M20.077

Essentials
MS can affect your emotions as well as your body.
Although this has been recognised since MS was firstdescribed in the 19th century, it is only more recently thatwe have begun to understand more about how MS can depression cause changes in mood and feelings.1 There are now many
treatments available to help manage these often upsetting and difficult aspects of MS. Medication, talking therapiesand self-help techniques can all make it easier to cope.
Even so, mood, emotional and behavioural symptoms
of MS – which can include depression – are sometimes
overlooked, not fully acknowledged, or even dismissed
as an understandable emotional reaction to the condition.2
If you experience any changes in mood, emotions or
behaviour, do seek medical advice. Your healthcare team
can provide help and support.
Emotional and behavioural symptoms are different Contents
from ‘cognitive’ symptoms, which affect how your mind 02 Causes of mood changes
processes information, although they can affect each other.
04 Understanding emotional
You can read more about cognitive symptoms in the MS Society publication Memory and thinking.
This booklet contains information about a wide range of symptoms that can affect people with MS. You may not • Stress and anxiety• The emotional impact 11 Emotional and psychological
symptoms• Depression • Mood swings and The causes of mood, emotional and behavioural changes in people with MS are not well understood, and a variety mood changes of factors can contribute to them. These factors fall into two broad categories – those that are directly related to MS, and those that are not directly related to MS. However, it is often difficult to pin down a specific cause for aspecific symptom. It is more likely that a combination offactors is involved. It is impossible to predict who will be affected by these symptoms or how. There is no set ‘MS personality’ and many people with MS do not experience changes in their mood, feelings and behaviour.3
Being diagnosed with MS, coping with, and adapting to the changes and uncertainty it brings, can be veryunsettling. It may lead to a whole array of emotions such as grief, anxiety, guilt, fear, irritation and anger. There is noright or wrong way to react, and reactions to the conditionwill vary greatly from person to person. Your own reactionwill be influenced by how MS affects you, the symptomsyou are experiencing and how you usually cope with whatlife throws at you. The brain controls both conscious and unconscious actionsby sending messages to all parts of the body. Differentparts of the brain control different things, and the frontallobe is responsible for the control of emotions and theiroutward expression. Regardless of your personality, nervedamage in this region of the brain can affect the way youfeel or react, and can cause you to behave in a way thatseems out of character.
your MS. Other conditionscan also be present, which Certain emotional and behavioural characteristics may have always been part of an individual’s personality and may have been obvious before their MS. Also, somepeople, regardless of an MS diagnosis, are moresusceptible to depression and other emotional changes.
It should not be assumed that all health issues – bothemotional and physical – experienced by people with MSare related to MS. There could be other health conditionspresent that bring about changes in mood, behaviour or the way emotions are expressed. A doctor or MS nurse can ensure a medical assessment is completed, otherconditions are not missed, and the most effective treatment is found. Social, financial and domestic circumstances can alsoinfluence emotional health. If this is the case, you may need to make some practical adjustments and seekadditional help or support. Most drugs have potential side effects, and some drugs
commonly used to treat MS and its related symptoms can
cause temporary changes in mood or behaviour in some
people. For example: steroids, used to treat relapses, can
cause hyperactivity or depression – and, a steroid ‘high’
often becomes a ‘low’ when treatment ends.4,5 Modafinil,
used to treat fatigue, can cause anxiety or depression.6
Certain other drugs, such as Baclofen, used for spasticity,
can cause unpleasant hallucinogenic symptoms, agitation
or altered moods if treatment is stopped suddenly.6 For this
reason, when stopping medication some drugs need to be
phased out over a few weeks.
Not everyone will experience these side effects, and manypeople successfully use these drugs to manage MSsymptoms. If however you think you are experiencing sideeffects, consult your doctor who can reassess yourmedication. A diagnosis of MS, the onset of new symptoms or increasing disability, can trigger a wide range of emotions, and it is impossible to describe a ‘typical reaction’. Whilethere are some common emotional experiences, how each individual responds will depend on their character and Life with MS can mean you experience losses, such as the ability to drive, do certain types of work, or take part in certain social activities. The process of grieving for these losses varies between individuals, but often includesperiods of shock, fear and denial, followed by anger and frustration, which gives way to acknowledgement, accommodation and adaptation. This is sometimes referred to as the ‘cycle of grief’, though this term can be misleading as not everyone’s feelings will follow this exact cycle andpeople don’t necessarily experience all of these emotions.
Whatever pattern these feelings follow, they are all a normalreaction to living with MS. And the period of grief isgenerally limited and resolves by itself over time.
However, a period of grief may follow every major loss,
and no one will adapt to MS all at once.7 For example,
you may feel you have adapted to living with MS and have
grieved for the loss of your lifestyle before you had MS.
Then, perhaps years later when new symptoms appear or
disability progresses, you find these feelings of shock, fear,
denial, anger and anxiety return to be worked through again.
You may also find that while you have got used to symptoms
that you have had for a few years, symptoms that appeared
more recently still cause grief in one way or another.
