Published by MS Australiawww.msaustralia.org.au

ISBN 0-9578229-0-1Revised 7th editionJanuary 2005Updated February 2010

© MS Australia 2005ACN 008 515 508

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Whom does MS affect? 3

What is MS? 4

Why does MS have an impact on the human body? 5

How does MS express itself? 5

Why does MS occur? 7

How do you know you’ve got MS? 7

Tests to aid diagnosis 9

Undergoing an MRI examination 10

Myths and misinformation 11

A detailed look at what happens in MS 13

The anatomy of MS 13

The pathology of MS 14

The outcome of MS 15

What happens to people with MS? 15

The patterns of MS 16

The primary changes of MS 19

The physical changes 19

The psychological aspects 21

The medical management of MS 24

The medical treatment of MS 24

Social/Emotional and family issues 27

An overview of current reseach into MS 30

Drug trials 33

Meeting the needs of people with MS and their families 34

Glossary of terms 37

Useful resources 42

MS Society contact details inside back cover

CONTENTS

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• Multiple sclerosis (MS) is the most common chronic neurological disease affecting young Australians.

• The first onset is usually between the ages of 20 and 50.

• It affects more women than men, in a ratio of about 3:1.

• Caucasians are affected more than any other racial group.

• MS is more common in cooler climates: the patterns of MS that occur around the world reveal that the further a population is from the equator, the higher is the incidence of MS within that population.

• It has an apparent genetic linkage. Between 10 and 20 per cent of people with MS also have a relative with the disease.

WHOM DOES MS AFFECT?

MS is a puzzle that has perplexed medical science since it was first described by the French neurologist Charcot in 1868.

The disease affects the central nervous system (CNS) and can, to varying degrees, interfere with the transmission of nerve impulses throughout the brain, spinal cord and optic nerves.

Since identification, MS has been the subject of intense, world-wide research but still its cause and cure remain elusive.

A simple explanation is conveyed by the term itself. Sclerosis is a Greek word meaning “hardened tissue or scars” and multiple means many.

Recurring episodes of MS can cause many scars to appear in the CNS as a result of the breakdown of the myelin, the insulating material that covers the nerve fibres.

This can result in impairment of motor, sensory and cognitive functions to a greater or lesser extent.But multiple describes other aspects of what is often a frustratingly unpredictable disease. Episodes can occur at varying time intervals affecting different areas of the CNS. There is no one symptom that indicates the presence of MS. No single test can establish an accurate diagnosis.It can be benign - in rare cases apparently disappearing altogether after one or two episodes. Or it can progress steadily over many years, bringing about a slow deterioration in an individual’s capabilities.Although we do not yet understand why some people are susceptible and others are not, we do know that an estimated 16,000 Australians have MS.

WHAT IS MS?

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Courtesy Discover Magazine © 1985.

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MS behaves as an autoimmune disease. Autoimmune diseases occur when the body misrecognises some of its own tissue as foreign and attacks that tissue, causing damage.

In MS, for some reason which medical science cannot yet fully explain, the body misrecognises the myelin sheath (which insulates the nerve fibres of the

CNS) as “foreign” and sets about destroying the sheath as if it were an invading pathogen such as bacteria, virus or a splinter.

Other autoimmune diseases include rheumatoid arthritis, scleroderma and certain types of thyroid diseases.

WHY DOES MS HAVE AN IMPACT ON THE HUMAN BODY?

MS can be experienced in a wide variety of ways.

It can manifest as subtle, subjective sensory changes, feelings of fatigue, pins and needles, numbness or slight blurring of vision.

Or it can become quite observably disabling, affecting mobility and muscle coordination and impairing either a few or several functions simultaneously - bladder control, eyesight, speech, balance, concentration and memory.

No two people will have the same set of symptoms and any one person might experience different symptoms at different times.

Again, the most consistent characteristic of MS is its unpredictability. Even the course of the disease has different expressions.

About 85% of those newly diagnosed will experience what is known as relapsing/remitting MS (RRMS). They will develop acute symptoms which, over an unspecified period of days, weeks or even months, may improve or resolve.

Of the 85% who start with RRMS, more than 50% will develop secondary progressive MS (SPMS) within 10 years and 90% within 25 years. This term describes a slow development of symptoms which do not resolve over time. Changes can begin very subtly and progress so that the person may experience a steady decrease in physical and/or cognitive capabilities.

In whatever form it presents itself, MS can have a profound impact on an individual’s life and on the lives of close family, social networks and employers. See pages 16 and 17 for more information about the four disease courses identified in MS.

HOW DOES MS EXPRESS ITSELF?

The cause of MS is still not known, although much has been learnt of the role of the immune system in the development of the disease.

Previously, psychological stress, physical trauma and childbirth

were suspected as possible triggers to the onset of the disease but further objective research has failed to support these connections as significant.

WHY DOES MS OCCUR?

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There is no single, simple test that can diagnose MS.

Unlike some medical conditions for which a positive result from one laboratory test will confirm diagnosis eg. diabetes, MS can only be diagnosed by a combination of the recording of clinical history followed by a medical examination and supportive investigations using sophisticated medical technology.

What makes it so difficult is the longitudinal aspect of MS where a single episode may raise the suspicion of MS but is not sufficient to constitute a confirmed diagnosis.

As well, symptoms can often be similar to those which occur in other diseases. For instance, tingling in the fingers can have

a range of more common causes such as sleeping in awkward positions to abnormalities of the spine.

The time of diagnosis can therefore be confusing, challenging and frustrating for the person with MS who wants an explanation, and for the doctor who does not want to cause unnecessary anxiety, or fail to exclude an alternate diagnosis.

Diagnosis can take from a few weeks to years because a single initial episode might settle before diagnosis can be confirmed.

It is only with subsequent episodes of similar or new symptoms that a diagnosis of clinically definite MS can be made.

HOW DO YOU KNOW YOU’VE GOT MS?

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If the medical history and physical examination findings raise the possibility of MS, confirmation may be supported by a positive result from magnetic resonance imaging (MRI).

The development of MRI techniques has improved the accuracy and diagnosis of MS since it was introduced in the 1980s.

An MRI scan shows areas in the brain, spinal cord and optic nerves suggestive of the demyelination process that takes place in MS. Abnormalities seen on MRI scans are not disease specific so the diagnostic significance needs to be considered in the overall clinical picture.

Sometimes it is also necessary to examine cerebro-spinal fluid (the fluid surrounding the brain and spinal cord) to exclude other neurological diagnoses. This can

only be obtained by a lumbar puncture - an invasive procedure undertaken by a doctor in which a needle is inserted into the lower spine and fluid extracted.

This fluid is examined for the presence of a raised level of a specific protein (immune gamma globulin IgG), which is often present as a by-product of the inflammatory process of MS.

