Multiple sclerosis (MS)

What is multiple sclerosis (MS)?

Multiple sclerosis (MS) is a chronic (ongoing) and complex disease in which your body’s immune system mistakenly attacks itself. This is known as an autoimmune response.

With MS, the immune system attacks and damages the fatty material (myelin) that insulates the nerves of your central nervous system (the brain, spinal cord and optic nerves). This is known as demyelination.

Healthy myelin acts like the covering of an electric cord. It protects your nerve fibres and allows them to transmit impulses (messages) quickly and effectively.

Demyelination causes inflammation and scarring (multiple sclerosis means ‘many scars’). The formation of these scars, known as plaques or lesions, affects your nerves’ ability to transmit messages between your brain and other parts of your body.

Whilst there is not yet a cure for MS, researchers are making promising progress and discoveries about the treatment and management of MS every day.

Everyone experiences MS differently

Demyelination can occur anywhere in the central nervous system. For this reason, everyone’s experience of MS is unique. People with MS can experience a wide range of symptoms, and can be affected differently at various stages in their life.

After demyelination occurs, the brain works to repair the tissue and resolve the inflammation. While doing so it can redirect messages to other parts of your brain. It is a bit like travelling on a highway and being redirected to take an alternative road or path due to roadworks.

Even though the brain works to repair damaged tissue, the repair is often incomplete, and some nerve tissue is irreversibly destroyed. Over time, this leads to a decrease in brain volume, known as brain atrophy.

Healthy adults have a small amount of brain atrophy due to natural ageing, but in many people with untreated MS, brain atrophy occurs at a much faster rate. Current MS treatments aim to prevent new central nervous system lesions forming that lead to irreversible damage and brain atrophy. Current research is focused on finding ways to repair the damaged myelin and help prevent MS symptoms.

Watch this Jumo Health and MS Australia video about living with MS.

MS is a common disease

MS is common:

• Over 2.8 million people live with MS worldwide.
• There are over 25,600 people living with MS in Australia.
• On average more than 10 Australians are diagnosed with MS every week.
• 3 quarters of all people with MS are women.
• Multiple sclerosis is the leading cause of disability in young adults.
• Diagnosis of MS mostly occurs between the ages of 20 and 40 years, although children can also be diagnosed with the disease.

Types of MS

MS can progress in different ways. Knowing the type of MS you have can help you understand the course your MS is likely to take, and help you make informed treatment decisions.

The different types of MS are:

• Relapsing remitting MS (RRMS) – this type of MS is the most common. It is characterised by clearly defined attacks (called active disease activity) followed by periods of complete or partial recovery (referred to as non-active disease activity, or remission). During periods of remission the disease does not appear to progress. At this time, all symptoms might disappear (non-worsening), or some might continue or become permanent (worsening). Approximately 85% of people with MS are initially diagnosed with RRMS.
• Secondary progressive MS (SPMS) – this type of MS is diagnosed when an initial relapsing remitting (RRMS) phase is followed by a ‘progressive’ phase in which the disease progresses and continually worsens. Attacks and partial recoveries may continue to occur throughout this phase. The process of changing from RRMS to SPMS can be a challenging time in the diagnosis for both the patient and neurologist, as it does not follow a predetermined path and can be difficult to pinpoint. For most people, the process takes many years and for others, many decades.
• Primary progressive MS (PPMS) – this type of MS is diagnosed when the condition follows a progressive (continually worsening) course from the beginning. It is characterised by increasing disability, usually without periods of remission (recovery) or acute attacks. 10– 15% of people with MS are diagnosed with PPMS.

You may also hear your neurologist speak about your MS being active or inactive/not active, often in relation to decisions regarding your treatment. Active disease refers to new lesions leading to clinical relapses, new MRI (magnetic resonance imaging) findings or progression of disease. Inactive or not active disease means your MS is stable with no evidence of current disease activity.

Symptoms of MS

The symptoms of MS are varied and unpredictable, depending on which part of the central nervous system is affected and to what degree. No 2 cases of MS are the same.

Symptoms may vary from day-to-day and symptoms can also interact with each other. The symptoms of MS can be both visible and invisible to others.

