What is MS
What is Multiple Sclerosis (MS)?
Multiple sclerosis is a chronic, neurodegenerative condition that affects the Central Nervous System (CNS). The body’s own immune system attacks the protective sheath of fatty protein, called myelin, which surrounds the nerves in the brain, spinal cord and the optic nerve. MS is the most common acquired chronic neurological disease affecting young adults, often diagnosed between the ages of 20 to 40.
There is no known single cause of MS, but many genetic and environmental factors have been shown to contribute to its development. In MS, the body’s own immune system mistakenly attacks and damages the fatty material – called myelin – around the nerves. This results in a range of symptoms, but no two people experience MS in the same way.
As the myelin breaks down during a MS attack – a process called demyelination – patches of nerves become exposed and then scarred, which render the nerves unable to communicate messages properly and at risk of subsequent degeneration. This means that the brain cannot talk to other parts of the body, resulting in a range of symptoms that can include a loss of motor function (e.g. walking and hand and arm function, loss of sensation, pain, vision changes and changes to thinking and memory).
Quick MS Facts
MS is the most common degenerative neurological condition diagnosed in young Australian adults (people aged 20-40)
MS affects more women than men at a ratio of 3:1
MS is not contagious
Medications are available to reduce the frequency and severity of relapses in relapsing remitting MS
The majority of people diagnosed with MS do not become severely disabled
Smoking can both increase your risk of MS, and speed up the condition
The Most Common Symptoms of MS
Multiple Sclerosis (MS) has many symptoms, which can be variable and unpredictable. Here are some of the most common symptoms people would experience.
What Causes MS?
It is not yet know what causes multiple sclerosis, or why it affects one person and not another. As a result, people living with MS are often faced with uncertainty about the future There is no one test which says a person has MS. Unfortunately, at times the process can be difficult and time consuming, as each person’s case of MS is different, and can present with different and often vague symptoms.
How is MS diagnosed?
By its very name, multiple sclerosis (where ‘sclerosis’ means scarring) suggests that there are multiple lesions or scars. To clinically diagnose MS, there needs to be evidence of not only multiple attacks at different locations in the CNS, but also that these occurred at different times. While this might sound easy to determine, there is still no single clinical test to provide a definitive diagnosis. Therefore, a careful combination of clinical examinations, MRI scans and lumbar punctures are required.
Three Main Types of MS
Relapsing Remitting MS
Relapsing Remitting MS is the most common form of MS. About 85% of people with MS are diagnosed with RRMS. It is caused by flare ups or exacerbations of the neurological symptoms of MS, also known as relapses, followed by periods of recovery or remission.
For some people, before a diagnosis of RRMS is made, they may be first diagnosed with clinically isolated syndrome (CIS). This is essentially the first presentation of MS (the first relapse), but a diagnosis cannot be confirmed until a second episode occurs, or new lesions develop in the central nervous system to fulfill the “multiple” component of MS. It is caused by inflammation and demyelination in the central nervous system, but not everyone who experiences CIS will develop MS. It is unknown why CIS develops into MS for some people and not for others.
Secondary Progressive MS
Secondary Progressive MS is a secondary phase of relapsing remitting MS that can develop years to decades following the initial onset of symptoms. SPMS is characterised by a reduction in relapses and a progressive worsening of symptoms (accumulation of disability) over time, with no obvious signs of remission.
Primary Progressive MS
Primary Progressive MS is diagnosed in approximately 10-15% of people with MS. PPMS is characterised by a progressive worsening of symptoms and disability right from the beginning, without periods of recovery or remission. Relapses for most people are possible, but not common. Additionally, there can be periods of “plateau” where progression can stabilise for a period of time.
Relapsing Remitting MS
Relapsing Remitting MS is the most common form of MS. About 85% of people with MS are diagnosed with RRMS. It is caused by flare ups or exacerbations of the neurological symptoms of MS, also known as relapses, followed by periods of recovery or remission.
For some people, before a diagnosis of RRMS is made, they may be first diagnosed with clinically isolated syndrome (CIS). This is essentially the first presentation of MS (the first relapse), but a diagnosis cannot be confirmed until a second episode occurs, or new lesions develop in the central nervous system to fulfill the “multiple” component of MS. It is caused by inflammation and demyelination in the central nervous system, but not everyone who experiences CIS will develop MS. It is unknown why CIS develops into MS for some people and not for others.
Secondary Progressive MS
Secondary Progressive MS is a secondary phase of relapsing remitting MS that can develop years to decades following the initial onset of symptoms. SPMS is characterised by a reduction in relapses and a progressive worsening of symptoms (accumulation of disability) over time, with no obvious signs of remission.
Primary Progressive MS
Primary Progressive MS is diagnosed in approximately 10-15% of people with MS. PPMS is characterised by a progressive worsening of symptoms and disability right from the beginning, without periods of recovery or remission. Relapses for most people are possible, but not common. Additionally, there can be periods of “plateau” where progression can stabilise for a period of time.
MS Treatments
Disease modifying therapies (DMTs):
Also known as immunotherapies, DMTs modify immune system activity to reduce the frequency and severity of attacks on the brain and spinal cord. These medications are most commonly prescribed for relapsing remitting MS, where they have been shown to have the greatest impact.