Another investigation is visual evoked potentials (VEPs). This is a way of testing the conduction efficiency of optic nerves, enabling identification of abnormalities. Delayed conduction can be a further indication of demyelination.

VEP is just one of a number of neuro-physiological assessment procedures once commonly used in MS investigation but less frequently performed since the advent of MRI.

TESTS TO AID DIAGNOSIS

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An MRI scanner produces detailed images of areas of the body using radio waves and magnetic fields in connection with special computers. It graphically shows up abnormalities in structures in the brain, spine, joints and internal organs.

An MRI examination takes about 40 minutes. During that time the patient lies flat on a padded bench which is then moved slowly into the tunnel-shaped scanner.

Though hollow, well-lit and open at both ends, the experience of lying very still for a long period can sometimes produce anxiety in patients. It can also be very noisy. If you are likely to experience panic reactions, noise intolerance, or

have a history of claustrophobia it is prudent to tell your doctor before the procedure begins.

You will also be asked if you have a pacemaker or any metallic implants which could result in false readings and present a hazard to you.

Because radio and magnetic waves rather than X-rays or radiation are involved in the MRI process it is considered safe. No adverse health effects have been reported following normal exposures.

Radiologists and neurologists sometimes request the use of gadolinium, a substance that requires an intravenous injection. Gadolinium enhances recent disease activity.

UNDERGOING AN MRI EXAMINATION

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Because MS remains mysterious, expressing itself so differently in different individuals, many misconceptions about the disease have arisen. Some of the more common beliefs are:

MS is an inherited condition Yes. To some degree there appears to be an inherited genetic susceptibility to develop MS. Some of the most vigorous Australian research is being conducted on this question and it has been found that between 10 and 20 per cent of people with MS also have a relative with the disease. Many common diseases have a genetically determined factor for susceptibility. For example diabetes, heart disease and rheumatoid arthritis.

MS is contagious or infectious No. Although viral infections have been implicated as a factor in the aetiology of MS, ongoing research has dispelled the possibility of person-to- person spread.

Stress is a primary factor in the onset of MS Emotional or psychological stress has been dismissed as a direct cause of MS. However, because the period of diagnosis is a stressful time some people tend to pin-point a coincident life crisis, illness or injury as a causal factor. It is human nature to look for an apparent reason to satisfy the question, “Why me?".

A change in diet can influence the course of MS No. Early suggestions of a strong dietary link in the control of the disease have not been

supported by extensive and longitudinal studies. However, this does not rule out the need for balanced nutrition for general well-being.

Pregnancy is not advised for a woman with MS No. Again, there is no evidence to support the myth that women with MS should not become pregnant because the pregnancy will aggravate the disease.

Physical immobility is inevitable No. Many people with MS do not become dependent on mechanical aids for their mobility.

MS is a fatal disease Rarely. Most people with MS can expect a near normal life-span. For some people, MS is a severe disease causing life-threatening complications. However, the majority of people with MS die from unrelated causes and have a near-normal life expectancy.

Aside from these major misconceptions, there are other ideas about MS that need to be challenged and corrected.

Occasionally, relatives and friends of a person with MS will perceive the symptoms of the disease as a lack of will or motivation. The person with MS can be judged as not trying hard enough, or of being apathetic or lazy. Alterations in cognitive function or behaviour are almost always due to the disease itself and not to a failure of personal motivation.

MYTHS AND MISINFORMATION

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A DETAILED LOOK AT WHAT HAPPENS IN MS

In the human body the CNS consists of the brain, optic nerves and the spinal cord.

The basic building blocks of this system are the nerve cells which cluster together to constitute what is known as the grey matter or the thin, outer part of the brain and the centre of the spinal cord.

In the brain, grey matter surrounds the inner white matter which is made up of bundles of nerve fibres. These interconnecting nerve fibres can be of varying lengths. Their function is to carry impulses from nerve cell to nerve cell throughout the CNS.

This central system makes connections along the spinal cord with the peripheral nervous system (PNS) which activates movement and muscle tone and sends messages back about sensation. The PNS starts where nerves leave the brain and spinal cord.

An analogy which explains this system more clearly is to compare it with a very complex telephone exchange

which also has the purpose of conveying repeated messages over distances - from one active centre to another.

As in a telephone exchange system, the conducting wires are covered with an insulating material to preclude the leakage of currents, fusing or crossed-wires.

In a similar way, nerve fibres are covered with an insulating material, myelin, a fatty white substance which gives the white matter its name.

The other system relevant to MS in the human body is the body’s main defence mechanism - the immune system.

The basic units of the immune system are the white blood cells, of which there are many different types.

The types most concerned with the process of MS are the macrophage and the T-lymphocytes or T-cells. (See glossary for an explanation of these terms.)

MS is a chronic, progressive, demyelinating disease of the CNS.

In this section we will examine in depth the relevant anatomy - where the disease occurs;

the pathology - what goes wrong with normal function and the outcome - the results over time.

THE ANATOMY OF MS

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In MS, one of the many types of T-cells appears to inaccurately identify the myelin of the CNS as a foreign substance and mounts an “offensive” which initiates an inflammatory response. It is during the inflammatory phase that the myelin may be damaged.

After this process other components of the immune system assume their role of consuming and disposing of the post-inflammation debris. If inflammation persists, it can lead to the development of “plaques” or scars.

In MS, the myelin is destroyed and the specific cell which is responsible for manufacturing myelin, the oligodendrocyte, fails to regenerate effectively, leaving non-specific scar tissue in the area of damage.

Scientists have called these scars, plaques or sclerosis. It depends on the sites of the myelin breakdown as to the particular symptoms that are noted or experienced in MS.

The exact functions of oligodendrocyte cells are currently subject to ongoing research. Promising studies have found that the myelin of some animals can be stimulated to regenerate. So far, however, achieving the same results with the human myelin sheath

has not been established. Researchers continue to investigate ways of achieving this.

Research has indicated that as well as myelin, the nerve fibres can also be damaged in MS.

Recent research has raised new questions about the role and process of inflammation and oligodendrocyte death in MS. To date, no evidence is available to answer these questions. However, it is now known that axonal damage or loss is related to the inflammatory lesions in MS, but the contribution of these axonal changes to disability is not yet clear.

THE PATHOLOGY OF MS

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This is one of the most difficult questions to answer because even where there is enough medical evidence to diagnose the disease, no-one can predict how MS will affect an individual over time.

Each person is affected differently and to different degrees. Learning to live with and manage the disease is a major challenge for the person with MS and their family.

WHAT HAPPENS TO PEOPLE WITH MS?

As a result of damage to the myelin at different sites in the CNS a range of neurological problems can develop.

For example, if the optic nerve behind the eye is involved, visual problems such as double, blurred or disturbed vision can occur.

As the inflammation subsides, the main visual disturbance usually reduces. There may be residual changes in vision which

only show up on visual evoked potential testing.

