Multiple sclerosis | Wharanga uwhi iaia

Video: What is MS?

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(Multiple Sclerosis Society, NZ, 2022)

What causes MS?

The exact cause of MS is unknown, although it is thought to be an autoimmune condition, in which the body's immune system attacks itself, without any real known cause or reason. 

In people with MS, something triggers the destruction of myelin – a fatty substance that coats and protects nerve fibres in your brain and spinal cord. The damaged myelin forms scar tissue (sclerosis). Often the nerve fibre is also damaged.

When any part of the myelin sheath or nerve fibre is damaged or destroyed, nerve impulses travelling to and from your brain and spinal cord are distorted or interrupted. This causes weakening and deteriorating of a wide range of bodily functions. 

In New Zealand, about 1 in every 1,000 develops MS. It is more common in certain groups.

• Young adults: MS can affect anyone at any age, but most people with MS experience their first symptoms and are diagnosed between the ages of 20 and 40 years (usually around the age of 30).
• Women: Women are affected about twice as often as men, but men who develop MS will often be more severely affected by disability.
• Caucasians: MS is more common in Caucasians (people with ancestry from Northern Europe) than any other racial group. It is rarely found in Māori and Pasifika people and is uncommon in Asian people.
• Close relatives: MS is not strictly an hereditary condition, but close relatives of those with MS have an increased chance of developing it. Having a first-degree relative, (mother, father or sibling) with MS increases the chances of having it to 30 in every 1,000.
• Smokers: Smoking is associated with an increased occurrence of MS. Women who smoke are 1.6 times more likely to develop MS than women who are non-smokers. Also, people who smoke appear to be at a much greater risk of a quicker progression of the condition.
• Exposure to the Epstein-Barr virus: This is the virus that causes glandular fever (also known as mononucleosis or mono). Exposure to this virus later in life is associated with an increase incidence of MS. 

The symptoms of MS are unpredictable and are different in different people. The symptoms may also vary in the same person from time to time as different areas of the brain and spinal cord become affected. 

Common early symptoms 

You usually experience more than one symptom but not necessarily all of them. MS typically begins with a sudden episode of neurological symptoms. Symptoms more likely to occur earlier in the disease include:

• problems with vision, such as blurred or double vision, or pain behind your eye
• muscle spasms
• muscle or nerve pain such as tingling, stabbing or burning pains over parts of your skin 
• weakness or lack of coordination of your limbs
• extreme tiredness or fatigue that can affect balance and concentration.

You may have a brief worsening of symptoms due to heat, such as when exercising or bathing.

Other common symptoms

Other common symptoms that progress over time include:

• bladder and bowel problems such as urinary retention and constipation
• problems with sexual performance
• speech and swallowing problems
• mood swings and depression
• thinking, concentration and memory problems. 

Relapsing-remitting MS

This is seen in 8.5 out of 10 people with early-stage MS. It involves recurrent acute episodes (relapses), with symptoms suddenly increasing or new symptoms developing. This is followed by periods in which symptoms improve or even disappear altogether (remissions). 

Secondary progressive MS

This develops in 2 out of 3 people with relapsing-remitting MS within 15 years of diagnosis. This is a gradual, progressive worsening of neurological functioning regardless of whether you have any acute relapses. 

Primary progressive MS

This occurs in 1 out of 10 people with MS. Neurological symptoms develop progressively from the outset, usually with slowly increasing lower limb weakness. 

Clinically Isolated Syndrome (CIS)

If you only have one episode or symptom it is hard to predict which category you will fall into. You may or may not go on to one of the other categories.

Progressive Relapsing MS (PRMS)

This is the least common type of MS, with only 5% of people falling into this group. This is when the condition shows clear progression but also acute attacks with or without full recovery.

MS is not always easy to diagnose because symptoms may come and go. Also, other brain and spinal cord conditions have some of the same symptoms. A complete neurological exam and history of symptoms are needed to diagnose MS.

There is no single test that can confirm or rule out MS, but your doctor may carry out the following tests:

• blood tests to rule out other conditions with similar symptoms
• MRI (magnetic resonance imaging) of your brain and spinal cord, but changes are not specific for MS and age-related changes may cause confusion
• lumbar puncture, where some of the fluid that surrounds your brain and spinal cord is analysed to see if certain protein levels are altered (although they can be altered in other conditions too)
• Evoked potential (EP) tests – recordings of your nervous system’s electrical responses to the stimulation of specific sensory pathways, such as vision in the case of visual EPs.

Currently, there is no cure for MS, but there are medications that can slow down how fast your MS gets worse and help to ease symptoms as they arise.

The various treatment options aim to:

• prevent relapses 
• treat relapses 
• ease certain symptoms
• minimize disability by rehabilitation

Preventing relapses (disease-modifying therapies)

Disease modifying therapies (DMTs) control or modulate your immune system and have been shown to reduce the number and severity of relapses in some people. They can slow down how fast your MS gets worse. DMTs only work if there’s active inflammation in your brain or spinal cord. By changing how your immune system behaves, DMTs can make it less likely to attack the nerves in your brain and spinal cord, resulting in less inflammation and less new damage to your nerves. But if you have nerves that have suffered permanent damage, a DMT can’t repair that.

The following are examples of DMTs that are available in New Zealand. These medicines are currently funded by Pharmac:

• Fingolimod capsules (Gilenya®)
• Teriflunomide tablets (Aubagio®)
• Dimethyl fumarate capsules (Tecfidera®)
• Natalizumab injection (Tysabri®)
• Glatiramer acetate injection (Copaxone®).
• Ocrelizumab injection (Ocrevus®).

