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2 What is MS?
Contents
A word from Eiona, who has MS 4
4 What is MS?
Five things to know
2 Everyone’s MS is different
5 If you have MS it may mean making some changes but you can
still achieve what you always wanted to
What is MS? 5
About this booklet
Perhaps you’ve recently Life with MS these days is less
been told you have multiple about what you can’t do, but more
sclerosis (MS). Or maybe about what you can do. At the MS
Society we’re here to help you or
someone you know has it
the person you know with MS find
and you’d like to know more. ways to live out your plans and
We hope this booklet goes hopes.
some way to answering your
questions. Where you see a word in bold in
this booklet, it means you can turn
Knowing more about MS can help to the back and find it explained.
you feel more in control of what’s
happening. Hopefully it’ll make “I was just sent
you less uncertain or worried. away with my
diagnosis. No-one
Living with MS can bring real gave me any
challenges but a lot has changed information or help
since the first effective treatments then, which made
became available in the nineties. things worse and
What we know about MS is made me worry
growing all the time. Research more. Thankfully I
into even better treatments is contacted the MS
making progress, new ones Society for information
keep being launched, and and the MS Helpline
recently we’ve seen some major for some much-needed
breakthroughs. help.”
Carole
What is MS? 7
What is MS?
Multiple sclerosis, or MS, is a These nerves control lots of
neurological condition. That different parts of your body and
means it affects your nerves. how they work. That’s why, if
you have MS, you can get its
The specialist doctors who
symptoms in many parts of your
look after people with MS are body and it can affect lots of
called neurologists. things your body does. This is why
You can’t catch MS from everyone’s MS is different.
someone. You get it when your
“Yes, MS is serious
immune system isn’t working
and, yes, it does
properly. Your immune system
change your life.
normally protects you by fighting
But you can still
off infections. In MS it attacks your
enjoy your life.”
nerves by mistake.
Louisa
“MS is a significant
part of me, but it’s
far from the most
interesting part.”
Helen
8 What is MS?
What’s happening in MS?
Your brain and spinal
cord make up your
central nervous system.
Your spinal cord connects
nearly all parts of your body
to your brain. Messages
go between your brain and
spinal cord, travelling along
the nerves. These signals
control how parts of your
body move or work and let
you feel things like pain,
touch and so on.
What is MS? 9
travel along it. When myelin your nerve to tell a part of your
becomes damaged, messages body what to do.
find it harder to get through – or
can’t get through at all. That’s A cable has a plastic covering
when symptoms of MS begin. around the wire to protect it from
Eventually so much damage takes damage. If the cable’s covering
place that it can’t be repaired and gets broken it can mean electricity
the nerve dies. won’t get through like it should
and the machine won’t work
Think of this being like an electric properly. Myelin protects your
cable. The wire inside it is like your nerves in the same way.
nerve. Electricity travels down the
wire so the machine at the other
end will work. This is like when
your brain sends a signal down
Myelin as it should be. Messages travel Myelin damaged. Messages are disrupted
smoothly
10 What is MS?
Why do some people
get MS?
In the UK around 1 in 600 just one thing but a combination of:
of us has MS. That’s over
•• your genes
100,000 people. Each week
•• the environment
about 100 people are told
they have it. Nearly three •• your lifestyle
times as many women have
MS than men. We don’t know Genes
why yet. MS isn’t directly passed on from
a parent to their child. There’s no
one gene that causes MS. In fact,
over 100 genes might affect your
chances of getting it. Genes alone
don’t decide who gets MS.
In the UK people are most likely
to find out they have MS in their Identical twins have the same
thirties, forties and fifties. But the genes. But when one gets MS, the
first signs of MS often start years other usually doesn’t get it. That
earlier. It’s rare that children get MS. twin does have a higher risk of
getting MS but most don’t get it.
Nobody knows for sure why MS This shows genes play a part but
happens to some people. What that’s far from the whole story.
we know is growing all the time.
Slowly we’re putting together If you have a close relative with
more pieces of the puzzle. MS, the chances you’ll get it are a
bit higher, but the risk is still low.
Certain things seem to play a part Researchers have come up with
in triggering MS. It’s probably not figures for the risk of getting MS.
What is MS? 11
Risk of MS in your lifetime
If you have:
12 What is MS?
Vitamin D because this far north people
Years ago it was noticed that more are even more likely to be low in
people have MS the further away vitamin D.
you go from tropical countries
Other reasons you might not have
near the equator with a lot of sun.
enough of this vitamin are:
This is true no matter what your
ethnic background is. Researchers •• you have genes that make it
started to look at a lack of vitamin harder for your body to make it
D, the ‘sunshine vitamin’, as a
•• you’re a pregnant woman
possible cause of MS.
