Multiple sclerosis

Multiple sclerosis

What is Multiple sclerosis?

Multiple sclerosis is a disease that damages nerve cells in the brain, spinal cord and optic nerve. It can lead to muscle tingling and spasms, paralysis of limbs, difficulty walking, loss of bladder control and vision problems.

Most people with multiple sclerosis, or MS, are able to enjoy an active life and maintain their independence. However others progressively lose abilities and levels of independence.

Treatments can slow the progress of the disease and help manage symptoms. There is a wide range of services and support available for people with MS in Australia.

Multiple sclerosis is a chronic condition in which a person’s immune system malfunctions and attacks myelin, the fatty sheath that insulates their nerves. It damages myelin around nerve cells in the brain, spinal cord and optic nerve. This creates scars (lesions) that interfere or block the nerve signals that control muscles and other functions. The nerve fibres are also damaged by the disease.

The sheath of protective myelin around the nerves is similar to the rubber coating that insulates an electrical wire. The term ‘sclerosis’ means scarring, and refers to the patches that develop on the damaged nerves. The scarring is visible in magnetic resonance image (MRI) scans and occurs in multiple places, hence the term multiple sclerosis.

Symptoms

People with MS can have a vast range of symptoms, such as:

  • muscle weakness in one or more limbs or the body
  • muscle spasms, especially in the legs
  • difficulty walking
  • chronic tiredness
  • numbness, pins and needles or tingling in the face, body, arms and legs
  • vision problems and pain in the eye
  • pain, which may be chronic
  • trouble with coordination and balance
  • problems with bladder and bowel function
  • sensitivity to heat
  • sexual problems
  • problems with thinking and memory
  • depression and emotional changes.

Very few people get all these symptoms. For many people the symptoms are mild, but some people have a range and severity of symptoms which affect independence and mobility.

Types & Severity

Doctors describe different types of MS. The classification describes what has happened, rather than predicts what will happen.

  • Relapsing-remitting MS is the most common type. People with this type of MS have periods when the condition becomes worse or relapses, followed by other periods when their symptoms improve partially or they recover completely. There may be months or even years when the disease remains quiet or is in remission.
  • Secondary progressive MS is a form of disease when MS symptoms develop steadily, without periods of remission. There may be times when symptoms get better before another attack. Most people with relapsing-remitting MS go on to develop this secondary form within 10 to 20 years.
  • Primary progressive MS is less common. People with this type of MS find the symptoms becomes steadily worse. There are times when they don’t worsen, but they don’t get better. People with this type of MS usually gradually become disabled.
  • Relapsing progressive MS is a form of disease in which people gradually become less independent, with occasional sudden declines.
  • Benign MS affects people with one or two fairly severe episodes early on, but then little change after that.

There is another way of looking at it – that MS is an unpredictable condition. Out of 100 people who have MS, 75 in 100 will lead active and independent lives – half with mild symptoms only, and half with symptoms that affect them but don’t disable them. About 25 in 100 are seriously affected by the condition and need a lot of support. But it is not possible to know at the start which path your life will follow.

Causes

The cause of MS is still unknown, but it is thought to be an autoimmune disease. In essence, your body’s immune system attacks the covering of the nerve cells. The unknown is: why? What triggers the process? That is the subject of much research. 

It is clear that some people are more likely to develop MS than others. You are more likely than others to develop MS if you:

  • carry certain genes
  • have a parent, brother or sister with MS
  • have been infected with particular viruses, such as the Epstein-Barr virus
  • are female
  • are of northern European descent
  • live in the southern part of Australia, rather than the northern
  • smoke.

Although genes play a part, MS is not a strictly inherited condition. If you have MS, your children probably won’t.

Diagnosis

It can take a while to be diagnosed with MS, partly because the symptoms can come and go, and partly because very few symptoms are specific to MS. Also, there is no single test that specifically diagnoses MS.

You will see your GP and probably a neurologist as well. They’ll talk to you and examine you closely. You’re also likely to have a number of tests, such as:

  • MRI scans of the brain and spinal cord
  • evoked potential tests, which measure the electrical activity in the brain when particular nerves are stimulated
  • a lumbar puncture
  • blood tests.