With subsequent attacks of MS - namely further inflammatory episodes - visual disturbances may recur if the optic nerve is again involved.

If the sensory centres of the CNS are involved in an inflammatory episode, abnormal sensations may be experienced, eg. pins and needles and tingling.

THE OUTCOME OF MS

• Relapsing-Remitting MS (RRMS) is the most common form of the disease. It is characterised by clearly defined acute attacks with full recovery (1a) or with residual deficit upon recovery (1b). Periods between disease relapses are characterised by a lack of disease progression. Approximately 85% of people with MS begin with a relapsing-remitting course.

THE PATTERNS OF MS

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FOUR DISEASE COURSES HAVE BEEN IDENTIFIED IN MS

• Primary Progressive MS (PPMS) PPMS is characterised by progression of disability from onset, without plateaus or remissions (2a) or with occasional plateaus and temporary minor improvements (2b). A person with PPMS, by definition, does not experience acute attacks. Of people with MS, only 10% have PPMS. In addition, the diagnostic criteria for PPMS are less secure than those for RRMS so that often the diagnosis is only made long after the onset of neurological symptoms and at a time when the person is already living with significant disability.

• Secondary-Progressive MS (SPMS) SPMS begins with an initial relapsing/remitting disease course, followed by progression of disability (3a) that may include occasional relapses and minor remissions and plateaus (3b). Typically, secondary-progressive disease is characterized by: less recovery following attacks, persistently worsening functioning during and between attacks, and/or fewer and fewer attacks (or none at all) accompanied by progressive disability. According to

This section is an excerpt from the MS Information Sourcebook.

Figure 1a

increasing

disability

time

time

increasing

disability

Figure 1b

Figure 2a

increasing

disability

time

time

increasing

disability

Figure 2b

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The National Multiple Sclerosis Society (USA) (2005) “Progressive disease” in the MS Information Sourcebook. New York: The National Multiple Sclerosis Society (USA). Available from: www.nationalmssociety.org/sourcebook-progressivems.asp

Figures 1 through 4 adapted from:Lublin, F. and Reingold, S. (1996) Defining the clinical course of multiple sclerosis: results of an international survey. National Multiple Sclerosis Society (USA) Advisory Committee on Clinical Trials of New Agents in Multiple Sclerosis. Neurology 46(4):907-11.

• Progressive-Relapsing MS (PRMS) PRMS, which is the least common disease course, shows progression of disability from onset but with clear acute relapses, with (4a) or without (4b) full recovery. Approximately 5% of people with MS appear to have PRMS at diagnosis. Not infrequently a patient may be initially diagnosed as having PPMS and then will experience an acute attack, thereby establishing the diagnosis of PRMS.

Figure 3a

increasing

disability

time

Figure 4a

increasing

disability

time

time

increasing

disability

Figure 4b

increasing

disability

Figure 3b

time

some natural history studies, of the 85% who start with relapsing-remitting disease, more than 50% will develop SPMS within 10 years; 90% within 25 years. More recent natural history studies (perhaps because of the use of MRI to assist in the diagnosis) suggest a more benign outlook than these numbers suggest. Nevertheless, many patients with RRMS do develop SPMS ultimately.

The National Multiple Sclerosis Society (USA) (2005) “Progressive disease” in the MS Information Sourcebook. New York: The National Multiple Sclerosis Society (USA). Available from: www.nationalmssociety.org/sourcebook-progressivems.asp

Figures 1 through 4 adapted from:Lublin, F. and Reingold, S. (1996) Defining the clinical course of multiple sclerosis: results of an international survey. National Multiple Sclerosis Society (USA) Advisory Committee on Clinical Trials of New Agents in Multiple Sclerosis. Neurology 46(4):907-11.

The National Multiple Sclerosis Society (USA) (2005) “Progressive disease” in the MS Information Sourcebook. New York: The National Multiple Sclerosis Society (USA). Available from: http://www.nationalmssociety.org/site/Pageserver?pagename=HOM_LIB_sourcebook_progressivems

Figures 1 through 4 adapted from:Lublin, F. and Reingold, S. (1996) Defining the clinical course of multiple sclerosis: results of an international survey. National Multiple Sclerosis Society (USA) Advisory Committee on Clinical Trials of New Agents in Multiple Sclerosis. Neurology 46(4):907-11.

In this section we will present a general outline of the symptoms that may occur in MS. We remind the reader these changes are not inevitable.

MS may affect any of the central nerve pathways. Hence, there is a wide range of physical and sensory signs and symptoms that may be experienced during the course of the disease.

To better explain the difference between signs and symptoms it

is necessary to understand that signs are objective, observable manifestations of neurological abnormalities, such as unsteady walking or abnormal tendon jerks, elicited by the examining doctor.

Symptoms are subjective experiences of abnormal feelings, such as pins and needles, numbness or fatigue and these can only be described to the doctor.

THE PRIMARY CHANGES OF MS

Sensory

In MS the skin sensations of touch, pain and temperature response are most often affected.Sensory nerve pathways can register either too much or too little sensation. For instance, one person with MS may experience such extreme skin sensitivity that even bed-clothes can become painfully irritating.

Another person with MS may be insensitive to many forms of sensation. In cases of reduced sensitivity, care needs to be taken to avoid scalds or burns from hot water, heaters or hot objects in the desensitised area.

It was once thought that pain was not a prominent symptom of MS. However, it is now known that 40-60 per cent of people experience some pain due to their MS. Some people report an unpleasant sensation

of “having a tight band around the body” or shooting pains in the face. This facial pain is known as trigeminal neuralgia.

Disordered sensory feedback can be part of the disease and can result in inappropriate information being transmitted about the position of limbs, resulting in problems with balance or unreliable signals from the bladder.

Hearing, taste and smell rarely alter although sight is a sense that is very commonly affected. Visual symptoms can include double vision, blurred vision and an inability to focus.

Being able to cope with the glare of harsh lights at night can also become difficult.

Despite the range of visual problems that can occur, blindness in the long-term is rare.

THE PHYSICAL CHANGES

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Motor function

The problems that become most apparent to others are caused by a disturbance of motor function, movement and coordination.

Leg movements can be affected by muscle weakness or incoordination, so walking may become slow and ungainly. There may be a tendency to stagger or trip in a manner that can sometimes suggest intoxication.

Even people who walk quite well can find they have subtle problems with running, walking in the dark or going up and down stairs quickly.

Tremor can sometimes be observed in hand or head movements. Extra effort may cause this tremor to become more pronounced.

Fine motor control can sometimes be affected, especially that needed to perform tasks such as doing up buttons, writing or picking up smaller objects.

Speech may also change during the course of MS resulting in some slurring or hesitation. It should be emphasised, however, that language function is rarely affected as it is in stroke.

Comprehension and expression skills are almost always retained despite difficulties in articulation.