•• you have dark skin (then it’s
More and more studies are harder for your skin to make
pointing to a link between MS and vitamin D)
vitamin D. The risk seems highest
if you’re low in this vitamin before Guidelines say people in Britain
you become an adult. should think about taking extra
vitamin D, especially from
Lots of us in less sunny countries September to April. But that
like the UK become low in advice is to keep your bones
vitamin D, especially when it’s not healthy. There’s no proof yet that
summer. extra vitamin D protects against
getting MS. Researchers are
We get some vitamin D from
looking into that.
food (oily fish, eggs, spreads and
breakfast cereals with added If you already have MS, studies
vitamin D, for example). But most have found a link between
of it comes from sunshine. Our levels of vitamin D and how bad
skin makes this vitamin when people’s MS is. Many people with
we’re in the sun. MS take extra vitamin D. There’s
no hard evidence yet that doing
Within the UK, there are higher
this slows down MS or helps
rates of MS in Scotland and
Northern Ireland. This could be
14 What is MS?
with symptoms but studies are - is also linked to a higher risk of
looking into this, too. getting MS.
What is MS? 15
Of course, not everyone who’s MS is no-one’s fault
obese gets MS and not everyone Hearing about things that may
who has MS is or was very cause MS might make you ask:
overweight. But if the risk of ‘Could I have done something
getting MS is on your mind, for to avoid it?’ The answer’s no,
example, because a close relative because no-one knows for sure
has it, your weight is a risk factor which things came together to
you can change. cause MS in each person. And in
the past we all knew much less
about what might cause MS. So
you weren’t in a position to do
anything to stop it.
What are the symptoms?
MS damages nerves in Types of MS symptoms
different parts of your brain No-one is likely to get all the
and spinal cord. Where symptoms of MS. But here are the
this damage is will affect more common ones.
which part of your body gets
•• ‘Fatigue’. This feeling of being
symptoms.
exhausted isn’t like normal
Symptoms can be unpredictable. tiredness. It can make doing
They can change from day to things (even thinking) very
day, even hour to hour. They hard or impossible
could last days, weeks or months. •• Strange feelings. You may get
Depending on the type of MS, numbness or tingling in your
these symptoms could stay, ease arms, legs, hands or feet
off or go away completely. •• Eye problems. Your sight
might become blurred or you
Some people find getting hot,
may see double. For a while
tired or stressed, or exerting
you might not see through one
themselves can make symptoms
or both eyes
worse or trigger a relapse (a
flare up of your MS symptoms). •• Feeling dizzy and having
Everyone has their own problems with your balance
symptoms and they won’t be the •• Pain
same as other people’s. And how •• Problems walking
MS develops over time is unique •• Problems with talking or
to each person. swallowing
What is MS? 17
•• Muscle stiffness and spasms balance, memory or thinking. It
(sudden movements you can’t might not be easy to explain these
control) to people.
•• Your bladder or bowels not
When you have MS it can be
working properly
frustrating if someone says ‘you
•• Shaking in your arms or legs look so well’. It can feel like your
(called ‘tremor’) very real but invisible symptoms
•• Forgetting things and are being overlooked. This can be
difficulties with your thinking even more of an issue at work.
•• Sexual problems
“I manage my
•• Emotional issues. Feeling
time carefully due
depressed or crying a lot can
to fatigue but I
be a normal reaction to being
sometimes have
told you have MS but it can
a day where I sail
also be one way MS affects
through without
your brain
much difficulty at
We have information on all the all. Those days are
symptoms of MS. Find them at: precious and I really
appreciate them.
mssociety.org.uk/ms-resources/ People without
key-publications MS would just take
that for granted!”
Symptoms you can’t see
Ellie
If people see someone has
a symptom of MS they can
understand and offer help. But If you don’t have MS, bear these
some symptoms you can’t see. invisible symptoms in mind.
Someone might not want to do
Things that aren’t obvious include something because their MS is
pain, bladder or bowel problems, making them feel exhausted, for
fatigue and difficulties with your
18 What is MS?
example. It’s not because they’re down in how fast your symptoms
being lazy or can’t be bothered. or disability get worse. This
can mean fewer symptoms to
What can be done about deal with. But when symptoms
symptoms? do happen there are ways of
If your MS has relapses treating managing them. Turn to page
it early with a disease modifying 30 to learn more.
therapy (DMT) can make a real
difference. It can mean you get
fewer relapses and you see a slow
How is MS diagnosed?
