Beginner's Guide to Multiple Sclerosis
What is Multiple Sclerosis?
Multiple sclerosis (or MS as it is often called) is a disorder of the central nervous system (CNS) - the brain, spinal cord and optic nerves.
The central nervous system is responsible for our conscious and unconscious functioning including movement and the response to sensations such as sight, touch and hearing. It directs these functions by sending its instructions in the form of electrical impulses to the appropriate sites along nerve fibres. Nerve fibres are coated in a protective insulating covering called the myelin sheath that serves a very similar function to the coating around electrical wires. Myelin is important in speeding electrical conduction along nerve fibres and in insulating nerve fibres from one another.
The term multiple sclerosis refers to multiple areas of scarring (sclerosis) scattered through the brain and spinal cord.
The scars are the result of healing patches of inflammation. These are the basic cause of damage to nerve fibres and of the suddenly appearing symptoms that are referred to as an attack or relapse. Patches of inflammation heal spontaneously over several weeks or months when symptoms may resolve completely or residual impairment may result.
The inflammation causes damage particularly to the insulating myelin sheath covering nerve fibres but also damages the nerve fibres (axons) themselves. In MS the typical damage is often referred to as “demyelinating”. The nature of the symptoms and their severity depends partly on the site of the patch of inflammation (or lesion) and partly on its nature and intensity.
The course of MS varies widely from person to person. Some people will only ever experience mild symptoms over their lifetime while others will have relapses followed by incomplete remission when disability may worsen in a stepwise fashion with each relapse experienced. A number of persons experience slowly progressive worsening of disability over many months or years. There is uncertainty how much of this progressive process is due to low-grade inflammation and how much to loss of previously damaged nerve fibres.
In general three typical patterns of MS can be:
Relapsing-Remitting MS: relapses with a flare up of old symptoms or the development of new symptoms (over several days or weeks) are followed by a remission with resolution or reduction of symptoms.
Secondary-Progressive MS: after an initial course of relapsing/remitting MS there is the development of slowly progressive disability (over many years). In this phase relapses may also still occur.
Primary-Progressive MS: in about 10% of cases, from the beginning, there is slow progressive worsening of symptoms and disability without distinct attacks.
Symptoms of MS
In MS the condition and symptoms are unpredictable and vary from person to person. Symptoms are not only different in different people but typically vary in the same person from time to time as different areas of the central nervous system become inflamed and scarred.
Common symptoms include:
Weakness or in-coordination of the limbs
Impaired balance or instability walking
Blurred or double vision
Impaired urinary or sexual function
Cognitive dysfunction such as impaired memory or concentration
NOTE: a person with MS will usually experience more than one symptom but NOT necessarily all of them.
Who gets Multiple Sclerosis?
In New Zealand, about one in every 1,000 to 2,000 develops MS with approximately 2500 people affected.
It is more common in:
- YOUNG ADULTS: Symptoms usually appear between the ages of 20 and 50 with a peak in the early 30’s.
- WOMEN: Women are affected approximately twice as often as men.
- CAUCASIANS: MS is more prevalent in Caucasians (people with ancestry from Northern Europe), than any other racial group. It is rarely found in Maori and Polynesian people and is uncommon in Asian people.
- NEAR RELATIVES of those with MS have an increased risk. Having a first-degree relative, (mother, father, sibling,) with MS increases the chances of having it from approximately one in every thousand people to 30 in every thousand, but it is important to note that the great majority of people with an affected first-degree relative do not develop MS.MS is not contagious or infectious; it is not possible to contract it from close contact with a person with MS.
What Causes Multiple Sclerosis?
The cause of MS is still not known. Both genetic and environmental factors are important but how they interact to produce episodes of localised inflammation over many years is not clear. MS is widely regarded as an autoimmune disease in which the body produces a misdirected immune system attack on its own tissue (in this case, the myelin sheath that protects the axons), but that has never been firmly established. A reaction to a virus hidden in the central nervous system has been long suspected but also not proven. In persons with MS the immune system appears to be normal in all other respects.MS is not a hereditary disorder in the sense of being passed directly from parent to child. The increased risk in close family members is not attributable to a single gene but is related to several genes whose function is not well understood – some probably influence immune reactions.A striking environmental feature is the increase in prevalence of MS in higher latitudes both above and below the equator. In NZ, for example, the prevalence in the South Island is approximately twice that in the upper half of the North Island. The pattern of migration from Northern Europe may contribute to that distribution but undetermined environmental factors are most important. Among many possibilities, exposure early in life to a virus infection that has a long-term effect on immune responses is thought most likely. However, none of the numerous viruses suspected can be directly linked at present.
How is Multiple Sclerosis Diagnosed?
Ideally, a neurologist or specialist physician should confirm the diagnosis of MS. The basis of a diagnosis of MS remains a careful neurological assessment including analysis of symptoms and physical examination. It depends on the demonstration of typical features and exclusion of other disorders that may produce similar symptoms.