A diagnosis of MS leaves many people overwhelmed and unable to connect to the news or to feelings they have about it. People often say things like ‘It hasn’t really sunk in yet’ or ‘I feel stunned’ or ‘numb’. People may experience similar feelings later in their MS if they areaffected by very different or life-altering symptoms. During this time, it can be difficult to absorb muchinformation about the condition.
It is a common human reaction to keep troubling or frightening issues at arm’s length. Many people delay fully confronting a diagnosis of MS by denying it ishappening – others find it easier to take control by seeking information and help.
In the short-term denial can be positive ‘time-out’, giving
the space needed to adapt, but it can become problematic
if it persists. If symptoms are not acknowledged, it can
become more difficult to make the practical, emotional or
social adjustments that are needed to manage a situation
successfully. This may result in your not being able to live
life to the full, may jeopardise your own health and safety,
and could have a negative impact on others.8 For example,
if you develop a bladder problem – which you deny – you
may go on to develop serious complications, which might
have been avoided had you seen a healthcare professional.
People may also have unrealistic or exaggerated fears aboutMS, and these fears can make it harder to acknowledgeand adapt. Talking about the things that are troubling you,preferably to someone who knows about MS, like an MSnurse or the MS Society helpline, can be reassuring.
Gathering information can also help you to make informeddecisions and communicate effectively with healthcareprofessionals, so together you can establish the best waysof dealing with your particular situation.
The realisation that you are no longer able to do somethingyou once could often leads to anger and frustration.
Although these feelings are normal, they may also be a sign that you are resisting or fighting change. If the changecan be acknowledged, and you begin to adjust to the newsituation, you may find the anger goes away. However, itcan take time, often a couple of years, to adapt and forthese feelings to go completely.
• Acknowledgement, accommodation, adaptation Initially it can be hard to adapt to a condition that is asunpredictable as MS, may progress over time and carries a considerable risk of disability. Many people find the ideaof ‘accepting’ or ‘embracing’ their MS difficult, but noticethat, with time, they can acknowledge it and learn to livewith it. This process may be emotionally difficult, but overtime you will get to know your own MS and the way yourbody reacts to it. You will learn new ways of living with yoursymptoms and with the changes MS brings. People often find there is a particularly difficult timebetween the appearance of a new symptom and finding a way of managing it, during which they become veryaware of the things they can no longer do. Once a way of managing the symptom is found, people often report that they feel more comfortable with their new situation. Sometimes people with MS find they feel guilty, as if theyhave let their family and friends down or are somehowresponsible for developing the condition. They may alsofeel guilty if they think they have burdened partners orchildren with a changing lifestyle or reduced income. In addition, family members may blame the person with MS for difficulties that the condition has created, such asfinancial or relationship problems. This can make feelings of guilt worse – both for the person with MS and theirfamily. It can help if everyone in the family understands MS, so they can identify when it is the MS, and notsomething else, that has caused the problem. Stress is defined as anything that disturbs a person’s
emotional well-being, by creating tensions or strains.
As MS is unpredictable and can bring about major
physical, emotional, social and economic changes, it
is understandable that living with the condition can be
stressful. However, continued exposure to stress can lead
to further emotional symptoms such as anxiety, and it is
known that this is more common amongst people with MS
than the general population.9,10 This anxiety can, in turn,
cause physical symptoms such as headaches, palpitations,
over-breathing (hyperventilation), increased blood pressure
and muscle tension. Sometimes these physical symptoms
may take the form of ‘panic attacks’.
The National Institute for Clinical Excellence (NICE)
Guideline for MS, which sets out good practice for MS
related NHS healthcare in England and Wales, recommends
that where a person is experiencing anxiety they should be
offered specialist help.11 It says that for those with serious
anxiety, psychologically based treatment should be given
and, where appropriate, medication should be used.
Research into the possible relationships between stress,
the onset of MS and relapses has produced conflicting
results. But there is currently little evidence to suggest
that stress causes MS, relapses or an increase in
relapse rate.10,12,13
Stress is, however, a reality of life regardless of whether
you have MS or not. Sometimes families try to avoid
stressing the person with MS so much that they cause
further stress, anxiety and guilt. This does not help anyone.
In a life led to the full, stress cannot be avoided. The best
approach is to learn how to manage and cope with stress.14
Talking therapies can help with this.
Self-management programmes such as those run by
the MS Society and NHS Expert Patient Programme,
can be very useful in helping you to adapt to life with MS.
These can help you manage your symptoms and emotions,
as well as helping you to develop the skills needed to
continue with day-to-day activities. The NICE Guideline
states that within six months of diagnosis, people with
MS should be offered the chance to participate in such
a programme.11 For more information, ask your GP or
contact the MS Society.
Talking therapies and support groups can also help.
The NICE Guideline notes that people may benefit from
emotional support and that, where possible, healthcare
teams should provide this support or refer someone to
a specialist.11
The MS Society Helpline also offers information and support to anyone with MS, their families, friends andcarers. Helpline workers can also put you in touch with your local MS Society branch and send you furtherinformation about MS. A family member being diagnosed with MS is a bit like an uninvited guest coming to stay and not leaving again.