Corticosteroids:
Used during acute relapses, corticosteroids help reduce inflammation at the affected site, providing symptom relief during flare-ups.
Symptomatic treatments:
These address specific symptoms of MS, such as incontinence, muscle spasticity, pain, or depression, improving quality of life by targeting particular challenges associated with MS.
Medications
Aubagio®
Aubagio® (for RRMS) has been shown to reduce the frequency...
Betaferon®
Betaferon® (for RRMS) has been shown to slow down activity..
Copaxone®
Copaxone® (for RRMS) has been shown to reduce activity...
Gilenya®
Gilenya® (for RRMS) has been shown to reduce frequency...
Kesimpta®
Kesimpta® (for relapsing MS) has been shown to reduce chance...
Lemtrada®
Lemtrada® (for RRMS) has been shown to reduce frequency....
Mavenclad®
Mavenclad® (for RRMS) is used to reduce inflammation in the nervous...
Mayzent®
Mayzent® (for SPMS) is used to reduce immune attacks on nerve..
Ocrevus®
Ocrevus® (for RRMS and PPMS) is used to slow progression...
Plegridy®
Plegridy® (for RRMS) has been shown to slow down activity...
Tecfidera®
Tecfidera® (for RRMS) can reduce frequency of relapses..
Tysabri®
Tysabri® (for RRMS) is used to slow progression of MS....
Zeposia®
Zeposia ® (for RRMS) has been shown to protect against attacks....
Living with MS
Exercise & Nutrition
Aerobic, resistance and balance exercises are beneficial for most, if not all, chronic health conditions. Exercise can help slow the progression of disability by maintaining your strength, flexibility, balance and coordination. It has also been shown to elevate your mood, and even contribute to the stimulation of the growth of new brain cells.
The main challenge people with multiple sclerosis (MS) face when exercising is managing symptoms such as fatigue, heat intolerance, weakness, and pins and needles.
Good nutrition, potentially, plays a positive role in the management of MS. Research is revealing positive effects of omega-3 fatty acids, vitamin D, folate and a healthy, low fat diet.
There is no evidence to support any particular diet as a treatment, or cure for MS. We advise that you source additional information, and seek advice from your GP, neurologist, or dietician, before starting any diet that eliminates certain food groups.
Family & Relationships
Relationships with family, partners, friends and others may change when you are diagnosed with multiple sclerosis. MS affects the whole family, and it can sometimes be difficult to discuss the changes that the condition brings. For the children of people with MS, it can be difficult to decide when to tell them, to discuss their feelings about the diagnosis, and how it affects them.
MS has been likened to an unwelcome visitor in the home, disrupting the family dynamics and schedule. In addition, each family member will have different ways of coping with this unplanned change. It’s important to recognize that while dealing with your own diagnosis of MS can be very difficult, it can also be hard on other family members whose coping strategies may differ from yours. Open communication and mutual understanding can help resolve some of the misunderstandings, or difficulties, that may arise.
Work & Education
Many people with MS continue to work and/or study comfortably and productively in their chosen field. In the event that symptoms begin to interfere with your productivity, or ability to perform your role, there are a number of options available. Our Occupational Therapists can provide some information and advice for people living with MS.
Therapies
We recognise that a number of therapies may be helpful in managing aspects of MS, when used in conjunction with conventional treatments. Many people with MS find that one or more of these therapies may ease some symptoms. They can also have positive psychological benefits and improve a person’s sense of wellbeing.
When you feel you have lost control of your body, just knowing that you can do something for yourself is often a positive step.
Thinking & Memory
MS causes changes to parts of the brain that may affect a person’s capacity to think, concentrate, organise, remember and solve problems. These changes can create stress at home and in the workplace; they are an “invisible” symptom, and can be difficult for others to understand.
Children & MS
Each family is unique, and each person’s MS experience is different. There is no right or wrong way to talk about MS with children, and no ideal time.
Whether you should tell your children you have MS, when, and how to do it, are common dilemmas for parents. How much information you give them will depend on their age, and how you feel they might react.
Not wanting to distress or worry them unnecessarily, is a common reason for not saying anything. It’s a very personal decision. It is often helpful to start with small amounts of information and gradually build up. Regardless of the ages of your children, the book “Talking with your kids about MS” is a parent’s guide on how to raise the subject, some things children may want to know, and other parents’ experiences. We recommend you speak with a MSSANT Nurse for more information on how to discuss your diagnosis with your children.
Children who have MS
Whilst the majority of people diagnosed with MS are aged between 20 and 50 years, there is an increasing number of children being diagnosed with early onset MS, aged between 10 and 16. Globally, this amounts to only a small percentage of all cases diagnosed.
In the under 10 age group the incidence is higher in boys, but over the age of 10 girls are more frequently affected (as with adults). Fortunately, the current treatments used for adults are also effective for children.
Ageing & MS
The latest evidence shows that generally, the life expectancy of people with MS is similar to those without the condition. Many people with MS will face the normal age-related changes in their life and health, in addition to those resulting from their MS.
Potentially, two major differences between those ageing with MS, and those without, include leaving employment earlier and needing more assistance over time.
MSSANT Nurses have experience with working with ageing adults and people with MS. They can advise on issues such as quality of life, coping, symptom management, education and disability.
