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 servicesare 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
What are usually the first signs of MS? ›
There are lots of symptoms that MS can cause, but not everyone will experience all of them.
- numbness and tingling.
- loss of balance and dizziness.
- stiffness or spasms.
- bladder problems.
- bowel trouble.
Numbness or Tingling
Numbness of the face, body, or extremities (arms and legs) is often the first symptom experienced by those eventually diagnosed as having MS.
In MS, the immune system attacks the layer that surrounds and protects the nerves called the myelin sheath. This damages and scars the sheath, and potentially the underlying nerves, meaning that messages travelling along the nerves become slowed or disrupted.What is the difference between MS and multiple sclerosis? ›
Although both MS and SS are autoimmune disorders, they are distinct conditions. Multiple sclerosis impacts only the central nervous system, which includes the brain and spinal cord. In contrast, SS is a multisystem disease, meaning it can impact multiple areas of the body.At what age does MS usually begin? ›
MS can occur at any age, but onset usually occurs around 20 and 40 years of age. However, younger and older people can be affected. Sex. Women are more than 2 to 3 times as likely as men are to have relapsing-remitting MS .Does MS show up in blood work? ›
Blood Tests: Currently, there are no definitive blood tests for diagnosing MS, but they can be used to rule out other conditions that may mimic MS symptoms, including Lyme disease, collagen-vascular diseases, rare hereditary disorders and acquired immune deficiency syndrome (AIDS).How can I check myself for MS? ›
- numbness, pain, or tingling.
- vision issues such as blurred vision, trouble seeing, or floaters.
- issues with walking or balance.
- bladder or bowel incontinence.
- unexplained sexual dysfunction.
- mood changes.
- brain fog.
Visual problems are often the first symptoms associated with MS. The optic (eye) nerve can become inflamed (optic neuritis) as the optic nerve is a common area where damage to the protective covering of nerves (demyelination) occurs. More than half of people with MS will experience at least one issue with vision.How long can you have MS Before you know it? ›
Canadian research shows people with MS are more likely than the general population to visit a doctor or hospital in the years leading up to an MS diagnosis.Can I live a normal life with MS? ›
You may have to adapt your daily life if you're diagnosed with multiple sclerosis (MS), but with the right care and support many people can lead long, active and healthy lives.
How do doctors diagnose MS? ›
There are no specific tests for MS . Instead, a diagnosis of multiple sclerosis often relies on ruling out other conditions that might produce similar signs and symptoms, known as a differential diagnosis. Your doctor is likely to start with a thorough medical history and examination.How does MS make your body feel? ›
People may experience blurred vision, double vision, eye pain or loss of color vision. Difficulty articulating words or swallowing and slurred speech may occur if there's damage to the area that controls the mouth and throat.Is multiple sclerosis an STD? ›
20, 2002 — Multiple sclerosis (MS) or susceptibility to MS may be in part a sexually transmitted disease (STD), according to a scholarly review of epidemiologic evidence published in the October issue of the Journal of Neurology, Neurosurgery and Psychiatry .What causes MS flare ups? ›
What causes exacerbations? Exacerbations (relapses) are caused by inflammation in the central nervous system (CNS). The inflammation damages the myelin, slowing or disrupting the transmission of nerve impulses and causing the symptoms of MS.What happens if multiple sclerosis is left untreated? ›
And if left untreated, MS can result in more nerve damage and an increase in symptoms. Starting treatment soon after you're diagnosed and sticking with it may also help delay the potential progression from relapsing-remitting MS (RRMS) to secondary-progressive MS (SPMS).What two parts of the body does MS affect? ›
In people with MS, the immune system attacks cells in the myelin, the protective sheath that surrounds nerves in the brain and spinal cord. Damage to the myelin sheath interrupts nerve signals from your brain to other parts of your body. The damage can lead to symptoms affecting your brain, spinal cord and eyes.Does MS come on suddenly? ›
Most symptoms develop abruptly, within hours or days. These attacks or relapses of MS typically reach their peak within a few days at most and then resolve slowly over the next several days or weeks so that a typical relapse will be symptomatic for about eight weeks from onset to recovery. Resolution is often complete.Are you born with MS or does it develop? ›
Over 200 genes might affect your chances of getting MS. But genes are only part of the story. MS can happen more than once in a family, but it's much more likely this will not happen. There's only about a 1.5% chance of a child developing MS when their mother or father has it (that means around one in 67 get it).Can an eye test detect MS? ›
Diagnosis and early intervention
As optic neuritis is the presenting sign of MS in up to 30 percent of patients, the eye exam can lead to the initial systemic diagnosis.
Magnetic resonance imaging, or MRI, is a wonderful tool to help diagnose and follow people with MS. MRI is safe and relatively non-invasive yet can provide very detailed images of the brain and spinal cord that can reveal MS lesions (also known as demyelination, spots, or plaques) and changes in MS activity over time.
What are four common diagnostic tests for MS? ›
- A comprehensive patient medical history and neurological exam.
- Magnetic resonance imaging of the neuroaxis.
- Evoked Potentials testing.
- Analysis of the spinal fluid.
- vision problems.
- numbness and tingling.