Diagnosing MS isn’t easy. Four types of tests are used to
Symptoms can be confused diagnose MS:
with more common
•• a neurological examination
problems. Doctors must rule
•• MRI scans
these out first before they
•• ‘evoked potentials’ tests
look for signs of MS. It can
•• a lumbar puncture
take a long time from when
you first notice something’s What are the tests
wrong to when you’re looking for?
officially told you have MS. A neurologist looks for signs of
There’s no simple test, like a blood how much damage has happened
test, for MS. Only a neurologist to your central nervous system.
can diagnose it, not your GP. They need to know that damage
If your GP thinks MS could be happened at different times and
causing your symptoms they’ll in at least two different parts of
send you to a neurologist for tests. your brain or spinal cord. In most
cases MRI scans are used to help
You can learn more in our show this.
factsheet ‘Have I got MS? And why
is it taking so long to find out?’ Neurological examination
A neurologist will ask about
Seeing the neurologist your ‘history’, meaning your
When you see a neurologist it health problems and symptoms,
can take a few tests and several now and in the past. A physical
months before you have a examination will check your
final diagnosis. This can be a movements, reflexes and senses,
frustrating time. such as your eyesight. Even if a
20 What is MS?
neurologist suspects MS other of fluid is taken out and checked
tests are needed to be sure. for signs that your immune
system has been active in your
MRI (magnetic resonance brain and spinal cord (which
imaging) doesn’t happen if you don’t have
A machine called an MRI scanner MS). These signs, which can
takes pictures of your brain or include ‘antibodies’, show that
spinal cord. You lie on a bed that you’re very likely to have MS.
slides into the scanner where you
stay for a few minutes to up to You’re given something to numb
an hour. where the needle goes in. It can
still be uncomfortable and might
Using strong magnetic fields and give you a headache. Now we
radio waves it builds up a picture have MRI scans, lumbar punctures
of the inside of your brain or spinal aren’t used so often.
cord. On the scan an MS specialist
can see any inflammation and ‘Evoked potentials’ test
damage MS has caused. These This test measures how fast
areas of damage are called messages travel between your
lesions or plaques. Having a scan brain and your eyes, ears and
is painless but can be a bit noisy skin. If MS has damaged the
and feel a little claustrophobic. myelin around your nerves in
these parts of your body your
MRI scans are the most accurate
reactions will be slower.
way of diagnosing MS. Over 90%
of people have their MS confirmed To measure your eyes, you’re
this this way. shown patterns on a screen.
Electrodes measure how your
Lumbar puncture brain reacts to what you see. To
During a lumbar puncture (or test your hearing you’ll listen to
‘spinal tap’) a needle is put into clicks through headphones. In
your lower back, into the space another test you’re given tiny
around your spinal cord. A little bit shocks on your skin (it feels
What is MS? 21
like ‘pins and needles’), and the •• Chat to people with MS on our
reactions of your muscles are forum at mssociety.org.uk/
measured. forum
22 What is MS?
The different types of MS
Everyone’s MS is different. A big difference between them is
That said, we can put MS into whether you get ‘relapses’.
two broad types. Relapses
Most people have MS that has Most people diagnosed with
relapses, with inflammation in the MS get relapses to begin with.
brain or spinal cord. This is called A relapse is when, after a period
‘relapsing MS’. There are drugs when your MS was stable, your
that can help with this. immune system attacks your
nerves. This causes inflammation
A smaller number of people to the myelin coating around
have MS that gets steadily worse them. This damage stops signals
over time without relapses or travelling along the nerves
inflammation. This is ‘progressive like they should and causes
MS’ and it’s been much harder to symptoms of MS.
find treatments that help with
this type. For days, weeks or months the
symptoms you had already may
You can further divide MS into get worse or new ones appear.
these main types: Your body does its best to repair
the damaged myelin. Then
•• relapsing remitting MS
symptoms can get better or go
•• primary progressive MS completely. This recovery is called
•• secondary progressive MS ‘remission’. You might be left with
some symptoms, disability or
Sometimes the lines between the damage to the nerves. As time
different types aren’t clear, even to goes on it gets harder for your
MS specialists. body to repair the damage after
each relapse.