If you have relapsing MS, it’s best to start DMTs early – evidence shows that a DMT works better the earlier you have it. The sooner you have a DMT, the less your brain and body is likely to suffer damage. Damage caused by MS builds up over time and can be happening between relapses.

Only a neurologist can start you on a DMT. They will assess numerous factors such as how active your MS is, how many relapses you’ve had in the last year or two, how bad they were and if you’ve tried another DMT but it didn’t work for you.

Treating relapses

Steroids such as methylprednisolone or prednisone are used to treat acute flare-ups. They can be taken either orally or intravenously and is usually given as a high dose for a few days. Steroids can shorten the length of an attack and lessen its severity. Steroids work by reducing inflammation.

Easing symptoms

People with MS may experience a variety of symptoms, and these are treated as they arise. Treatment will vary and depend on how severe the symptoms are. Examples are:

• anti-spasm medicines to ease any muscle spasms
• painkillers are sometimes needed such as for nerve pain.
• medicines which can help with some bowel and bladder problems that may develop
• antidepressant medicines which are sometimes advised if you develop depression
• medicines which can often help with erectile problems which may develop.

Rehabilitation

Rehabilitation tries to improve lost function, usually after an exacerbation (or acute attack). 

During remission periods, it's best to participate in a maintenance therapy programme to achieve and sustain optimum physical condition.

This may involve physiotherapy, stretching, coordination exercises, speech and swallowing instruction. It may also include medication, good nutrition and counselling. There may be the need for lifestyle changes (both social and occupational).

Maintaining a healthy lifestyle will help your body cope with MS and give you the best chance of living well. 

Exercise

There is good evidence that regular exercise improves overall health and energy levels. Keep active but rest when you need to. Don’t over-do it as this may make your symptoms worse and cause an acute flare.  

Healthy eating

Eat a balanced diet to stay healthy and keep your energy levels up. There is no evidence that any particular diet changes the course of MS. 

Temperature control

Avoid situations where your body can overheat, such as saunas, spas or hot tubs. This could increase tiredness and may make your symptoms worse. 

See also these tips for managing MS(external link)

Most people with multiple sclerosis have a normal or near-normal lifespan, but MS symptoms can impact your quality of life. 

Because MS affects people in different ways, it’s difficult to predict the outlook for each individual. There are currently no tests to predict how MS will progress in a person. 

• Most people with MS will be able to continue to walk and function at their work for many years after their diagnosis. 
• About 1 in every 5 people with MS have no symptoms or develop only mild symptoms after an initial event.
• Another 1 in every 5 people experience a rapid progression of symptoms.
• Research has shown that 20 years after diagnosis, about two-thirds of people with MS continue to walk and do not need a wheelchair, although many of them may use a cane or crutches for walking assistance. Some patients use an electric scooter or wheelchair to help cope with fatigue or balance problems. 

It can be difficult to adjust to a diagnosis of MS, partly because of its unpredictability. Talk to your family, friends and doctor about how you are feeling. You can also get support from a counsellor or therapist(external link) 

The MS Society(external link) can put you in contact with a regional field officer who can offer support and information. The range of services offered varies between regional societies. 

Video: Multiple Sclerosis Awareness - Life with MS - Multiple Sclerosis New Zealand

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(Multiple Sclerosis Society, NZ, 2016)

Video: 'MS does not define who I am' - MS Awareness Video

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(Multiple Sclerosis Society, NZ, 2016)

Video: Overcoming MS: Dr White's Personal Journey Towards Better Health with MS | Episode 8 of 15

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(Multiple Sclerosis Society, NZ, 2020)

Watch more videos from the NZ Multiple Sclerosis Society here(external link).

Resources

Multiple sclerosis – managing shades of grey(external link) BPAC, NZ, 2013
Multiple sclerosis in adults – management(external link) NICE Guidance, UK, 2014
GP guide for MS relapse management(external link) Auckland District Health Board, NZ
Brain health in multiple sclerosis – a nursing resource(external link) MS Brain Health, 2017
Helping you explain MS – a teaching resource for healthcare professionals(external link) Multiple Sclerosis Society, UK, 2004
Multiple sclerosis – the quick guide for hospitals, residential homes and nursing homes(external link) Multiple Sclerosis Society, UK, 2011
Multiple sclerosis – a NZ perspective by Dr Deborah Mason(external link) Multiple Sclerosis Study Group, University of Otago & NZ Brain Research Institute, NZ, 2012 
Alla S, Mason DF. Multiple sclerosis in NZ(external link) Journal of Clinical Neuroscience.2014;21:1288–1291.
Decisions relating to multiple sclerosis treatments(external link) Pharmac, NZ, 2014
Atlas – multiple sclerosis resources in the world(external link) World Health Organization, 2008
Updated McDonald Criteria expected to speed the diagnosis of MS and reduce misdiagnosis(external link) National Multiple Sclerosis Society, US, 2017

Continuing professional development

Video: MS and neuroimmunology, Dr Jennifer Taylor (36 minutes)

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(PHARMAC Seminars, NZ, 2019)

Neurology updates (6 videos)(external link) PHARMAC Seminar Series, March 2015
Understanding multiple sclerosis online course(external link) University of Tasmania, Australia, 2020