Everyone has to deal with it and it may present an ongoingchallenge to the family’s equilibrium. Family members may also experience feelings of grief and loss as new symptoms appear or disability progresses. This grief often coincides with the need to reconsider family roles and dynamics so symptoms or disability can be accommodated. For example, a child may be feeling the loss of playing football with their dad, whilst also having to consider how they can help care for a parent who is now less mobile. This can be emotionally difficult for everyone involved. How each family member deals with this will vary accordingto their own personality, coping style, how they see MS andthe direct effect it has on their own lives. This means that a family’s efforts to deal with MS is often not coherent.
Instead, the ‘family’s reaction’ will be a combination of thevaried, sometimes conflicting, coping mechanisms of thevarious individuals.
Open communication is the key to understandingeveryone’s emotional needs, but talking about MS within a family can be difficult. Some people may not want to talkabout painful emotions, feelings, questions or concerns.
Others find it easier to cope with the physical aspects ofMS, but more difficult to discuss the impact of symptomswhich they cannot see and find hard to understand – suchas those that affect mood, personality and behaviour.
If a family is finding it difficult to communicate, familytherapy – a talking therapy done as a family group – mayhelp. Alternatively, individual members of a family may find personal counselling or other talking therapies useful. It can also be helpful to learn about the condition, perhapsthrough learning events where families can meet otherpeople and share experience, or by joining a wider support network. Cognitive behaviour therapy and other talking therapies can help you overcome depression and other emotional difficulties by providing an opportunity to talk in a way
that helps you understand yourself better.15,16 Using this
understanding, you may be able to work out ways of taking
positive and constructive steps towards improving the way you feel. You may also find you deal with situations in new ways that make them seem less stressful or difficult.
that make them seem less stressful or difficult.’ Talking therapies can also help all those affected by MS to feel less alone when dealing with distressing symptoms. Types of talking therapies
Counselling: This allows you to talk about the
difficulties or troubles you are experiencing in an
environment that is confidential and without interruption.
The counsellor should respect your viewpoint while
helping you deal with specific problems, cope with
crises, improve your relationships and develop better
ways of living. Counselling can help you to gain insight
into your feelings and behaviour, and, if necessary, help
you to change your behaviour.
Psychotherapy: This is also a talking therapy and one
that tries to help you understand why you feel the way
you do, and what lies behind your responses to other
people and things that happen to you. It goes deeper
than counselling and you may look closely at your past,
particularly your childhood, and your relationships with
significant people in your life. Psychotherapy can be
helpful with less severe depression. It can require a
long-term commitment.
Cognitive behaviour therapy: This talking therapy
focuses on specific, practical problem-solving
techniques. It aims to help you to reassess situations
that you may be misinterpreting. A small research study
found cognitive behaviour therapy significantly improved
mood for people with MS.4 It does not always suit people
with cognitive difficulties (problems with memory or
thinking), nor does it suit people who are severely
depressed or suicidal.
Self-help groups: These groups, also known as peer
support groups, are usually for people who want to
overcome a shared problem. They allow people to share
experience, provide mutual support, and learn from and
encourage each other. There are many self-help groups
run by and for people with MS. Such groups can be
valuable when adapting to life with MS, and can provide
day-to-day support. Professional help is, however,
recommended when dealing with clinical depression,
behavioural and emotional symptoms, difficult family
adjustment or prolonged grief.
You can find out more about these different types of talking therapy from the mental health charity Mind (see page 22) or ask your doctor.
If you feel you would benefit from counselling,psychotherapy, or cognitive behaviour therapy, consult your GP and request a referral to a specialist. Unfortunately,availability of such therapies on the NHS is limited, andvaries from region to region. If you are referred, there maybe a waiting list and you may find you are given very fewappointments (generally six to twelve sessions). If your GP is unable to refer you they may recommend a privatecounsellor or voluntary organisation. Various organisations can recommend accreditedpractitioners (see page 21). Typically, this costs around £40-50 for an hour long session, though some will chargemore and others less. Access to talking therapies on the NHS should improve.
The 2005 National Service Framework for Long-term
Conditions (NSF) – the government’s ten year plan that
sets requirements for health and social care in England –
recognises that people with MS can benefit from talking
therapies and psychological support. The NSF also states
that those living with long-term conditions should have
access to psychologists as part of a multi-disciplinary
team.17
Many MS Society local branches have regular supportgroup meetings. Each branch also has a fully trainedwelfare officer who can provide support and offer guidanceabout other local services available. Counselling is alsoavailable from some regional MS Therapy Centres (seepage 22). Many people may loosely use the word ‘depression’ to describe short periods of feeling down or low, but clinical depression is something much more severe, which preventsyou from functioning normally and continues for more than a couple of weeks. Approximately 50 per cent of people
with MS experience this more serious depression at some
point.2,4,18,19
You are considered clinically depressed if at least five of the following symptoms are present for at least two weeks.4,18,20,21
to consult a healthcareprofessional as soon as Depressed mood, feelings of hopelessness Significantly reduced interest or pleasure in most activities Changes in appetite and noticeable weight loss or gain Insomnia (inability to sleep) or hypersomnia (excessive sleeping) Feelings of excessive restlessness or sluggishness Feelings of worthlessness, excessive or inappropriate guilt Reduced ability to think or concentrate, or indecisiveness These symptoms would need to be severe enough to upseta daily routine, interfere with relationships, or severelyimpair work. Healthcare professionals will also need toestablish that the depression is not linked to another causesuch as alcohol, drugs, medication or bereavement. Depression is often misunderstood, and as a result adiagnosis may not be sought out by those affected, leavingthis easily managed symptom untreated. If you think youmay be depressed, it is important to consult a healthcareprofessional as soon as possible. Depression is somethingyou cannot prevent, and it should not be consideredembarrassing or shameful. Some symptoms of depression are also symptoms of
MS, and it can be difficult to identify what is causing
them.22 For example, fatigue can be related to depression,
or may be a direct result of MS, or a combination of the
two. A specialist healthcare professional can ensure that
all possible causes of symptoms are investigated fully
and appropriate treatment provided.