24 What is MS?
Doctors used to believe that Relapsing remitting MS
during remission MS wasn’t With this type of MS you have a
causing any harm. We now know pattern of relapses (symptoms
that even when you’re not having getting worse) followed by
a relapse, MS can be damaging recovery (‘remission’). Your
your nerves. disability or symptoms don’t get
worse between relapses but after
Why are relapses important?
each relapse it can end up worse
If your MS has relapses it means
than before. As time goes on your
inflammation is happening
body finds it harder to repair the
in your brain and spinal cord.
damage each relapse brings. So
MS treatments we have at the
your disability or symptoms are
moment can make a difference
likely to get worse, especially if
to this inflammation and the
you don’t start treatment.
relapses that go with it. These
treatments include disease
modifying therapies (DMTs).
Taking one can mean fewer and
less serious relapses, and it could
Disability
What is MS? 25
therapies (DMTs) that can help inflammation, they don’t work
with relapsing MS. against progressive MS.
26 What is MS?
MS to change into secondary symptoms of relapsing MS
progressive MS. Thanks to DMTs but they were overlooked or
this is changing: misdiagnosed.
What is MS? 27
causes goes unnoticed and can “This condition
only be seen on scans. will not define
me any more than
‘Benign’ MS can suddenly become
the colour of my
more active. You only know if your
hair. I want to be
MS is really benign if you can look
described as a
back after 15 years or so and see
husband, a father,
that MS hasn’t caused you a lot of
bright, witty,
problems.
knowledgeable and
kind. That’s all.”
Martin
Treating MS
There’s no cure for MS For some people these drugs can
yet but it can be treated work so well that there are no
in different ways. There signs that their MS is still active at
the moment.
are treatments for
the many symptoms DMTs we have right now only
of MS. These include work against MS that has
medicines, physiotherapy relapses. Happily, it’s hoped
and or alternative or that a drug that also works
for progressive MS, called
complementary therapies.
ocrelizumab, will be available in
Slowing down MS and 2018.
cutting relapses
For more on DMTs check out
The biggest long-term difference
our booklet ‘Disease modifying
people can make to their MS is to
therapies (DMTs) for MS’ and the
take a disease modifying therapy
factsheets for each drug you’ll find
(DMT). They’re called ‘disease
at mssociety.org.uk/dmts
modifying’ because they change
the course of MS, not just tackle Treating relapses
symptoms. Some milder relapses won’t need
any special treatment (just keep
They can:
on taking your DMT if you’re
•• slow down how fast your on one). You can speed up how
disability or symptoms get fast you get over more serious
worse relapses with a short course of
steroids. These are taken as a
•• reduce how many relapses
pill or through a ‘drip’ that goes
you get and make the ones
into a vein. Whether a relapse
you have less serious
What is MS? 29
is treated or not doesn’t make able to get rid of a symptom
any difference to how much totally but can make them easier
permanent disability it could leave to live with.
you with. Rehabilitation after a
relapse can help get you over Physiotherapy can help with
it. This includes physiotherapy, muscle stiffness. Occupational
occupational therapy, advice on therapy might help with
what you eat and support at work something like tremor (shaking
and with help in your home. that you can’t control).
30 What is MS?
Stress cooking and MS, including
Many people with MS say stress vitamins and the special ‘MS diets’
affects how they feel and makes you might hear about.
their MS worse. Lowering your
Exercise
stress levels can definitely
Staying physically active has real
improve your overall health and
health benefits if you have MS.
how you feel. Some studies show
This doesn’t have to mean sport if
a link between MS and stress but
you don’t feel that’s right for you.
others don’t. Some show stress
It could be any activity that suits
over a long time can trigger a
you such as gardening, walking or
relapse.
exercises you do at home.
Our website has a page on
Regular exercise has been shown
stress, anxiety and how to better
to help with some MS symptoms
manage it.
such as fatigue, bladder and
What you eat bowel problems and muscle
A healthy, balanced diet is good stiffness or spasms. It can help
for all of us. Eating healthily is all keep you mobile if you have some
the more important if you have to disability, by making your muscles
cope with a long-term condition stronger or improving your
like MS. posture. It can boost your mood
and keep your memory and
A lot of people with MS take care thinking sharp. This is important
about what they eat. They hope as MS can affect all these.
it will make a difference to their
MS, its symptoms and how many You’ll find information and
relapses they get. Some follow tips in our ‘Exercising with MS’
special ‘MS diets’ but there’s little DVD, our booklet ‘Exercise and
evidence these have an effect. physiotherapy’ and the ‘exercise’
pages on our website.
