You or someone you care about may have been diagnosed with progressive
multiple sclerosis (MS). If that’s the case, obtaining
information about this type of MS is a good start towards managing
its challenges.
Living with progressive MS is a process. Some days are going
to be tougher than othes. But with information and support, you
can find ways to live well with MS.
Understanding Progressive MS: FAQs
1. What is going on in my body?
Your central nervous system (CNS) is comprised of your brain
and spinal cord. The CNS communicates with the rest of your
body by sending electrical messages along your nerves. Nerve
fibres have a layer of protection around them called myelin
which is crucial for transmitting these messages quickly.
We do not yet understand why, but with MS, your immune system
mistakenly attacks the myelin, leading to scarring or demyelination.
As well as damage to the myelin, injury to the nerve itself
may also occur. As a result, messages get sent through the
body too slowly or not at all. For example, when your brain
tells your arm to move, your arm may be very slow to respond
or may not move at all. The scarring or lesions can occur
throughout the CNS and their location will have some impact
on the symptoms experienced.
Find more information on Types
of MS on our website.
2. My doctor said there is no test to confirm whether I have
progressive MS. How does he/she know I have it?
There is no test to confirm progressive MS. Instead, this
diagnosis is based on monitoring how your MS progresses.
This is done by recording a description of how your symptoms
have evolved over time together with measuring changes on
your neurological exam (your exam is graded according to
the EDSS score). Perhaps surprisingly, other tests such as
MRI scans or spinal fluid exams do not indicate the phase
of your MS. It is important that you let your doctor know
if you’ve noticed changes in your level of functioning.
Whether or not such changes represent progression of your
illness, discussing them with your doctor will help you to
develop the best health care strategy possible.
3. What can I expect with progressive MS?
It is hard for your doctor to predict what your future holds
because MS varies so much between individuals and there is
no typical rate of progression or disability. Some people
with progressive MS may, at some point, experience a plateau,
where their progression seems to level off. Others may become
very disabled. Many people fear that they will die from their
MS, but this is very unusual. In the small percentage who
have a shortened life span, it is almost always due to complications
associated with severe progression. Minimizing such complications
will be beneficial for an individual’s health, quality
of life, and ability to function.
The important thing to remember is that there are resources
every step of the way to help inform and support you. This
information and support will assist you in finding the best
ways of managing your illness, both physically and emotionally.
Improve your quality of life
Before looking at treatments for progressive MS and symptom
management, let’s look at some general ways for you to
improve your quality of life. Coping with a chronic illness such
as MS takes planning and can be especially challenging if you
experience fatigue, depression, cognitive difficulties, or have
trouble getting around. Below are some strategies that might
be helpful.
» Try to visit a specialized MS clinic
Located across the country, these clinics offer a wide range
of services and supports, provided by a multidisciplinary
health care team including a neurologist with advanced knowledge
of MS. Most MS clinics also have a specialized nurse, who
coordinates initial and long-term management issues, and
teaches you about medications (including how to take them)
as well as self-care strategies. Ask the MS Society about
whether there may be financial assistance to cover some of
the costs of a visit to a MS clinic — either through
the MS Society or through provincial subsidies.
» Get the most out of visits to your physicians
Let’s begin this section by clarifying the roles of
a few key healthcare professionals:
Family physician: provides general health
care, including check ups, immunizations, and preventative
care. Your family doctor can help treat simpler problems
(such as urinary tract infections) and can refer you to
other specialists.
Neurologist: as well as determining
your initial diagnosis, a neurologist will prescribe MS
treatments and medications to manage your MS. Regular annual
visits are recommended. The neurologist will refer you
to other specialists, such as pain specialists, or urologists
(for urinary symptoms not related to a urinary infection),
etc.
It’s important to work with your health professionals
to make sure you get the best care. Maximize the value of
each visit by preparing in advance.
Think about what you want to accomplish during your upcoming
visit.
Make a list of important questions or concerns you would
like to discuss.
Mention any problems or questions you have about your
medications.
Let your doctor know if you have seen any other healthcare
professionals recently that she may not know about.
Consider bringing a friend or family member to your appointment
for support and to help keep track of anything discussed.