• Disability, progression of MS and depression In some conditions there can be a link between being
disabled and having depression, but in MS, depression
does not seem to be related to how disabled a person
is.23,24 For example, someone with little physical disability
may experience severe depression and vice versa.
There is also no clear link between how long someone
has had MS and the risk of being depressed.24,4 For
example, someone who is recently diagnosed can be as
depressed as someone who has had MS for many years.
One small study showed that depression rates are
greater amongst people with relapsing remitting MS
than those with primary progressive MS. It is thought
this may be because primary progressive MS is generally
diagnosed later in life when personal and social networks
are more developed, and because people with primary
progressive MS do not live with the uncertainty of
unpredictable relapses.25
Research has also been carried out to see if depression can
be directly linked to MS-related damage in particular areas
of the brain. Some recent studies have suggested that there
is a link, though they also suggest that MS-related nerve
damage is only part of the equation.5,26 Other factors,
including psychological reactions to living with MS, side
effects of medication, individual situations and social
circumstances are also thought to play a part.
Treatment for depression
Where depression is suspected healthcare teams should
complete an assessment, and draw up a list of factors
that may be contributing to it, for example, pain or
social isolation. An appropriate depression management
strategy should then be developed, and further
assessment, treatment and support should be given
to ease problems.11
Antidepressants
Various antidepressants are used to treat MS-related
depression. Most common are selective serotonin
reuptake inhibitors (SSRIs) and research trials have shown
good results with SSRIs such as Fluoxetine (Prozac),
and Sertraline (Lustral).22 Tricyclic antidepressants such
as Amitriptyline (Triptafen), Desipramine (Norpramin,
Pertofrane), and Imipramine (Tofranil) may also be used,
though these are less common today as they tend to
have more side effects which can make other MS
symptoms feel worse, for example by causing drowsiness,
constipation or difficulty passing urine.2 If you are taking
any of these and think you are experiencing side effects,
ask your GP or MS nurse if you can try a different
treatment.
Be aware that antidepressants can take six to eight weeks to reach their full effect.
Talking therapies
Talking therapies including psychotherapy and cognitive
behaviour therapy can help you develop the ‘coping skills’
needed to deal with depression-related difficulties.9 For
example, such therapy can help you to be assertive
to get what you need, rather than giving up or getting
excessively angry. For more information on talking
therapies see page 9.
Research indicates that the most effective treatment for
depression in MS is a combination of cognitive behaviour
therapy or psychotherapy and drug treatment.2,5
Complementary therapies
St John’s Wort
Some people like to try complementary and alternative
therapies. Research has suggested St John’s Wort
(Hypericum extract) might work as well as some
antidepressants in mild depression.27,4 However, it is not an
effective treatment for people with more severe depression.
It is not known how St John’s Wort works, and the quality
and strength of preparations vary significantly. As with all
medicine it can have side effects. St John’s Wort should
not be taken with other antidepressants, and it is known
to react badly with some other drugs. For example, it can
make the contraceptive pill less effective.
You should always consult your doctor before trying any new treatment and before making any changes to your medication.
While most people cope well with MS, there are some who
lose the desire to live. Research to date does not indicate
that the level of disability is linked to the risk of suicide;
instead, it appears to be related to depression and social
isolation.5,28 Overall, the frequency of people with MS
attempting suicide is approximately seven times higher
than it is for the general population.22 This highlights the
importance of openly talking about MS-related depression
and emotional difficulties with your doctor, MS nurse or
other member of your healthcare team, and ensuring that
it is addressed promptly and appropriately.
The Samaritans operates a 24-hour telephone helplineoffering emotional support for people who are experiencingfeelings of distress or despair (see page 23). Bi-polar affective disorder, sometimes known as ‘manicdepression’, is much less common than clinical depressionin people with MS. It is a mood disorder where moods canswing from extremes – mania (very very high) to depression(very very low). Depressive symptoms are the same as those in depression, outlined above. Manic symptoms area combination of over-activity, with a decreased need for sleep and racing thoughts, elevated or euphoric mood, and ‘grandiose’ thought content. For some people, euphoria may be replaced by irritability, and grandiose thoughts by beliefs of being persecuted. Bi-polar affective disorder affects around one per cent of
the general population, but is perhaps twice this among
people with MS. Again, the reasons are unclear.21
Research has shown that people with MS experiencing bi-
polar disorder react well to mood stabilisers such as Lithium
and Valproic Acid.3,22 More extreme ‘florid’ symptoms, lasting
seven days or more, may require hospitalisation and further
drug treatment. When coming to terms with this symptom,
talking therapies can help change the way you feel about it.