At any time during the course of the disease, people with MS may experience problems with

bladder and bowel function.

This can result in frequency or urgency of urination, both during the day and at night. Bowel function may also change with an increased propensity to constipation. Thus, questions about bladder and bowel function often become part of the assessment and management of MS-related problems.

Because the nerve pathways to the lower body can be involved, sexual function can sometimes be affected. This may include changes in genital sensation, arousal or erectile function. Changes in libido can also be an outcome of the psychological impact of MS or the cumulative fatigue.

Many people with MS find they are adversely affected by rises in body temperature that can occur in hot weather, after hot showers or as a result of feverish illness.

This may temporarily aggravate symptoms because nerve message conduction is slowed by rises in the temperature of the body. In compromised nerve pathways messages may not get through at all. When the temperature is reduced, symptoms will subside. It is understandable that such changes can be mistaken for an MS exacerbation or episode, when in fact they are temporary responses to rises in temperature. For some people with MS who experience a

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THE PSYCHOLOGICAL ASPECTSMS is accompanied by a range of psychological issues with which it can be difficult to cope. From the time of early symptoms and diagnosis through to the ongoing daily hassles of managing chronic conditions, people with MS experience periods of intense stress and periods of relative calm. Emotions, therefore, fluctuate as these episodes of distress and composure come and go.

This pattern of fluctuating emotions can be difficult for the person with MS, family and friends and health professionals. Knowing what to expect can be helpful and the description of the psychological reactions given below can assist in dealing with them.

Trauma reactionsSome people are traumatised by receiving a diagnosis of MS and/or living with a potentially deteriorating and unpredictable disease. Post-traumatic stress disorders produce three major

groups of symptoms:

• Re-experience – unwanted memories and thinking about the stressor, dreams and nightmares about MS, flashbacks to the day of diagnosis, etc.

• Hyperarousal – physical symptoms during re-experience or reminders of the stressor, including rapid breathing, racing heart, sweating, nausea, shaking, etc.

• Avoidance – escaping from reminders of the stressor, trying not to think about it, feeling emotionally numb, avoiding crowds and people in general, etc.

When affected in this way people can show denial, anger and other unhelpful emotions and patterns of behaviour.

AnxietyEven without being traumatised, people can develop excessive fear and worry about what might

major sensitivity to heat, air conditioning can become a necessity rather than a luxury.

Fatigue is another common experience of MS and when severe it can be extremely disabling to the point where it is often called “the hidden disability”. Many people with MS must therefore modify their activity levels and avoid

becoming overtired. Energy expenditure should be carefully monitored.

Even rests as brief as five minutes, spread throughout the course of a single activity, can serve to recharge the body’s “batteries” and appear to have better restorative function than longer rests.

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happen with regard to all the unknown issues surrounding diagnosis and prognosis of MS. This can lead to them developing catastrophic thinking, becoming preoccupied with seeking reassurance or becoming caught up with examining a stream of “what ifs?”.

DepressionA certain amount of fluctuating sadness, grief, disappointment and pessimism is to be expected when people receive a diagnosis of and live with, a chronic and potentially debilitating disease. Depression, however, is more than this. Depression is a serious condition that continues all day, everyday for weeks to months on end. It affects mood, appetite, sleeping patterns, energy, concentration levels, self-esteem and even the motivation to live. Suicidal thinking can occur.

Depression is disturbingly common in MS, with virtually one-in-two people with MS experiencing a major clinical depression at some time between diagnosis and death. Suicide occurs at rates eight times greater among this group than in the general population. Depression, therefore, is a serious condition and requires people with MS, their families and health professionals to be vigilant about its possible emergence so that specialist professional intervention can be sought.

Fear and powerlessness Being confronted with the news

of MS can be overwhelming and some people can become fearful of the future and feel powerless in the face of this condition. In these circumstances, people may feel vulnerable and incapable of making decisions or may constantly seek support.

These reactions can become wearing on family and friends and MS can have powerful effects on relationships.

Acceptance, adjustment & adaptation People with MS are often told that they need to get to a state of “acceptance” about their condition or that they need to achieve a position of “adjustment”. This advice leaves many people with MS feeling misunderstood, angry and insulted because they don’t want to accept limitations or don’t feel that they can adjust to the important changes to their body. These reactions are not surprising to those that have chronic conditions but is unexpected by family, friends and even some health professionals.

What people mean when they talk about “acceptance” and “adjustment” is that the person with MS may need to make some changes to the way they do things to accommodate their symptoms. This is “adaptation”. To successfully and fully engage in life some people with MS may need to adapt the way they do things or use equipment that has been adapted to their needs.

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The need to “adapt” is usually better understood and tolerated by people with MS and helps to encourage them to seek the assistance and support from which they can benefit.

Assistance and supportThe emotions and reactions that so commonly accompany this disease usually settle with the simple passage of time and discussions with family, friends and favourite health professionals. For many, however, these feelings can get out of control and do not resolve easily. In these circumstances, psychological treatment and/or support can be helpful. MS Societies provide counselling and support groups that can assist. For more complex reactions, referral to a clinical psychologist is recommended and short-term therapy usually resolves the distress quite rapidly, leaving the person with MS with more positive ways of dealing with their situation.

Neuropsychological issues When the lesions of MS occur in particular regions in the brain, alterations in cognition (memory and thinking skills) and associated behaviour may occur.

Some of the common cognitive changes experienced are difficulty in maintaining prolonged periods of concentration in distracting settings and changes in the reliability of short-term memory

so that the learning of new skills and systems can sometimes take longer than expected.

A less usual but equally perplexing difficulty can be poorer voluntary control over behaviour and moods. Emotional lability (“tears at the drop of a hat”) can be embarrassing for the person with MS and worrying for those in close relationships with them.

Impulsive responses can similarly become harder to check at will. There could also be reduced ability to initiate and maintain activity. This could be misinterpreted as laziness or lack of motivation but again, should be recognised as part of the disease process of MS for some people.

Some people with MS report “a short fuse” or an increased irritability to minor upsets. In a previously easy-going person these uncharacteristic responses may be mistakenly interpreted as a sign of major distress or anger.

Like any other MS symptom, it is important to recognise these manifestations as part of the disease and although they cannot be cured they can often be managed appropriately.

If, however, the apparent changes in cognition or behaviour are denied or ignored, there is the potential for misunderstandings to be prolonged and made more distressing than they need to be.

THE MEDICAL MANAGEMENT OF MSThe primary health professionals involved in the care of a person with MS are the patient’s own general practitioner (GP) and neurologist who are supported by a team of health professionals. The MS Society is part of that team.