Because MS symptoms can be so diverse, people tend to assume
that any symptom is related to their MS. But this is not
always the case. Be sure to see your doctor about symptoms
that are troubling you. Your doctor or community pharmacist
is likely a very good source of information, but sometimes
he/she may not be as knowledgeable about MS as you. Help
your doctor to help you by sharing new information. For instance,
sometimes people with MS will bring their doctor information
about symptom medications their doctor may not be aware of.
The MS Society of Canada can assist by offering you information
on existing symptom management medications and techniques.
If you’ve tried to partner with your doctor and find
that he/she simply does not offer you the support you need,
consider finding another doctor.
» Use rehabilitation services
Rehabilitation, also called rehab, can help you maintain
or reach your best physical, emotional, and functional level
no matter what disabilities you have. It can play a very
important role in enhancing your day-to-day living. One type
of rehab, referred to as restorative rehab, aims to regain
function after it is lost, which can be difficult (for example,
reducing spasticity or strengthening muscles). It tends to
be focused with measurable results (for example, improved
mobility in a specific limb).
With progressive MS, maintenance or preventative rehab tends
to play a larger role. The goal of this type of rehab is
to make up for lost functions with strategies and techniques
that let a person function at their highest level despite
the severity of their MS. Maintenance rehab focuses on the
whole person and is more general (for example, helping an
individual to maximize independence). Below are a few specific
types of rehab specialists. Be sure to ask your doctor about
how each might help you.
Physiotherapists (PTs) evaluate your movement
and functioning — including your strength, mobility,
balance, posture, fatigue, and pain management. PTs can help
you meet the physical challenges and demands of your life.
They can also suggest an appropriate exercise regime and
should be consulted regarding the proper use of motor aids
such as orthotics (shoe inserts or braces), canes, crutches,
walkers, wheelchairs, or scooters.
Occupational therapists (OTs) help work
on the every day skills that you need to function as independently
as possible at home and at work. They target upper body strength,
mobility, and coordination and can help you use assistive
technologies to increase ease of access and independence.
OTs offer ways to simplify work or manage fatigue and stress.
They can also teach you strategies for functioning despite
thinking, sensation, or vision problems.
Psychologists and psychiatrists may be
helpful if you experience cognitive or mood changes. Having
to deal with MS can cause depression for some, but the disease
process itself can also play a role. Depression can have
a powerful impact on a person’s estimation of their
quality of life. It is important to know that while depression
is very common in people with MS, it is also very treatable
through medications and psychological therapy.
Speech and language therapists help work
on speech or swallowing problems that result from impaired
muscle control. Sometimes they are also involved in the evaluation
and management of cognitive dysfunction, especially when
it affects communication.
Social workers assess social needs and
can help refer you to resources about income maintenance,
insurance, housing, long-term care options, etc.
There are many other resources to help you, including psychiatrists,
neuropsychologists, dieticians, orthotists, and urologists,
to name a few. If you think you would benefit from any of
these specialists, consider visiting an MS clinic, or speak
to your doctor about possible referrals.
» Stay healthy
There’s so much you can do to optimize your health.
No diet has been proven to impact the course of MS. That
said, it makes sense to choose healthy, nutritious foods.
A diet low in saturated fats (meat, eggs, dairy products)
and high in monounsaturated fats (canola oil, olives and
olive oil, nuts, seeds, avocados) and polyunsaturated fats
(flaxseed oil, fish and fish oil) may be helpful. Some MS
patients believe that avoiding wheat and dairy products helps
their symptoms. Eating plenty of fruits, grains and vegetables
helps to keep your heart healthy, avoid constipation, and
maintain a healthy weight.
In addition, people with MS sometimes wonder whether they
should take extra vitamins or food supplements. There is
no scientific evidence that they will make a difference with
perhaps one exception. Researchers are now looking carefully
at vitamin D as a way to possibly reduce the risk of MS developing
in the first place. In terms of food supplements, people
with MS should avoid those that claim to boost the immune
system. That could be a problem in MS, which results because
of a misdirected immune attack on myelin within the central
nervous system.
As mentioned, vitamin D – whether delivered through
sunlight, fish such as salmon or tuna, milk, or in pill form – may
play a role in preventing MS. Many physicians now suggest
that people with MS themselves might benefit from taking
a daily intake of 1,000-2,000 IU of vitamin D because many
people in Canada are vitamin D deficient and this deficiency
may play a role in the disease. This idea is interesting
but unproven.
