to use that knowledge to reduce the burden of neurological disease. To accomplish this goal, the NINDS supports and conducts basic,
translational, and clinical research on the normal and diseased nervous system.
The Institute also fosters the training of investigators in the basic and clinical neurosciences, and seeks better understanding, diagnosis, treatment, and
prevention of neurological disorders.
Resource Checklist
✓ Additional resources
✓ Publications
National Multiple Sclerosis
Society
www.nationalmssociety.org
CONTAC T INFO:
Phone: 1-800-344-4867
The National Multiple Sclerosis Society is “a collective of passionate individuals
who want to do something about MS now—to move together toward a world
free of multiple sclerosis.” By means of its chapters located in every state, the
society assists people affected by MS by funding cutting-edge research, driving
change through advocacy, facilitating professional education, and providing
programs and services that help people with MS and their families move their
lives forward.
Resource Checklist
✓ Tips for coping
✓ Healthcare professional locator tool
✓ Local support services
✓ Personal stories
www.MDMagazine.com
17
The Educated Patient®
www.theeducatedpatient.com
The Educated Patient® is a collection of disease-specific articles and resources
designed to provide patients, their families, and their caregivers with information
to help them better understand their condition and their options for self-care.
Visit The Educated Patient® website for information and resources specifically
for people affected by MS.
Resource Checklist
A DDR ES S:
666 Plainsboro Road
Building 300
Plainsboro, NJ 08536
CONTAC T INFO:
Phone: 609-716-7777
✓ Feature articles
✓ The OTC Guide™ patient guides
✓ Cou-Co® resource for pharmacy coupons and co-pay assistance
Support Group Resources
MS Neighborhood
www.msneighborhood.com
Run by Accredo Health Group, Inc, a specialty pharmacy, MS Neighborhood provides resources to help patients cope with a diagnosis of MS, and continue living
a full life. The MS Neighborhood provides information regarding MS, treatment
options, and financing care. Also included is access to message boards, which allows patients to make connections and share advice and support. To get started,
simply log on to msneighborhood.com. After registering for free, you will have
access to connect with more than 5700 active message board users.
A DDR ES S:
1640 Century Center Parkway
Memphis, TN 38134
CONTAC T INFO:
18
Resource Checklist
✓ Financial information
✓ Online message boards
MSWorld
www.msworld.org
With over 150,000 members and growing, the primary mission of MSWorld, Inc,
is to end the isolation that people experience when diagnosed with MS.
MSWorld is an online resource offering support and information for people facing
the challenges of living with MS. Run by a team of volunteers, each living with
MS, the 'Patients Helping Patients' approach is unique and effective in providing
an insightful, compassionate, and comfortable environment.
CONTACT INFO:
Resource Checklist
✓ Online chat
✓ Online message board
✓W
ellness magazine
✓ Wellness Center
✓ Conference Center
✓ Creative Center
✓ Resource Center
✓ Social media
Multiple Sclerosis
Association of America
www.mymsaa.org
A DDR ES S:
375 Kings Highway North
Cherry Hill, NJ 08034
CONTACT INFO:
Phone: 1-800-532-7667
www.MDMagazine.com
The Multiple Sclerosis Association of America (MSAA) is a leading resource for
the entire MS community. MSAA provides ongoing support and direct services to
individuals with MS, their families, and their care partners. MSAA offers many
programs and services to assist people with MS and help them manage the everchanging course of multiple sclerosis. MSAA advocates a “shared management”
philosophy, whereby both the patient and healthcare providers work together to
achieve the best possible health outcomes for the patient.
Resource Checklist
✓ Online webinars, videos, and publications
✓ My MS Manager™ mobile app to help track and report disease activity
✓ Helpline
✓ Resource locator tool
✓ Educational events
✓ Safety and mobility equipment
19
Center for Medicare
Advocacy, Inc.
www.medicareadvocacy.org/medicare-info/chronicconditions/multiple-sclerosis-and-medicare
A DDR ES S:
PO Box 350
Willimantic, CT 06226
CONTAC T INFO:
Phone: 860-456-7790
E-mail: Online
The Center for Medicare Advocacy, Inc (CMA), is a nonprofit, non-partisan law
organization that is staffed by attorneys, nurses, legal assistants, and information management specialists. CMA provides education, advocacy, and legal
assistance to help older adults and people with disabilities access Medicare and
healthcare. In accordance with that mission, the CMA website provides resources
to address a variety of general and specific concerns that patients diagnosed with
MS may have.
Resource Checklist
✓ Information on Medicare
✓ Enrollment information
✓ Coverage and appeals information
HealthWell Foundation
www.healthwellfoundation.org
The HealthWell Foundation provides financial assistance to eligible patients who
can’t afford their copayments, healthcare premiums, coinsurance, or deductibles
for certain medications and therapies. The HealthWell Foundation has assisted
over 200,000 patients and has awarded over 322,000 grants since 2003.