Not all symptoms that a person with MS can experience will be due to MS and a medical practitioner should be consulted to find their cause. This practitioner could be a GP or neurologist. When newly diagnosed with MS, the changes in the body can be very difficult to understand and also to know when to seek help and when not to. Knowledge about personal symptoms and

the need to seek advice comes with experience and time. Some people may join a support group and use the knowledge and experience of the group and some contact the staff of the MS Society to ask for advice and assistance. It is, however, important to develop a good relationship with a GP and neurologist because ultimately they are responsible for the overall care of a person with MS.

The MS Society has medical and health professional staff to assist doctors in obtaining information about the best treatment and updating knowledge about MS. You can also call the MS Society directly to speak to relevant staff.

It should be remembered that not all health problems experienced by a person with MS will be due to the disease, so it is important for the person to remain under the care of his or her own GP for routine health and medical procedures.

Acute exacerbations may be treated with intravenous or oral corticosteroids, which have anti-inflammatory and immuno-suppressive actions.

Other treatments look at modulation of the long-term disease process, either by activating or suppressing the immune system. This is

achieved with medications such as azathioprine, mitoxantrone, methotrexate or cyclophosphamide. These treatments may be used for the more progressive forms of the disease.

One of the most promising breakthroughs of recent years involves drugs which modulate the immune system and have also been shown to reduce the frequency of episodes of MS in the relapsing/remitting form of the disease. These drugs are the beta interferons (Avonex, Betaferon, and Rebif) and glatiramer acetate (Copaxone) and are currently available on the Pharmaceutical

THE MEDICAL TREATMENT OF MS

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Benefits Scheme for the treatment of relapsing/remitting MS.

In people with relapsing/remitting disease, these drugs have demonstrated a reduction of brain lesion development, as evidenced by MRI, and also appear to slow down the accumulation of disability.

Please contact your local MS Society for more details on drug therapy in MS and for injection education services and support. (See inside back cover for state MS Society contact details.)

SPECIFIC MANAGEMENT ISSUES

FatigueManagement can be achieved through energy conservation, planning, careful preparation of activities and delegating tasks to others. Medication can be useful in some cases.

Heat intolerance Recognition and avoidance of rises in body temperature is important in order to minimise a temporary increase in symptoms. Body temperature can rise due to hot showers, infection or sun exposure.

PainPainful nociceptive (primary pain) sensations usually respond to simple analgesic treatment. In more severe cases other medications may be needed.

Secondary pain such as that arising from altered posture or

abnormal gait patterns can be prevented or relieved, following careful professional assessment.

Neuroceptive pain is also quite common in MS and can be persistent. If the pain is not easily controlled referral to a specialist pain clinic may be helpful.

SpasticityThis is the involuntary contractions of muscles when being stretched and is dependent on muscle length and speed of movement. Spasticity is a common feature of MS, which may be accompanied by pain, cramping or sleep disturbance. It requires careful assessment prior to any intervention. Factors such as temperature change, intercurrent infections, bladder and bowel disturbance and skin abrasions may serve to worsen spasticity.

Management includes avoidance of causal factors. Assessment and management by physiotherapists can be helpful. In some cases medication to relax the muscles becomes necessary but in others the spasticity is useful for standing and walking. Intervention with drugs can prove counter-productive and needs to be carefully monitored.

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Bladder and bowel problemsConstipation is the most common bowel problem in MS. This is usually managed by increasing fruit and vegetable intake in the diet, an increased fluid intake and exercise where appropriate.

Bladder problems are common at any time in MS and require careful assessment to establish the exact type of dysfunction. Basically there are three major types of disorders: “failure to store”, “failure to empty” or a combination of both.

The strategies to manage these problems will depend on the outcome of assessment.

TremorSome people with MS may develop tremor of the limbs and head. While many physical techniques and medications have been used for this problem, few have been found to control it completely.

Sexual problems These may become an issue for a person with MS as either part of the disease process or as a result of psychological disturbance. Careful specialist assessment is the best basis for successful management.

Cognitive changes Cognitive difficulties such as a poor memory, reduced

concentration or inefficient thinking patterns can be well managed with appropriately designed strategies. These changes are best identified by specialist neuropsychological assessment followed by discussion.

Cognitive rehabilitation has some helpful strategies for cognitive problems in MS. While the practical application of these strategies is still being developed and explored, new techniques and approaches are being developed all the time. However, any strategy needs to be custom-fitted to be effective for the individual, so consulting with an appropriately qualified and experienced health professional is essential.

Psychological problemsLong-standing or severe depression or excessive anxiety can be helped with appropriate medication, which can be prescribed by a GP or a psychiatrist.

In these situations counselling and psychotherapy are extremely useful in helping people with MS and their families to explore the often complex emotional reactions.

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A person with MS is not an island.

Everyone around them - from the immediate family to “significant others”, work associates, close friends and neighbours - may find the diagnosis of MS difficult to accept, and the ongoing process of living with MS a continuing challenge.

This is understandable because all family members also take on the unknown - the “why us?” and “what if?” aspects of an uncertain future.

As a result of the recognition of this uncertainty, many of the information, education and counselling services provided through all the Australian MS Societies are available to any interested family member.

Close friends and concerned neighbours have also been among the broader social circle who have sought information and guidance about the best way of relating to a person with MS.

The reactions of a newly diagnosed person with MS are usually taken on in a similar way but from an obviously different perspective, by family members.

Thus, they are sometimes surprised at the range of feelings they may experience: relief that it is “only MS”; anger at the diagnosing neurologist; denial

that there might be a need to change; fear of the future; anxiety; powerlessness when confronted with the “no cure” MS message and depression and grief at the reality of possible changes that the disease might bring to the family.

Many family members report an undue degree of guilt at experiencing these emotions because “after all, I’ve got my health - why am I feeling frustrated?”.

Another common reaction, which is understandable when well considered, is an occasional feeling of resentment towards the person with MS, especially as the implications of the disease are recognised. Concern and preoccupation with all the issues surrounding MS can often displace other family issues.

Another reaction, which is usually well-meaning but not always helpful, is a tendency to over-protect the person with MS.The period of adjustment to MS for family members can therefore also be prolonged and difficult to negotiate. The manifold implications of MS are not easy to assimilate and so it does take time.

During this period the person with MS, and his or her family, must confront and deal with several significant social-emotional issues.

SOCIAL/EMOTIONAL AND FAMILY ISSUES

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Because of the complexity of these issues, there is no straight-forward approach to dealing with them.

Discussions with MS Society health professionals can be extremely helpful in recognising all the possible options and in highlighting the preferred courses of action.

The most common issues that need to be addressed are:

• Disclosure of diagnosis to family and friends.

• Disclosure to employers and

work colleagues. • Relationships, sexuality,

pregnancy and other personal issues.

• Long term career, travel and further education plans.

• Insurance issues such as maintenance of adequate health cover.

• Decisions about income

protection insurance, superannuation and life insurance policies.

• Disclosure to driving licence

authorities and to motor vehicle insurers.

• Recreation and lifestyle issues.