If you do change your diet radically or increase your intake
of vitamins, it is a good idea to consult your doctor or
a nutrition specialist. You could also contact the nutrition
service of your community health service or provincial health
ministry. In addition, the MS Society’s Healthy
Eating: A guide for persons with multiple sclerosis examines
what makes up a healthy diet.
Exercise can be of great benefit in MS
however it is important to find the right balance of activity
and rest for you. Studies have shown that appropriate exercise
can improve fitness and decrease fatigue. However, this does
not mean overdoing it. Too much exercise can result in more
fatigue and weakness.
It is also important to try to keep your temperature down
when exercising, as this can worsen symptoms or produce new
ones. For this reason, some people prefer to exercise in
a cool pool where possible, or will take a cool bath before
and after their exercise. It is best to consult with a professional
(such as a physiotherapist) when choosing an exercise regime
to ensure that it is suitable for you. There are many different
types of exercise: some that increase mobility through stretching
and range of motion (helpful for weakness and stiffness),
some that improve balance, some that are aerobic, and some
for relaxation. The best exercise regime is balanced and
helps you feel better and stronger. The MS Society of Canada
offers the publication, Everybody
Stretch, which approaches stretching and exercise from
varying levels of ability.
Try to decrease your stress levelss
Stress is generally not helpful to well being. Ensure that
you get some time to relax and surround yourself, where possible,
with people and things that are fulfilling to you. You might
even consider regular meditation practice. Simple practices
such as meditating for 15 minutes a day, learning yoga or
tai chi, or going for a massage can help relieve tension
and have psychological benefit. Ask your local community
centre or MS chapter about classes being taught in your neighbourhood.
You might wish to refer to the MS Society publication, Taming Stress in MS.
» Asking for help can be a strength
Everyone needs help sometimes. Consider your friends, family,
doctor, local MS chapter,
or trained counsellors when you’re looking for support.
Your friends and family may appreciate your explaining how
they can best support you. Sometimes people want to help, but
they don’t know how to be the most helpful. Some people
with MS want very specific support (for example, help getting
groceries every couple of weeks). In other cases, the situation
may be quite the reverse. Sometimes people with MS have to
ask well-meaning family or friends not to rush to help every
single time they have difficulty doing something.
Whatever ‘help’ means to you, asking for it does
not need to make you feel less capable. Instead, asking for
support can enable you to be more functional, by freeing up
more energy, time, or emotions for other priorities.
» Consider group support
Talking about MS with others can offer you the support you
need to get through difficult times. It can also connect you
to a huge network of people who are coping with MS. By getting
involved with support groups, you not only increase your network
of knowledge, but you may find others that can relate to your
struggles, and who may help you to uncover resources (both
inner and outer) that can improve your situation. The MS Society
of Canada has many self-help groups. Call your local
chapter for more information.
» Educate yourself
Educate yourself about MS, but always consider the source
of information. Check with your doctor, nurse, or the MS Society
to find out if the information you’ve found is correct.
Here are different sources of information available to you:
MS Society of Canada – is accurate,
up-to-date, and can help you assess the information you’ve
found. Updated information
on research can be found by visiting the Society’s
website.
Call toll-free in Canada: 1-800-268-7582
Email: info@mssociety.ca
Website: www.mssociety.ca
Medical journals – a source of
credible and current information on MS, but may be difficult
to understand.
Medical or science magazines – explain
the findings in recent medical journals and how this information
affects your life. You may find these sources easier to
understand.
Articles in newspapers – information
may be worth looking into further, but often sensationalized,
and not always accurate.
Books or websites – can be good
sources of information but be careful that the authors aren’t
trying to sell you an idea or product.
» Surround yourself with people and things that give you pleasure and energy
Happiness can come from something very simple like a conversation
with people you love, enjoying a new craft or hobby, laughing
with a friend, listening to music, or being outdoors. With
a progressive illness such as MS, you may need to re-examine
your dreams and plans as there may be new limits that challenge
you. But having a chronic illness with disability does not
have to mean that you have less meaning, activity, or enjoyment
in your life.