Psychosis is where people are unable to distinguish
between what is real and what is imaginary. This is very
rare in MS, as it is in the rest of the population.22 Treatment
with antipsychotic drugs may help.18 But if someone has
psychosis and becomes violent or threatening to others,
the family may become unable to care for them, and it
may be necessary to arrange specialist residential care.
Some people living with MS describe mood swings, wheremoods switch rapidly from one state to another. Othersdescribe emotional upheavals, like bouts of anger orheightened sensitivity, where they become very emotionalvery easily and seem unable to stop. These symptoms affect only a small minority of people with MS. Unlike depression or bi-polar disorder, which are common inother health conditions and have been studied for decades,these much rarer emotional symptoms have been littleresearched. As a result, there are few methods available tohelp healthcare professionals assess them, and they areharder to diagnose. In recent years, researchers have begun to define specific
categories for mood swings, emotionalism and ‘affective
disorders’ that people with MS may experience.3,24 These
are described on pages 16 to 19. Even so, you may
experience changes that do not neatly fit into these
categories. Instead, you may recognise characteristics
from one or more category, with certain aspects of some
being stronger than others.
In the NICE Guideline for MS, all these symptoms are
grouped under the term ‘emotionalism’, highlighting the
difficulty of trying to assign individuals to a specific box.11
It advises that individuals experiencing emotionalism should
be offered full assessment of their emotional state by a
specialist. This is particularly important as specialists can
identify other potential causes of the problem such as other
health conditions or side effects of medication. The NICE Guideline also states that if emotionalism is sufficient to be causing a person or their family concern, appropriate medication should be offered. Where someone is unwilling, or unable, to take medication, or is not responsive to them, a suitable expert should offer advice on how they might adapt their behaviour to better manage these symptoms.11
Emotional lability describes a state where emotions and the
way they are expressed can no longer be controlled as they
once were. Instead, people experience rapid ups and downs
in their feelings.29 People may find their emotions are easily
aroused, freely expressed and tend to change quickly and
spontaneously. For example, you may easily burst into tears
or suddenly get very angry over something, in a way that
seems exaggerated or out of proportion. Whether these
outbursts involve crying, anger, laughter or anything else,
they are usually brought on by a specific event.
Emotional lability is often referred to as ‘moodiness’ or ‘mood swings’. Emotional lability is however more severe and is thought to be caused by nerve damage in the brain.
It can be difficult to separate moodiness that may affect a
person under a great deal of stress from emotional lability.4
It is therefore important to seek advice of a healthcare
professional to ensure appropriate diagnosis and treatment
is given. A diagnosis can also help family and friends
develop appropriate coping strategies.
Mood-stabilising drugs and antidepressants such as
Fluoxetine (Prozac), can be an effective treatment for
emotional lability.30 Others find talking therapies are
beneficial. Alternatively, a combination of both these
approaches may work well.
Uncontrollable laughing or crying is also known as ‘affective
release’ and ‘pseudobulbar affect’. This is different from
emotional lability and probably affects about 10 per cent
of people with MS.2,9,18 It is thought to result from MS-
related damage to nerves in the brain that control the
formation, modification and expression of emotions (the
limbic system).31
People with this symptom can find themselves laughingwhen they are sad, or crying when they are happy. Theseinvoluntary outbursts are completely independent of theirstate of mind at the time, are unrelated to events going on around them, and cannot be controlled. This can beconfusing, embarrassing and upsetting for all those affected,including family and carers. It can also mean that people do not recognise when someone with MS is really troubled(because they are laughing), and that real problems are not taken seriously. There are mood stabilising drugs available that can help,
such as Amitriptyline, Levodopa, Desipramine, and one
small study showed Fluoxetine (Prozac) to be particularly
effective.2,32,33 For some people, symptoms may disappear
completely with the right treatment.
Emotional crescendo, sometimes referred to as increasedsensitivity, lies somewhere between emotional lability anduncontrolled laughing and crying. With this symptom, peoplefind that relatively unimportant or trivial issues can easily setoff a very emotional response that seems uncontrollable andquickly reaches a ‘crescendo’. Unlike uncontrolled laughingand crying, the outward expression of emotions does reflecthow the person is feeling. This symptom can cause problems in relationships, as
attempts to discuss and resolve even minor issues can
quickly degenerate into tears, shouting matches and
alienation. Again, it is not known what causes this symptom,
and it most likely to be a combination of factors including
nerve damage, stress and psychological reaction to MS.4,34
Treatment is similar to that for emotional lability and
uncontrolled laughing and crying.