These may include identifying appropriate diets and sports options which take into

account the special features of MS such as heat intolerance, energy conservation and weight control.

Responses and decisions made by individuals and their families should be reviewed as time passes and as needs, priorities and situations change.

As these changes occur, it can be helpful to call upon the skills and experience of health professionals, both those associated with the MS Society and the wider community.

Seeking assistance from a social worker, psychologist or psychiatrist does not imply inadequacy but can, in fact, be a very positive step in accepting that MS is a complex, ongoing challenge for many people.

In the long term, family and close friends may experience some relatively exhausting and confronting emotional situations, even if the diagnostic period was relatively well-handled.

To deal with episodes that have the potential to produce anger or resentment, counsellors encourage family members to “openly negotiate” changes that can ease the impact on everyone involved in the life of the person with MS.

For instance, where reallocation of family responsibilities and household duties is necessary,

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open discussion about how such duties might be differently managed in terms of both time and energy expenditure is useful so that “double duties” don’t fall on the shoulders of one household member.

The approach to negotiating change is to look at how everyone might be involved and therefore might benefit.

The physical implications of MS can sometimes lead to a reduction in the range of social and recreational activities.

The reality is that the person with MS will not always have the energy to keep up the same social activities. The resulting social isolation can sometimes be interpreted as “my friends have abandoned me”.

The important point in this case is that the situation should be clearly explained to friends, relatives and neighbours so

that they too can adjust their expectations.

Family members who might be tempted to reduce their outside social interactions and pursuits should be encouraged not to do so because external relationships are often critical for support, understanding and to provide a balance to the often overwhelming issues of MS.

Care for oneself as well as love and support for a family member with MS must be valued equally. Family members will be more likely to be sure of a long term capacity to deal with the reality of living with MS if they are able to match concern for the person with MS with a recognition of their own needs and aspirations.

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Multiple Sclerosis Research Australia (MSRA) is an initiative by MS Australia which has energised Australia’s leading researchers and synergised the interface between the lay and research communities.

For the first time, laboratories and research groups in Australia’s premier academic institutions have been brought together with a unifying identity and mission. Five major research centres have been formed, each focused on a key theme of MS research. Within the research centres there are over 35 research laboratories and more than 150 scientists and clinical researchers. It will also bring the challenge of MS research to the attention of Australia’s corporate, scientific, government communities and to the general public.

MSRA will focus its research activity within the five major scientific disciplines: immunology, genetics and epidemiology, neurobiology, clinical research and social research.

Using these disciplines, MSRA is developing a strategy which provides an immediate focus for funding large-scale research on three central questions. These questions, if answered, will provide breakthroughs in understanding MS. The questions will relate to issues such as:

1. Genetics, the environment and MSUnderstanding the underlying nature of MS has been sign-posted by studies of genetics and the environment. One study, known as GAMES, has Australian researchers involved in a worldwide endeavour to identify regions of the human genome that may be related to MS.

Another focus for world-class Australia research is the “latitudinal effect”, where the prevalence of MS is studied in comparison with a person’s distance from the equator, their exposure to ultraviolet light and the link to vitamin D and MS. There are already ground-breaking results on this effect published by researchers based in Canberra, Melbourne and Hobart(1).

Also, new insights into the behaviour of certain common viruses have prompted a re-evaluation (in Australia and elsewhere) of their role in early childhood and their links to the development of MS eg. the Epstein Barr virus.

2. Blood-brain barrierThe blood-brain barrier provides the physical separation between the central nervous system and the rest of the body. It is here that the assault on nerve cells (axons) and their insulating

AN OVERVIEW OF CURRENT RESEARCH INTO MS

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sheaths (myelin) is launched, resulting in demyelination and the symptoms of MS.

A new therapy in development targets the way autoreactive T-lymphocytes attack the brain and spinal cord. Initial trials suggest it may be twice as effective as existing treatments in preventing injury in early MS. Further Australia-based trials are underway.

A number of other mechanisms that have the potential to modify the disease at the blood-brain barrier are now being investigated. Australia has some of the world’s leading scientists and laboratories involved in this work.

3. Myelin repair and regenerationUnderstanding natural repair mechanisms of myelin is a goal for several Australian laboratories. In one example, researchers are working to harness endogenous stem cells (already existing in the body) and guide their differentiation by chemical signals, in order to repair injured regions of the brain.

MSRA websiteFor further information and updates on Australian and overseas research go to www.msra.org.au or contact MSRA at info@msra.org.au

1 van de Mei, I. et al (2003) Past exposure to sun, skin phenotype, and risk of multiple sclerosis. BMJ 327(7410):316

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Before a drug is approved for use as a treatment it has to undergo rigorous testing. The compound is first developed in a laboratory and then tested in animals before undergoing Phases I, II & III of clinical trials in humans. This process takes many of years and is very expensive.

The three phases are:I – testing on a small group of healthy people for safety issues.

II – testing on a larger group of people with the targeted disease to see if the drug cures or beneficially alters the signs and symptoms of the disease. Not all the participants receive the active drug in this phase.

III – a continuation of phase II with a much larger group of people and continued for a number of years.

This means that a number of drug trials are always underway at various stages of the testing process.

Since 1993 a number of interferon-beta based drugs have been approved for use in MS. These were the first disease modulating drugs found to be successful and mostly well tolerated in people with RRMS.However, more recent research

and the use of MRI has provided a much better understanding of the disease process in MS, leading to different approaches in research and trials using newly developed therapeutic agents.

For instance, MRI has shown that the axons themselves become damaged and research currently focuses not just on remyelination but also on axon repair and the prevention of lesions.

A new class of drugs (monoclonal antibodies) has been shown to inhibit the movement of potentially damaging cells across the blood-brain barrier.

Breakthroughs such as these are expected to continue over the coming years and already oral treatments, vaccine-like drugs and better symptom-specific drugs are in all the phases of clinical trials.

Please contact your local MS Society for further information about drug trials in MS (contact details inside back cover) or visit: www.msaustralia.org.au

DRUG TRIALS

Each state of Australia has an MS Society which provides a range of programs and services to people with MS and their families. (See inside back cover for state MS Society contact details.)

Whilst programs and services may vary slightly from state to state, the basic and overiding aim is to ensure that people with MS, their families and carers receive the best available information, support and specialist assistance to maintain maximum independence and well-being.

Some of the specialist programs and services provided through the MS Societies include:

Resource Centres Aside from administrative headquarters, most states have a number of regional centres which serve the needs of both metropolitan and rural clients. Staff at the resource centres may include community nurses, immunotherapy nurses, occupational therapists, physiotherapists, social workers, rehabilitation physicians, neuropsychologists, recreation workers and community workers.