We have a booklet called ‘Diet
and nutrition’ that looks at food,
What is MS? 31
Who can help with symptoms: ‘Exercise and
symptoms? physiotherapy’, ‘Speech
difficulties’, ‘Fatigue’, ‘Muscle
Lots of different health and social
spasms and stiffness’, ‘Managing
care specialist can help. These
bladder problems’ and ‘Managing
include speech and language
the bowel in MS’. Our website and
therapists, continence advisors
MS Helpline have details of them
(for problems with your bladder
all. Find them and others at:
or bowels), physiotherapists,
psychologists and occupational mssociety.org.uk/ms-resources/
therapists. key-publications
These are just some of the
booklets we have on treating
Pregnancy and MS
MS often affects women at an age when they’re thinking about
having children. You can still do this. MS doesn’t make it harder to
get pregnant. You’re less likely to have relapses while pregnant. But
you’re more likely to have one after you’ve given birth if you don’t
take a DMT. In the long run getting pregnant doesn’t make MS
worse.
If you get pregnant it doesn’t always mean you must stop taking
your MS drugs. You mustn’t take some DMTs during pregnancy but
others you can. Tell your MS specialist if you’re thinking of starting a
family and they’ll advise you.
Read more in our booklet ‘Women’s health’ and in our factsheets for
each DMT.
What is MS? 33
How can the MS Society help?
We support thousands of people Research
with MS and their families, carers Research is seeing great progress
and friends. We have local groups against MS and making a real
across the country offering difference to the lives of those of
support and information. us with MS. We are funding new
Find ones close to you at: research into why MS happens
mssociety.org.uk/near-me and treatments to stop or slow it
down. We’re helping to find better
You can get confidential support
treatments for symptoms, too.
and information from the
We’re also developing services to
freephone MS Helpline on
make people’s lives better. Find
0808 800 8000 or email them
out what we’re funding, the latest
on helpline@mssociety.org.uk
scientific breakthroughs and ways
You can check out our booklets you can help at mssociety.org.uk/
and factsheets covering every research
part of living with MS at:
Get involved!
mssociety.org.uk/ms-resources/
key-publications Why not become a member of the
MS Society? To find out more call
Order them from the MS Helpline our Supporter Care Team on
for free. 0300 500 8084 or visit our
website at mssociety.org.uk
You’ll find lots of people with or
affected by MS on our online
forum, a part of our website.
There’s a section for people
who’ve recently found out they
have MS.
mssociety.org.uk/forum
34 What is MS?
Help us raise vital funds NHS data with the first-hand
www.mssociety.org.uk/ experiences of people with MS, to
fundraising build a picture of what it’s like to
live with MS. Knowing this could
Volunteer transform the development and
mssociety.org.uk/volunteering delivery of research, care and
0300 500 8084 services for people with MS.
What is MS? 35
New words explained
Antibodies – these are made by MS this system goes wrong and
your immune system to kill things it attacks your central nervous
like viruses and bacteria that get system
into your body. If antibodies can
be found in the fluid around your Inflammation – when your
spinal cord it’s a strong sign that immune system reacts to attack
you have MS or damage it sends more blood
and immune cells to the damaged
Central nervous system – your area, making it swollen. When
brain and spinal cord. Nerves inflammation of the brain and
carry messages between the two. spinal cord is left untreated it
These signals control how parts of starts to damage it, leading to MS
your body work symptoms
36 What is MS?
Myelin – a fatty covering that
protects parts of your nerves.
When you have MS myelin is
attacked by mistake by your
immune system. This interrupts
messages that travel along your
nerves and that control parts of
your body, causing the symptoms
of MS
What is MS? 37
Further information
Library MS Helpline
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contact our librarian. and information for anyone
affected by MS, including family,
20 8438 0900
0 friends and carers.
librarian@mssociety.org.uk
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Resources interpreter service.
Our award winning information
resources cover every aspect of 0808 800 8000
living with MS. (closed weekends and bank
holidays)
020 8438 0999 helpline@mssociety.org.uk
shop@mssociety.org.uk
mssociety.org.uk/
publications
About this resource
With thanks to all the people for any errors or omissions. Seek
affected by MS and professionals advice from the sources listed.
who contributed to this booklet,
in particular Alan Izat, Maureen References
Ennis, Audrey Owen and Carmel A list of references is available on
Wilkinson. request, and all cited articles are
available to borrow from the MS
If you have any comments on this Society library (there may be a
information, please send them to: small charge).
resources@mssociety.org.uk or
you can complete our short online Contact the librarian on
survey at surveymonkey.com/s/ 020 8438 0900, or visit
MSresources mssociety.org.uk/library
This resource is
also available in
large print and audio.
MS National Centre
0300 500 8084
info@mssociety.org.uk
supportercare@mssociety.org.uk
Online
mssociety.org.uk
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MS Society Scotland
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© MS Society. September 2016 (a)
This title will be reviewed within three years of publication.