Euphoria is characterised by persistently cheerful mood,
particularly at times of difficulty. People may seem strangely
unconcerned about their ongoing physical deterioration, and
may have a sense of optimism that appears out of place,
given their situation.2 In some people, both their mood and
the way they express their feelings is euphoric. In others,
their outward expression of optimism fails to give the true
impression of their inner feelings of despair.
Euphoria is a different ‘high’ to the mania that is seen
in people with bi-polar disorder.3 It is a fixed rather than
fluctuating state, and people with euphoria do not
experience a flurry of new ideas and activities.
It is thought that euphoria affects about 10 per cent of
people with MS, and that it is caused by nerve damage
in the brain.4,17,31 Euphoria is more likely to affect those
in more advanced stages of MS or those with significant
cognitive problems.10
While some people see euphoria as a ‘merciful symptom’that prevents someone from being sad or unhappy, it is veryimportant that it is recognised by those caring for a personwith MS. Many problems may arise if euphoria is overlookedand those affected fail to get the necessary support. Forexample, if a person with euphoria does not acknowledgethe symptoms they are experiencing, they may not receiveappropriate care. Unfortunately, there is no known treatment for euphoria.2,18
However, explaining the condition to family members, friends
and carers can enhance their understanding, and make
empathy and support that much easier.
There are also various behavioural symptoms associated with MS that are very rare and little researched. These symptoms overlap with cognitive difficulties that can cause
problems with the way thoughts are processed,
concentration, or the way plans are made.4
Disinhibition is one of the rarest behavioural symptoms
of MS and only a very small percentage of people are
affected.4,35 It is linked to MS-related damage in the brain.36
People experiencing disinhibition lose control over their
impulses, leading to inappropriate behaviour and a loss
of their sense of social rules. They may have little or no
awareness of others’ feelings regarding their actions.
For example, someone may make a hurtful or inappropriate
comment, break into a rage, or behave in a sexually
disinhibited manner – all of which they would have
considered outrageous previously. It is important to
recognise that people experiencing this symptom cannot
control their behaviour.
Aggression or sexually inappropriate language or behaviour
may be controlled with mood-stabilising drugs.4 In extreme
cases, hospitalisation may be necessary for people to
receive a more vigorous drug treatment. However, the
need for this is extremely rare.
Disinhibition can leave family members, carers and friends
feeling shocked and distraught. One small study has shown
that cognitive behaviour therapy can help people with MS
and their family cope with this difficult symptom.37 Family
therapy and other talking therapies may also help.
In certain situations, some people are unable to understand
what is happening to or around them. Their judgement of
safety may not be as good as it was, or they may have no
insight into the way their behaviour affects others. Again,
this only affects a small percentage of people with MS and
may be linked to nerve damage in the brain.35
This lack of insight can lead to problems, and family, friendsor professionals may have to help the person affected tounderstand the situation better. Unfortunately, stepping incan be difficult – this is not because the person with MSdoes not want to understand, but because they cannot.
Conflicts can arise, for instance, over driving a car or amotorised wheelchair if it is obvious to other people that the person with MS is not safe on the road.
All this can be very distressing for family carers.35 Family
therapy and other talking therapies can help families to
cope.
Initiating actions, for example, getting dressed, doinghousework and getting involved in social or leisure activities,is controlled by a part of the brain called the frontal lobe. If someone has extensive nerve damage in this area, theymay experience a lack of initiative. They may be fine to carryon doing something once they have begun, but unable totake the first steps towards doing it alone. This lack of initiative is generally considered a cognitiveproblem rather than an emotional one. However, as apathyand a lack of motivation can also be a symptom ofdepression, this symptom is sometimes misunderstood. It can help if family members understand the problem, as this will help prevent feelings of frustration and thoughtsthat the person is just being lazy, or is ‘always expectingsomeone else to do it’. Discussing the situation with aprofessional who knows about such problems (such as apsychologist or occupational therapist) can also help familiesand carers recognise what the person can and cannot do.
This can lead to new ways of handling situations and canreduce some of the frustration involved.
The MS Society has publications on a wide variety of
topics, including information for people just diagnosed,
on types of MS, managing relapses, and social services.
For a publications list and order form visit the website
www.mssociety.org.uk or write to MS Society Publications,
PO Box 142, Bedford MK42 0FA. Please give your name
and address details clearly, including postcode.
Keep up to date with all news relating to MS by checking
the MS Society website www.mssociety.org.uk and the
MS Society’s magazine for members, MS Matters. Details
about MS Matters are on the web and in the MS Society’s
publications list.
The freephone MS Helpline offers information and support
to anyone with MS, their families, friends and carers. Trained
helpline staff can answer questions about MS and related
personal issues. All calls are treated in complete confidence.
Freephone 0808 800 8000 (weekdays, 9am-9pm)
Information and advice on MS is available in other
languages. People affected by MS can now discuss
their concerns in 150 different languages by speaking
to a helpline worker on freephone 0808 800 8000 via
an interpreter.
Memory and thinking, 02 in MS Essentials series publishedby MS Society, UK.