For MS to be diagnosed, you need to have at least two separate attacks of MS-like symptoms at least a month apart. There must also be more than one area of the brain or spinal cord showing lesions or damage to myelin.

Living with Multiple sclerosis

Having MS might have a significant affect on your life, affecting your daily activities, ability to work, family and relationships. Or it might not – everyone is different.

You will probably need time to come to terms with the diagnosis and what it means for you. You are likely to feel a lot of different emotions at different times, including anger, denial, anxiety, depression and more. 

It is a good idea to find out what you can about MS and about the support that is available from organisations such as MS Australia. But take your time and do it at your own pace.

Psychological and emotional support

There is a lot to think about, and a lot to deal with and you may need to look at psychological and emotional support. You might be able to get the support you need from your partner, your family and your friends, but you can also look for support from a professional such as a psychologist, counsellor or social worker.

Diet and lifestyle changes

Eating a healthy diet is important – it can help you feel better. You might be advised to take vitamin D supplements or obtain more naturally by eating foods such as tuna, eggs or sunflower seeds, or by spending more time in sunlight. As MS can cause problems with constipation, eating a high fibre diet and drinking plenty of water each day is often beneficial. You can ask a registered dietitian for advice.

Exercise can help you stay flexible, strengthen your muscles and prevent any problems with posture. You might need to adapt your normal exercise routine. A physiotherapist or exercise physiologist can give you advice on the best exercises for you.

Relaxation, breathing exercises and mindfulness meditation can help reduce stress and ease discomfort or pain. And if you smoke, quitting is very important.

Work

Your condition might not interfere with work, but if it does, then it’s a good idea to talk to your employer. But before you do, take some time to prepare. Read about the rights and responsibilities of both yourself and your employer. Think about possible solutions. Also, think about your privacy and what you’re willing to talk about.

Before talking to your employer, you can:

  • talk to colleagues, friends or other people with MS – see if any of them are in a similar situation, and ask how they have managed it
  • think about how any solutions you suggest could help your employer
  • check if anti-discrimination laws apply in your situation.

Driving

Having MS might or might not affect your ability to drive safely. If you have MS, you are required by law to inform the driving licensing authority in your state. You might then be asked to have a medical review to see if you are able to retain your driving licence.

In some situations, modifying the car can help.

Home modifications and equipment

If lose independence or mobility, you might need adaptations to your home such as the installation of ramps, grab rails and lifting aids or hoists.

There is a wide range of equipment available including manual or electric wheelchairs and computer aids.

Personal and nursing care

There might be times when you need assistance from a personal carer in order to do the tasks of daily living. There might be times when you need nursing care. 

Treatments

There are a number of treatments available that aim to reduce inflammation around the nerves, slowing the progress of the disease and managing symptoms. They also aims to maintain your quality of life.

Ideally, you will be cared for by a multidisciplinary team that changes as your needs change. It could include:

  • doctors such as a GP and a neurologist
  • a physiotherapist to help you remain active and make the most of your muscle strength
  • an occupational therapist who can help you with advice around mobility and independence
  • a social worker, psychologist or counsellor to help you manage both the practical and the emotional aspects of the condition.
  • an MS nurse to help manage medications and symptoms
  • a neuropsychologist to help you manage any changes in thinking
  • a continence nurse or advisor to help with any incontinence or bladder problems.

Medication

There is a range of medicines to help slow the progression of MS and to treat symptoms. Medications can include:

  • immunotherapy drugs which can help reduce the frequency and severity of attacks – they are also known as ‘disease modifying drugs’
  • corticosteroids which can be used to shorten attacks by easing inflammation
  • pain medications
  • medications to address other symptoms such as muscle spasms, tremors, fatigue and psychological problems.

 

Sources

MS Australia (Understanding MS, an introduction for people living with MS, medications and treatments), Mayo Clinic (multiple sclerosis overview), National Multiple Sclerosis Society (MS Symptoms, Diagnois, Types of MS) Healthdirect (Multiple Sclerosis).

Last updated November 2017

Ever since she was old enough to understand adult topics, Martina Wonderley has negotiated the health and social welfare systems on behalf of her older brothers who live with significant disabilities.


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