- muscle spasms, stiffness and weakness.
- mobility problems.
- problems with thinking, learning and planning.
- depression and anxiety.
Neuropathic pain happens from “short circuiting” of the nerves that carry signals from the brain to the body because of damage from MS. These pain sensations feel like burning, stabbing, sharp and squeezing sensations. In MS you can experience acute neuropathic pain and chronic neuropathic pain.What is the most common pattern of MS attacks? ›
One of these, the most common form, was relapsing-remitting MS (RRMS). Relapsing-remitting MS is defined as MS in which patients have relapses of MS and periods of stability in between relapses. Relapses are episodes of new or worsening symptoms not caused by fever or infection and that last more than 48 hours.What happens when you first get diagnosed with MS? ›
Understand That MS Symptoms Can Be Unpredictable
Common MS symptoms include numbness or tingling, spasticity, vision problems, walking difficulties, weakness, slurred speech, fatigue, bladder dysfunction, cognitive changes, and more. But these symptoms can be unpredictable.
These include imaging techniques such as magnetic resonance imaging (MRI), spinal taps (examination of the cerebrospinal fluid that runs through the spinal column), evoked potentials (electrical tests to determine if MS affects nerve pathways), and laboratory analysis of blood samples.Can people with MS drive? ›
Many people with MS can drive normally, but others may need adaptive equipment. Some people with multiple sclerosis may have to stop driving altogether for safety concerns. The best way to find out if it's safe for you to drive is to get evaluated by a driving rehabilitation specialist.How long is the life expectancy of MS? ›
Average life span of 25 to 35 years after the diagnosis of MS is made are often stated. Some of the most common causes of death in MS patients are secondary complications resulting from immobility, chronic urinary tract infections, compromised swallowing and breathing.Does life expectancy change with MS? ›
According to the National Multiple Sclerosis Society (NMSS), the lifespan of people with MS has increased over time. But the associated complications cause the average lifespan with MS to be about 7 years shorter than people who don't live with MS.What blood tests are elevated with MS? ›
- elevated levels of antibodies called IgG antibodies.
- proteins called oligoclonal bands.
- an unusually high number of white blood cells.
What are three drugs for multiple sclerosis? ›
- Briumvi™ (ublituximab-xiiy)
- Lemtrada® (alemtuzumab)
- Novantrone® (mitoxantrone)
- Ocrevus® (ocrelizumab)
- Tysabri® (natalizumab)
You might get a shocking, burning, squeezing, stabbing, cold, or prickly feeling out of nowhere. Some people call them zingers or stingers. These zaps usually last only seconds or minutes. They often affect your legs, feet, arms, and hands.What are the three most common early signs of MS? ›
Cognitive changes: The most common cognitive changes related to MS tend to be things like slowed processing (when you need to read things a few times to let them sink in), difficulty finding words, loss of short-term memory, and multitasking problems.What does early MS pain feel like? ›
These pain sensations feel like burning, stabbing, sharp and squeezing sensations. In MS you can experience acute neuropathic pain and chronic neuropathic pain. Acute Neuropathic Pain is sometimes an initial symptom of MS or may be part of an MS relapse. Acute means it has a rapid onset and is of short duration.When should you suspect multiple sclerosis? ›
People should consider the diagnosis of MS if they have one or more of these symptoms: vision loss in one or both eyes. acute paralysis in the legs or along one side of the body. acute numbness and tingling in a limb.Does MS start suddenly? ›
Symptoms. Most commonly, MS starts with a vague symptom that disappears completely within a few days or weeks. Symptoms can appear suddenly and then vanish for years after the first episode, or in some cases never reappear. The symptoms of MS vary greatly and can range from mild to severe.Does MS show up on MRI? ›
Magnetic resonance imaging, or MRI, is a wonderful tool to help diagnose and follow people with MS. MRI is safe and relatively non-invasive yet can provide very detailed images of the brain and spinal cord that can reveal MS lesions (also known as demyelination, spots, or plaques) and changes in MS activity over time.How can a neurologist tell if you have MS? ›
Your neurologist will look for abnormalities, changes or weakness in your vision, eye movements, hand or leg strength, balance and co-ordination, speech and reflexes. These may show whether your nerves are damaged in a way that might suggest MS.
How long can MS go undiagnosed? MS is usually diagnosed between the ages of 20 and 50, but it can go undetected for years. In fact, a 2021 study suggested that many people with MS experience disease symptoms several years before being officially diagnosed with the disease.How fast does MS progress after first symptoms? ›
Most symptoms develop abruptly, within hours or days. These attacks or relapses of MS typically reach their peak within a few days at most and then resolve slowly over the next several days or weeks so that a typical relapse will be symptomatic for about eight weeks from onset to recovery.
Where are MS lesions found? ›
Lesions may be observed anywhere in the CNS white matter, including the supratentorium, infratentorium, and spinal cord; however, more typical locations for MS lesions include the periventricular white matter, brainstem, cerebellum, and spinal cord.Is multiple sclerosis considered a disability? ›
The Social Security Administration (SSA) recognizes MS as a chronic illness or “impairment” that can cause disability severe enough to prevent an individual from working.