Anxiety Care
Cardinal Heenan Centre326 High RoadIlford Essex IG1 1QPTelephone 020 8478 3400 British Association for Behavioural and Cognitive
Psychotherapies (BABCP)
Supplies details of accredited cognitive and behaviouralpsychotherapists, full directory available online. The Globe CentrePO Box 9Accrington BB5 0XBTelephone 01254 875277www.babcp.com British Association for Counselling & Psychotherapy
(BACP)
Supplies details of accredited counsellors, psychologists and therapists. BACP House35-37 Albert StRugby CV21 2SGTelephone 0870 443 5252 www.bacp.co.uk Depression Alliance
A group that provides support and understanding for people affected by depression.
35 Westminster Bridge RoadLondon SE1 7JBTelephone 020 7633 0557www.depressionalliance.org The Manic Depression Fellowship (MDF)
An organisation that works to enable people affected by manic depression to take control of their lives. Castle Works21 St Georges RoadLondon SE1 6ESTelephone 020 7793 2600www.mdf.org.uk Mind works to create a better life for everyone experiencingmental distress. They can offer advice and have a series ofpublications available. 15-19 Broadway London E15 4BQEmail: contact@mind.org.ukInformation line 0845 766 0163 (Monday-Friday, 9.15am-5.15pm)www.mind.org.uk MS Therapy Centres
A national network of over 50 centres offering support and various non-drug therapies to people affected by MS including counselling.
MS Therapy CentresBradbury House155 Barkers LaneBedford MK41 9RXTelephone 01234 325781www.ms-selfhelp.org Provides a helpline and step-by-step programmes to support those dealing with anxiety.
93 Brands Farm WayTelfordShropshire TF3 2JQHelpline 0808 808 0545 (everyday, 10am-10pm)www.nopanic.org.uk Offers advice, relationship counselling, sex therapy,workshops, mediation, consultations and support face to face, by phone and through the website.
Samaritans
24 hour telephone helpline offering emotional support forpeople who are experiencing feelings of distress or despair. The Upper MillKingston RoadEwellSurrey KT17 2AFHelpline 08457 909090 (everyday, 24 hours)www.samaritans.org United Kingdom Council for Psychotherapy (UKCP)
Umbrella organisation for psychotherapy in the UK. Regional lists of psychotherapists available. 167-169 Great Portland StreetLondon W1W 5PFTelephone 020 7436 3002www.psychotherapy.org.uk Charcot, J M (1877), Lectures on the diseases of thenervous system, delivered at La Salpetriere, London, New Sydenham Society, 194-195 Minden, S (1999), Treatment of mood and affectivedisorders, Multiple Sclerosis Therapeutics, edited by K Rudick and D Goodkin, Dunitz Mahler, M E (1992), Behavioural manifestations associatedwith multiple sclerosis, The interface of psychiatry andneurology, 15(2), 427-438 LaRocca, N (2000), Cognitive and emotional disorders, Multiple Sclerosis: Diagnosis, Medical Management, andRehabilitation; Editors: J S Burks, K P Johnson DemosMedical Publishing, New York Duncan, C (ed.) (2005), Monthly Index of MedicalSpecialities, Haymarket Medical Publications, London Goldman Consensus Group (2005), The GoldmandConsensus statement on depression in multiple sclerosis,Multiple Sclerosis, 11, 328-337 Minden, S L (1992), Psychotherapy for people with MS,Neuropsychiatric Practice and Opinion, 4(2) Bennett, F (2002), Psychosocial issues and interventions,Multiple Sclerosis: Psychosocial and VocationalInterventions; Editors: R T Fraser, D C Clemmons, F Bennett; Demos Medical Publishing Mohr, D C and Cox, D (2001), Multiple Sclerosis: EmpiricalLiterature for the Clinical Health Psychologist, Journal ofClinical Psychology, 57(4) 479-499 10 Rabins PV et al. (1986) Structural brain correlates of
emotional disorder in Multiple Sclerosis, Brain, 109, 585-597 11 Multiple Sclerosis: Management of multiple sclerosis
in primary and secondary care (2003), NICE ClinicalGuidelines, Guideline 8; National Institute for Clinical Excellence, London 12 Goodin, D S et al. (1999), The relationship of MS to
physical trauma and psychological stress, Neurology, 52 13 Mohr, D C et al. (2004), Association between stressful
life events and exacerbation in multiple sclerosis: a meta-analysis, British Medical Journal, 328, 731 14 Emotional aspects (2003), Source Book, US National