Some of the most common MS symptoms involve:

• Motor control – difficulties with walking, balance or coordination, muscle spasms or tremors, muscle weakness, slurring or slowing of speech, swallowing difficulties, dizziness or vertigo.
• Fatigue – extreme tiredness, often in combination with heat sensitivity which can impact on your physical, emotional and mental abilities.
• Sensory issues – visual disturbances (such as blurred or double vision or changes in depth perception, partial or complete sight loss), altered sensations such as pins and needles or numbness, neurological pain, sensitivity to heat or cold, or discomfort.
• Bladder and bowel dysfunction – including incontinence (leakage from the bladder or bowel), needing to urinate more or less often, urgency, needing to urinate frequently during the night, constipation or diarrhoea.
• Sexual dysfunction – can be directly related to MS lesions or be as a result of other symptoms.
• Cognitive symptoms – including ‘brain fog’, impaired memory and concentration, changes in processing speed and ability, impaired cognitive function.
• Mood symptoms – such as personal and emotional changes, anxiety, depression and difficulties sleeping.

MS is a chronic disease requiring constant adjustment, management, monitoring and resilience. Similarly, it affects and impacts on those around you in different ways at different times.

Watch this MS Australia animation about the invisible symptoms of MS.

What causes MS?

There is no single cause of MS, however studies have found a complex interaction between genetics, environment and lifestyle factors:

• Genetics – several genes are believed to play a role in the susceptibility to develop MS, in addition to other environmental factors.
• Infection – a variety of viruses have been linked to MS, including Epstein-Barr virus, the virus that causes glandular fever.
• Geographical location – MS is more common in areas further from the equator. This is referred to as the latitudinal gradient. The reasons for this are still unclear. There is a possible link to exposure (or lack of exposure) to ultraviolet light.
• Vitamin D – numerous studies have shown a correlation between vitamin D levels and MS. Low levels of vitamin D may increase the risk of developing MS and may also negatively impact on outcomes once someone is diagnosed.
• Smoking – smoking significantly increases your chances of developing MS or experiencing progression of your MS.

How is MS diagnosed?

Diagnosing MS can be difficult, as some of the early symptoms (such as fatigue, stumbling, unusual sensations, slowed thinking or problems with eyesight) can also be caused by several other health conditions. There is no single test for MS.

If your doctor or neurologist thinks you may have MS, they will refer you to a specialist MS neurologist. Specialist MS neurologists have access to the latest diagnostic tools and facilities, and an experienced MS healthcare team. This team can help you understand your new diagnosis, treatment and management options.

Tests to diagnose MS include:

• Neurological examination – this involves testing the cranial nerves to detect possible areas of damage from MS lesions, looking at your reflexes, your muscle strength, the feel of sensations and your vision. You may also have your walking speed and style assessed as part of this physical examination.
• Blood tests – mainly to rule out other causes of your symptoms.
• Magnetic resonance imaging (MRI) – to look for scarring (plaques or lesions) in your brain and spinal cord.
• Lumbar puncture – to test your cerebrospinal fluid (CFS). CFS examination can support MRI findings and help rule out other diseases.
• Neurophysiology tests – to measure the electrical activity of the brain to detect possible lesions which may not be seen on an MRI. Tests such as ’evoked potentials’ follow impulses as they pass through nerves and can be assessed on your eyes, your ears or your peripheral nerves.

If lesions or scarring are found on the brain or spine MRI, to confirm a diagnosis of MS a neurologist will look for evidence that the scarring happened at different points in time (often referred to as ‘disseminated in time’) and in different parts of your central nervous system (referred to as ‘disseminated in space’). This forms the basis of international guidelines to help neurologists diagnose MS accurately, called the McDonald criteria.

To achieve the best possible outcomes for people with MS, it is recommended that delays in diagnosing MS be minimised and that goals for treatment and ongoing management of MS be set early in the course of the disease.

Being informed about MS will enable you to participate in decision-making about your treatment. Research has shown that a collaborative decision-making process between patient and healthcare provider leads to the best health outcomes.

What are MS relapses?