Resource Checklist
A DDR ES S:
PO Box 4133
Gaithersburg, MD 20885
✓ Financial assistance
✓ Recent news
✓ Patient stories
✓ Pharmacy Card Lookup Tool
CONTACT INFO:
Phone: 1-800-675-8416
20
National Multiple Sclerosis
Society: Insurance &
Financial Information
www.nationalmssociety.org/Resources-Support/
Insurance-and-Financial-Information
CONTAC T INFO:
Phone: 1-800-344-4867
The National Multiple Sclerosis Society is “a collective of passionate individuals
who want to do something about MS now—to move together toward a world
free of multiple sclerosis.” By means of its chapters located in every state, the
society assists people affected by MS by funding cutting-edge research, driving
change through advocacy, facilitating professional education, and providing
programs and services that help people with MS, and their families, move their
lives forward.
The “Insurance & Financial Information” section of the society’s website provides
information and resources to people with MS about staying financially secure by
knowing how to take best advantage of their health coverage options and needs,
by staying insured when circumstances change, and by planning for their future
needs.
Resource Checklist
✓ Information on Medicare
✓ Resources for the uninsured and underinsured
✓ Disability information
✓ Information on legal rights
✓ Glossary of terms
www.MDMagazine.com
21
Resource Reference Chart
PATIENT EDUCATION RESOURCES
Website
Address
Contact
Multiple Sclerosis Foundation
www.msfocus.org
Multiple Sclerosis Foundation
6520 North Andrews Avenue
Fort Lauderdale, FL 33309
Phone: 1-888-673-6287
MedlinePlus—Multiple Sclerosis
www.nlm.nih.gov/medlineplus/multiplesclerosis.html
US National Library of Medicine
8600 Rockville Pike
Bethesda, MD 20894
E-mail: Online
National Institute of Neurological Disorders and
Stroke—Multiple Sclerosis
www.ninds.nih.gov/disorders/multiple_sclerosis/
multiple_sclerosis.htm
NIH Neurological Institute
PO Box 5801
Bethesda, MD 20824
Phone: 1-800-352-9424
E-mail: Online
Phone: 1-800-344-4867
National Multiple Sclerosis Society
www.nationalmssociety.org
The Educated Patient®
www.theeducatedpatient.com
Intellisphere, LLC
666 Plainsboro Road
Building 300
Plainsboro, NJ 08536
Phone: 609-716-7777
E-mail: info@theeducatedpatient
.com
SUPPORT GROUP RESOURCES
Website
Address
Contact
MS Neighborhood
www.msneighborhood.com
Accredo Health Group, Inc.
1640 Century Center Parkway
Memphis, TN 38134
MSWorld
www.msworld.org
Multiple Sclerosis Association of America
www.mymsaa.org
22
Multiple Sclerosis Association of
America
375 Kings Highway North
Cherry Hill, NJ 08034
Phone: 1-800-532-7667
FINANCIAL ASSISTANCE RESOURCES
Website
Address
Contact
Center for Medicare Advocacy, Inc.
www.medicareadvocacy.org/medicare-info/
chronic-conditions/multiple-sclerosis-andmedicare
Center for Medicare Advocacy, Inc.
PO Box 350
Willimantic, CT 06226
Phone: 860-456-7790
E-mail: Online
www.healthwellfoundation.org
PO Box 4133
Gaithersburg, MD 20885
Phone: 1-800-675-8416
National Multiple Sclerosis Society:
Insurance & Financial Information
www.nationalmssociety.org/ResourcesSupport/Insurance-and-FinancialInformation
Phone: 1-800-344-4867
REFERENCES
California San Francisco (UCSF) Medical Center website. http://www.
1. Multiple sclerosis: hope through research. National Institute of
ucsfhealth.org/education/maintaining_a_healthy_lifestyle_with_multiple_
Neurological Disorders and Stroke (NINDS) website. http://www.ninds.nih.
sclerosis. Accessed September 29, 2015.
gov/disorders/multiple_sclerosis/detail_multiple_sclerosis.htm?css=print.
6. Exercise. National Multiple Sclerosis Society website. http://www.
Accessed September 29, 2015.
nationalmssociety.org/Living-Well-With-MS/Health-Wellness/Exercise.
2. Multiple sclerosis. Mayo Clinic website. http://www.mayoclinic.org/
diseases-conditions/multiple-sclerosis/home/ovc-20131882. Accessed
7. Diet & nutrition. National Multiple Sclerosis Society website. http://www.
September 29, 2015.
nationalmssociety.org/Living-Well-With-MS/Health-Wellness/Diet-Nutrition.
3. Multiple sclerosis health center: what are the different types of multiple
sclerosis? WebMD website. http://www.webmd.com/multiple-sclerosis/
8. Emotional health. National Multiple Sclerosis Society website. http://
guide/multiple-sclerosis-understanding-the-differences-in-ms. Accessed
www.nationalmssociety.org/Living-Well-With-MS/Health-Wellness/
September 29, 2015.
Emotional-Health. Accessed September 29, 2015.
4. Novantrone. National Multiple Sclerosis Society website. http://www.
9. Laskey J. Multiple sclerosis: questions to ask your doctor. Everyday Health
nationalmssociety.org/Treating-MS/Medications/Novantrone. Accessed
website. http://www.everydayhealth.com/multiple-sclerosis/multiple-
September 29, 2015.
sclerosis-questions-to-ask-your-doctor.aspx. Accessed September 29, 2015.
5. Maintaining a healthy lifestyle with multiple sclerosis. University of
www.MDMagazine.com
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