Gloaguen, V et al. (1998), A meta-analysis of the effects of cognitive therapy in depressed patients, Journal ofAffective Disorders, 49, 59-72 Bower, P et al. (2003), The clinical effectiveness ofcounselling in primary care: a systematic review and meta-analysis, Psychological Medicine, 33, 203-215 The National Service Framework for Long-termConditions, (2005), Department of Health, London Miller, A E et al. (2003), Multiple Sclerosis in Clinical Practice, Martin Dunitz Taylor & Francis Group, London and New York Whitham, R H (1994), Cognitive and emotional disordersin Multiple Sclerosis, Multiple Sclerosis: Current Status of Research and Treatment, Editors: R Herndon, F Seil;Demos Medical Publishing, New York Feinstein, A (1999), The clinical neuropsychiatry of Multiple Sclerosis, Cambridge University Press Samuel, L and Cavallo, P (2004), Emotional Issues,Multiple Sclerosis in Clinical Practice, Editors: S van derNoort, N Holland; Demos Medical Publishing, New York Feinstein, A (2004), The neuropsychiatry of multiplesclerosis, Canadian Journal of Psychiatry, 49(3), 157-163 Haase, C G et al. (2004), Cognitive, but not mooddysfunction develops in multiple sclerosis during 7 yearsfollow up, European Neurology, 52(2), 92-95 Minden, S L (2000), Mood disorder in Multiple Sclerosis:diagnosis and treatment, Journal of Neurovirology,6(2), S160-167 Zabad, R K et al. (2005), the association of depressionwith disease course in multiple sclerosis, Neurology,64, 359-360 Feinstein, A (2004), Structural brain abnormalities inmultiple sclerosis patients with major depression,Neurology, 62, 586-590 Szegedi, A et al. (2005), Acute treatment of moderate to severe depression with hypericum extract WS 5570 (St John’s Wort): randomised controlled double blind non-inferiority trial versus paroxetine, British MedicalJournal, 330, 503-506 Samuel, L and Cavallo, P (2004), Emotional Issues of thePerson with MS, National MS Society, Clinical Bulletin,New York Burgess, M (2002), Multiple Sclerosis: theory and practice for nurses, Whurr Publishers, London Iannaccone, S and Ferini-Strambi, L (1996),Pharmacologic Treatment of Emotional Lability, ClinicalNeuropharmacology, 19(6), 532-535 Meyerson, R A et al. (1997), Mood disorders secondary to demyelinating and movement disorders, Seminars in Clinical Neuropsychiatry, 2(4), 252-264 Glenn, M et al. (1992), Fluoxetine improves emotionalincontinence, Brain Injury, 6(3), 267-270 Minden, S (2004), Pseudolbulbar Affect (UncontrolledLaughing and/or Crying), National MS Society, ClinicalBulletin, New York LaRocca, N and Kalb, R C (2002), Psychosocial Issues in Multiple Sclerosis, Comprehensive Nursing Care inMultiple Sclerosis, Editors: Halper J and Holland N J,Demos Medical Publishing, New York Fishmanm, I et al. (2004), Construct validity and frequency of Euphoria Sclerotica in Multiple Sclerosis,Journal of Neuropsychiatry and Clinical Neurosciences,16(3), 350-356 Benedict, R H B et al. (2004), Correlating brain atrophywith cognitive dysfunction, mood disturbances, andpersonality disorder in Multiple Sclerosis, Journal ofNeuroimaging, 14(3), 36s-45s Benedict, R H B et al. (2000), Neuropsychologicalcounselling improves social behaviour in cognitively-impaired Multiple Sclerosis patients, Multiple Sclerosis,6, 391-396 Disclaimer: We have made every effort to ensure that theinformation in this publication is correct. We do not acceptliability for any errors or omissions. The law and governmentregulations may change. Be sure to seek local advice fromthe sources listed. Suggestions for improvement in future editions arewelcomed. Please send them to infoteam@mssociety.org.uk.
Based on work by the Rehabilitation in Multiple Sclerosis(RIMS) Psychology and Neuropsychology Special InterestGroup including: Päivi Hämäläinen (Finland), Agnete Jönsson(Denmark), Roberta Litta (Italy), Patricia Maguet (Spain),Bente Österberg (Denmark), Michelle Pirard (Belgium), Sally Rigby (UK), Julia Segal (UK), Liina Sema (Estonia),Peter Thomson (UK), Rudi Vermote (Belgium), Luc Vleugels(Belgium).
With thanks to: Megan Burgess, Professor Anthony Feinstein,Dr Nicholas LaRocca, Dr Randolph Schiffer, Julia Segal.
Multiple sclerosis is the most common disabling neurologicaldisorder among young adults in the UK and around 85,000people in Britain have MS. MS is the result of damage tomyelin – a protective sheath surrounding nerve fibres of thecentral nervous system. When myelin is damaged, thisinterferes with messages between the brain and other parts of the body. For some people, MS is characterised by periods of relapseand remission while for others it has a progressive pattern.
For everyone, it makes life unpredictable. The MS Society is the UK’s largest charity dedicated tosupporting everyone whose life is touched by MS. It providesrespite care, a freephone MS Helpline, grants for homeadaptations and mobility aids, education and training,specialist MS nurses and a wide range of information. Local branches cater for people of all ages and interests and are run by people with direct experience of MS. The MS Society also funds over 55 vital MS research projects in the UK. You can help the work of the MS Society by: • becoming a member• making a donation• offering your time as a volunteer MS National Centre372 Edgware RdLondon NW2 6NDTelephone 020 8438 0700 MS Society, ScotlandRatho Park, 88 Glasgow Road Ratho StationNewbridge EH28 8PPTelephone 0131 335 4050 MS Society, Northern Ireland34 Annadale AvenueBelfast BT7 3JJTelephone 028 9080 2802 National MS HelplineFreephone 0808 800 8000

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