A relapse is a relatively sudden episode of either a new symptom or a worsening of an existing symptom that:

• continues for longer than 24 hours
• cannot be explained by other causes (such as an infection or overheating)
• is separated from the previous attack by at least 30 days.

Relapse symptoms can evolve over one to 7 days. They can then plateau (reach a state of little or no change) for several weeks. It can then take months for your body to recover. How often you have a relapse, and how severe they are, can be variable and unpredictable.

If you think you are experiencing a relapse, notify your MS healthcare team, neurologist or MS nurse as soon as possible. They will be able to guide you through the relapse and provide you with supportive treatment such as medications and allied health care involvement/rehabilitation, if this is required.

Use a diary to keep a record of your symptoms. Accurate patient information is useful to your doctor in treating and managing your MS. A relapse might indicate that your treatment is no longer suitable.

Due to the episodic (on-again, off-again) nature of MS and relapses, you and your loved ones might experience a range of emotional responses. Specialised MS support services are available to support you during this time. These include employment advice and support.

How is MS treated?

There are no medications to cure MS, rather they are used to modify the course of the disease. At present there are a total of 16 ‘disease modifying treatments’ (DMTs) registered for use in Australia, including treatments for RRMS, several for SPMS and one for PPMS. Most are covered by the Pharmaceutical Benefits Scheme (PBS). For RRMS, MS treatment aims to:

• minimise relapses
• reduce inflammation
• prevent the formation of new lesions
• minimise brain atrophy
• restore function
• minimise the impact of symptoms on your day-to-day life.

The DMTs can be administered in various ways, by injection, orally by tablet/capsule and intravenously at various time points. There can be significant side effects associated with some of the DMTs, for this reason specialist MS healthcare teams usually manage the DMTs and provide important safety guidance and treatment monitoring for people living with MS and their local health care teams. Studies have shown that early diagnosis and commencement of DMTs can lead to better health outcomes in people living with MS.

Specialist MS healthcare team

If you have been diagnosed with MS your GP will work together closely with the local MS specialist team to provide your care. This team will consist of a neurologist, an MS nurse and a number of other allied health practitioners, if needed, including an occupational therapist, physiotherapist, psychologist and continence nurse.

Your specialist MS healthcare team will discuss with you:

• the aims of treatment
• which treatment might be most suitable for you
• the pros and cons of the different treatments available
• brain health lifestyle changes that you can make to improve your health outcomes.

They will help you establish ways of coping, adapting to and managing your MS. Studies have shown that shared decision-making is a valuable tool in the clinical care of people living with MS. This happens when the MS healthcare team and the patient make treatment decisions together, taking into consideration the values, preferences, life experiences, social and family circumstances and health beliefs of the patient. It is a partnership of care.

MS treatment reviews

Where possible, it is recommended that you have:

• regular treatment follow-ups
• 6-monthly treatment reviews to look at how your current treatment approach is working
• an MRI scan at least once a year – to check for evidence of disease activity.

Brain health lifestyle treatments

There are several things that you can do to keep your brain as healthy as possible, including:

• keeping your weight under control
• adopting a healthy diet
• avoiding smoking
• limiting alcohol intake
• keeping your mind and body as active as possible
• learning some ways to manage stress – MS can cause stress because of its unpredictable nature, but stress in turn can increase your risk of a relapse.

If you have an intolerance or sensitivity to cold or heat that worsens your symptoms, it can be managed by adopting various strategies – talk to your MS healthcare team.

Complementary therapies and MS

Medications and physical therapies can be complemented by other therapies. Be cautious when investigating a complementary therapy and be sceptical of ‘miracle cure’ claims. Always ask your MS healthcare team for advice before starting any complementary treatment, as some complementary treatments may have negative interactions with medications you may be taking.

Where to get help

• Your specialist MS healthcare team (including a specialist MS nurse, a neurologist and other allied health practitioners as needed – for example an occupational therapist, physiotherapist and continence nurse)
• Your GP (doctor)
• MS Australia Tel. 1300 010 158
• MS Limited (Victoria, NSW, ACT, Tasmania) Tel. 1800 042 138