Specialist assistance includes: • Individual assessment

• Advice and professional counselling

• Specialist information

• Individual program plans

• Assessment of equipment

both for home and the workplace

• Help in accessing appropriate community facilities and programs

• Addressing recreational and social needs

Peer support Linking people with MS and family members to self-help groups by telephone, in person or by online contact, provides opportunities to get to know others who can relate to their situation and provide friendship and mutual support. MS Societies maintain a close relationship with MS self-help groups and can facilitate these links to peer support.

Research Each state MS Society makes a major contribution to research via MSRA. On the recommendations of the Research Management Council, MSRA awards grants which support research into all aspects of MS. Updates and results will be available on the MSRA website and in newsletters and media releases.

Information resources To encourage and promote community understanding of a disease as complex as MS, a broad range of pamphlets, booklets and information sheets are available to the public. Some state centres also have library facilities and can arrange workshops, seminars and the provision of guest speakers.

MEETING THE NEEDS OF PEOPLE WITH MS AND THEIR FAMILIES

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EducationTailored education programs for people with MS, including those newly diagnosed, are offered in the form of group sessions and/or teleconferences. These include topics such as Understanding MS, Managing Fatigue and Staying Well with MS. Contact your local MS Society or use the website (www.msaustralia.org.au) to find available programs.Knowledge is Power is an at-home educational series available nationally for people newly diagnosed with MS. The program can be delivered by email or post across Australia.

Accommodation, respite and attendant care All accommodation support services aim to assist people with MS to live in the home of their choice and maintain independence. Limited permanent accommodation is available as well as opportunities for respite and attendant care options.

Employment advice MS Society staff have developed specialist knowledge that can help people with MS assess and make informed decisions about their employment, superannuation and legal options.

Family support Most MS Societies offer a range of family support programs and services. These include tailored education series designed to enhance family understanding of MS and family consultations, providing children or parents of a person with MS the opportunity to have their questions answered. These are available at any time and are open to family members.

Volunteer Program Trained volunteers can provide support to people with MS by forming friendships, offering peer support and facilitating involvement with the MS Societies' enhanced lifestyle programs.

MS Information Lines Information about MS and connection to programs and service options are available through the MS Society’s Information Lines. These are staffed by experienced health professionals during working hours. (See inside back cover for state MS Society contact details.)

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In this booklet, and in other material you might be reading, you will come across terms which are defined below.

AetiologyThe study of the cause of disease.

AntibodiesProtein substances produced by the human body in response to antigens (see next definition). The most significant antibodies produced in cases of MS are those made by B-lymphocytes.

AntigenThe protein part of an organism or cell which the body recognises, rightly or wrongly, as foreign, and which therefore stimulates the production of antibodies to mount a defensive immune action. Viruses and bacteria are examples of external antigens. When an antigen comes from part of the body, the reaction is known as auto-immunity. MS may be the result of either an external antigen or an autoimmune response.

AstrocytesSpidery or star-shaped cells which hold together the structures in the central nervous system. Astrocytes control the blood-brain barrier and are responsible for producing scar tissue when myelin sheaths have been irreparably damaged.

Anti-viral agentsDrugs and other substances which are used to counteract viruses.

AutoimmuneA disease occurring when the body misrecognises part of its own tissue as foreign and attacks that tissue causing damage.

AxonsThe fibres which carry messagesin the nervous system. They are protected and insulated by myelin sheaths.

BenignIn the medical sense, this term means mild or not causing serious damage.

Blood-brain barrierA type of filter which prevents some substances but not others from moving into the central nervous system from the bloodstream.

B-lymphocytes (B-cells)A major family of white blood cells which are produced in the bone marrow and circulate in the bloodstream. They are one of the immune system’s weapons in attacking invading organisms, through their production of antibodies.

CAT scan (CT scan)An X-ray technique which produces images of the body in thin slices rather than presenting a flat view from one perspective.

CaucasianA member of the “white” or light skinned races of humankind.

GLOSSARY OF TERMS

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Central nervous system (CNS) Defined as the brain, optic nerves and spinal cord, the CNS is the body’s peak control system. MS occurs only within this system.

Cerebrospinal fluid (CSF) The special fluid which bathes the CNS. It can be tapped for analysis using a lumbar puncture: a procedure in which a needle is inserted between lumbar vertebrae and fluid is drawn off.

Chronic Long lasting: MS is a chronic condition. The opposite medical term is acute, meaning a condition which is marked by a crisis or sudden onset.

Cognitive function Memory and thinking-related skills and their effect on behaviour.

Demyelination The disease process in which the myelin sheaths around nerve fibres in the CNS are attacked, damaged and replaced by scar tissue. There are a number of demyelinating diseases in humans and animals but MS is the most common in humans.

Dormant Inactive. Some viruses are known to lie dormant in the body for long periods of time, subsequently becoming activated. A possible role of viral infections in MS still has not been excluded.

EAE (experimental allergic encephalomyelitis) An autoimmune demyelinating disease of mice and other small animals which closely resembles MS in its processes and effects and is therefore used for laboratory study in MS research.

Epidemiology The science of studying diseases in whole populations - a word derived from “epidemic”.

Evoked potentials Nerve conduction can be assessed by testing the body’s response to outside stimulation, usually through the eyes or by touch. Such tests can sometimes show evidence of damage to the CNS when there are no obvious symptoms. They measure the magnitude and speed of the condition by detecting the small electrical output of nerves.

Exacerbation (bout, attack, relapse) In MS, an acute recurrence of previous symptoms or the relatively sudden development of new symptoms; both are the result of renewed disease activity in the CNS.

Idiopathic The cause is unknown.

Immune gamma globulin (IgG) A protein made by B-cells and normally found in the bloodstream. IgG carries antibodies. Raised levels in the CSF are additional evidence in diagnosing MS.

Immunosuppressive Able to suppress some or all of the functions of the immune system. Drugs which can do this are given to people who have organ transplants so the body does not reject the new component.

Immune system The complex system by which the body recognises and destroys antigens. It uses various families of white blood cells made in such organs as the bone marrow and the thymus gland. The study of this system (immunology) is now a very important part of medical science.

Incidence The number of new cases of a disease or condition occurring in a given population in a given period, usually a year. See also the definition for Prevalence (p41).

Inflammation The body’s response to injury, infection or other attacks. On the skin, this can be seen as redness and swelling. In the CNS an attack on the myelin sheath results in accumulation of white blood cells and fluid, called oedema (swelling).

Interferons A group of proteins which are made by cells when infected

with a virus, and which can prevent nearby cells from being infected. Types of interferons are alpha, beta or gamma. Beta interferons modulate the immune system and have been shown to reduce the number of exacerabations in relapsing/remitting MS.

Longitudinal Of length or duration, implying ongoing or long-term.

Lymphocytes Families of white blood cells with different functions in the body’s immune system (see B- and T-lymphocytes, natural killer cells).

Macrophage A white blood cell which literally eats and disposes of debris in the CNS following tissue damage. The macrophage is made in the bone marrow.

Microglia A component cell of the CNS, it helps the macrophage remove damaged tissues after an attack.

Motor nerves Nerves which the brain uses to control movement of muscles.

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MRI (magnetic resonance imaging)A scanning technique for producing images of the body’s internal tissues. Like CAT scanners, MRI scanners provide a picture of a thin slice of the body but by using magnetic fields and radio waves rather than X-rays. Gadolinium, a contrast-enhancing agent, is sometimes given by injection before an MRI to identify the areas of blood-brain barrier breakdown and demyelination. It usually clears from the MRI in 6-8 weeks.

MyelinThe many-layered sheath, composed mainly of fats and protein, which are wrapped around nerve fibres. They insulate the fibres from one another and aid conduction. Myelin is damaged in MS thus interfering with nerve impulses.

Myelin basic proteinA protein which forms an important part of the myelin sheath. It has proved significant in both inducing and protecting against EAE, but this effect has not yet been demonstrated in MS in humans.

Natural killer (NK) cellsA group of lymphocytes made in the bone marrow. As their name implies, they destroy other cells which have been identified as faulty. They are part of the body’s immune defence system.

Nerve cell (neuron)Tiny structures which form the main component of grey matter. The billions of nerve cells in the brain are the starting point for messages carried along nerve axons (fibres), and both cell and fibre are part of the same structure.

Nervous systemThe body’s complex message system, made up of the CNS, the peripheral nerves (eg. those leading from the CNS to the limbs) and the autonomic nerves (which control heart beat, blood pressure and other functions not under conscious control).

NeurogenicArising from, or with, a neurological basis.

NeurologistA physician specialising in diseases of the nervous system and usually the clinician who will make the definitive diagnosis of MS.

OedemaA medical term to describe an abnormal build up of fluid in body tissues, usually after injury or infection. Sometimes oedema is visible as swelling in the skin. It is also part of the inflammatory process in MS.

Oligodendrocytes (oligodendroglia)Cells in the CNS which are responsible for making and then maintaining the myelin sheath.

PathogenAn agent causing disease.

PlaquesIn MS, a synonym for scar tissue.

PrevalenceThe number of cases of a disease that are present in a population at a specific time. This could be a point in time (point prevalence) or over a period of time (period prevalence).

ProgressiveUsed in medicine to describe a condition or disease which gets worse over time. In MS, there is the primary progressive form, that is progressive from the outset, and the secondary progressive form in which progression follows relapsing/remitting MS.

Remitting (relapsing/remitting)A term used to describe a disease in which symptoms come (relapse) and then go (remissions). Most people with MS experience such a pattern of symptoms in the early stages of the disease.

RemyelinationThe opposite process to demyelination. Some evidence exists to show that myelin can be repaired in the CNS by a process not yet understood. Remyelination (and even regrowth of fibres) is commonly observed in the peripheral nerves and the possibility of encouraging this in the CNS is being actively explored for its obvious potential to correct some of the damage caused by MS.

SclerosisScarring of tissue within the body.

Sensory nervesThose nerves which convey information back to the brain about the environment outside and inside the body.

Specialist rehabilitation teamA group of health professionals from varying disciplines working together to maximise a person’s abilities.

SymptomaticOf or related to symptoms. Some researchers are trying to find ways to ease the symptoms of MS; that is, to provide successful symptomatic treatments which do not, however, alter the disease process itself.

T-lymphocytes (T-cells)White blood cells produced by the thymus gland in the upper chest. There are many different types of T-cells, all with different jobs in the immune system.

Trigeminal neuralgiaBrief attacks of severe pain involving the trigeminal nerve. Pain is usually felt in the region of the cheek or jaw.

Visual evoked potentials (VEPs)A way of testing the conduction efficiency of the optic nerve, enabling identification of abnormalities. Delayed conduction can be a further indication of demyelination.

VirusA tiny organism which can exist only in other living cells and is capable of causing disease.

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USEFUL RESOURCESPlease contact your local MS Society to discuss your specific information needs

Up-to-date information and resources about MS are available from the MS Societies for anyone with a question about MS and the many related issues.

Resources are provided in a number of formats and may include the loan of a book, an up-to-date published article, an in-house handout, a video or a suggested link to online information and can be collected in person, sent in the post or by email as suitable.

Specifically tailored information packs are available for people newly diagnosed with MS. Resources are also available for their families, friends and carers; people already living with MS; people wanting information about a specific aspect or symptom of MS; health professionals; students at all levels of education, and the general public.

Our publications include regular magazines keeping people living with MS up-to-date on research and lifestyle issues; MS Society annual reports; flyers about MS Society programs; information sheets; readings lists on specific aspects of MS; booklets and websites.BOOKLETSMS The Mystery Disease. Sydney: MS Australia. Revised 7th edition January 2005 Updated February 2010

What Everyone Should Know About MS. Sydney: MS Australia. Updated February 2010

WEBSITESMS Australia (includes links to each state MS Society)www.msaustralia.org.au

MS Research Australiawww.msra.org.au

Multiple Sclerosis International Federation – World of Multiple Sclerosiswww.msif.org/en

National MS Society (USA)www.nmss.org

To obtain these or any other information and resources about MS please contact your local MS Society (contact details inside back cover).

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NOTES:

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NOTES:

MS AustraliaMS Information Line: FreecallTM 1800 042 138W: www.msaustralia.org.au

MS Australia – ACT/NSW/VICE: msconnect@msaustralia.org.auW: www.mssociety.org.au

ACT OfficeGloria McKerrow House117 Denison Street Deakin, ACT 2600P: (02) 6234 7000

Sydney OfficeStuddy MS Centre80 Betty Cuthbert Drive Lidcombe, NSW 2141P: (02) 9646 0600

Melbourne OfficeThe Nerve Centre54 Railway Road Blackburn, Victoria 3130P: (03) 9845 2700

MS Australia – QueenslandE: info@msqld.org.auW: www.msaustralia.org.au/qld 286 Gladstone Road Dutton Park, Queensland 4102P: (07) 3840 0888

MS Australia – SA & NTE: ms@ms.asn.auW: www.ms.asn.au 110 Reservoir Road Modbury, SA 5092P: (08) 8396 0044

MS Australia – TasmaniaE: aboutus@mstas.org.auW: www.msaustralia.org.au/tas 15 Princes Street Sandy Bay, Tasmania 7005P: (03) 6220 1111

Multiple Sclerosis Society of Western AustraliaE: enquiries@mswa.org.auW: www.mswa.org.au 29 Parkhill WayWilson, WA 6107P: (08) 9365 4888

Multiple Sclerosis Research AustraliaInformation Line: 1300 356 467E: info@msra.org.auW: www.msra.org.au 293 Mowbray RoadChatswood, NSW 2067P: (02) 9468 8390

www.msaustralia.org.au