Diagnostic tests have an important role and include: Magnetic Resonance (MR) scanning of the brain and spinal cord. This has been a major advance in the diagnosis of MS but the changes seen are not specific for MS and agerelated changes may cause confusion. Lumbar Puncture to examine the cerebrospinal fluid (CSF). Evoked Potentials which measure electrical conduction through CNS pathways are not commonly used now that MR scanning is widely available.
What Treatments are Available?
While there currently is no ‘cure’ for MS, treatments are available to deal with different aspects of the disease. These can be considered in four main categories.
- Treatment of Relapses Acute flare-ups or relapses are usually managed by the administration of corticosteroids (eg: methylprednisolone or prednisone), which can shorten the duration of an attack and lesson its severity. These can be taken either orally or intravenously
- Disease Modifying Therapy – Preventing Relapses A number of agents generally classed as ‘disease modifying agents’ are now capable of reducing the number of relapses and the development of new brain lesions seen on MR scans. The most widely used are described as immunomodulating agents and include beta-interferon (Avonex®, Betaferon®, and Rebif®), and glatiramer acetate (Copaxone®). These treatments are expensive, must be given by regular injection and must be continued indefinitely to maintain effect. Immune suppressing agents such as mitoxantrone (Novantrone) also have a place. In New Zealand only Betaferon® and Avonex® are currently funded by Pharmac and access to treatment is restricted to persons with frequent relapses and significant residual disability. Your neurologist can advise you if you qualify for this treatment.
- Management of Symptoms Therapy is available to relieve many of the symptoms associated with MS. Treatment options can include physiotherapy and medication.
- Rehabilitation While it may not be possible to improve all lost function, persons with MS should try to optimise their physical, mental and social condition. After an exacerbation there may be the need for rehabilitation. During remission periods people with MS should participate in a maintenance therapy programme to achieve and sustain their 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).
Complementary and Alternative Medicine
Some people believe that if conventional medicine cannot provide a cure for MS, then perhaps alternative medicine will do so. Others find that seeking more holistic therapies allows them to feel they are controlling their MS. Caution should be the keyword, particularly when the use of herbal remedies is being contemplated. A number of these remedies have been shown to interact with prescribed drugs and adverse effects are not uncommon. Specifically a number of these remedies claim to ‘enhance’ the immune system. As the principal problem in MS is an already over enhanced immune response it is particularly important to tell your doctor if you are taking or contemplating taking any ‘natural’ or ‘herbal’ remedies. Some of these can react badly with prescribed drugs and are often promoted by people with little or no understanding of the disease. Some cautions and incompatibilities associated with herbal products have been widely publicised recently and reputable reference sources can be consulted. Medsafe is the New Zealand Medicines and Medical Devices Safety Authority.
It is a business unit of the Ministry of Health and is the authority responsible for the regulation of therapeutic products in New Zealand. Medsafe regulates products used for a therapeutic purpose.
- Related products
- Herbal remedies
- Medical devices
- Controlled drugs used as medicines
Medsafe can provide useful information about particular products and therapies. Contact details for Medsafe and the Ministry of Health are located in the section Sources of Support. The Rocky Mountain MS Centre CAM website can also be helpful if you have internet access, and the MS Society can provide information on specific topics. Be aware that information you read on the Internet or in a newspaper may not necessarily be correct. Be particularly wary of any product or information that claims to be a cure for MS; if it’s genuine and has been scientifically proven, your neurologist will know of it. Don’t forget that MS can go into remission suddenly and ‘miraculously,’ for no apparent reason, so apportioning success to any particular treatment can be misleading.
Adjusting to the Diagnosis
In coming to terms with a diagnosis of MS one of the most difficult aspects is its unpredictability. Receiving a diagnosis of MS can alter the way you look at life. It may make you feel that you have lost control or that your future is uncertain. Don’t despair. Everyone goes through stages of adjusting to major life changes and these processes are entirely normal, although the intensity of feeling and length of those stages will vary from person to person. Some people will feel relief at finally having a diagnosis. Finally they will have an explanation for the puzzling and sometimes frightening symptoms they have been experiencing. More than that they may be relieved to find their symptoms are not caused by a life threatening disease. Others may react differently, becoming fearful of what life will hold. Do they give up their job, alter any plans to start a family or have more children? They may fear the reaction of their partner and family and grieve for their perceived altered relationships. All these feelings are very natural and will become less overwhelming with time and support.
Spreading the News
Don’t be afraid to tell those closest to you about your MS; they will be your strongest supporters. Acknowledge though that they will pass through their own stages of acceptance, just as you will, so try to also be aware of their needs. If you share your feelings about having MS you will find it easier to accept their support and you can grow together in strength and understanding. Children should be told at a level they can understand and this may need to be repeated and expanded on as they grow older. It’s very important that children are reassured that their behaviour has not caused your MS and that it’s not contagious - they can’t catch it from you. You’ll find children tend to be very accepting and love you for who you are. The same can be said for friends. They can do what they do best, be supportive and loving when they know what’s going on. They may have witnessed your symptoms and be already worried about the cause. Remember, everyone’s imagination is almost invariably worse that the reality so put those closest to you out of their misery and confide in them. It’s the relationships in our lives that get us through not only the good times but the difficult, as well. You may have concerns about telling your employers, worrying it could affect your employment. Remember, they are obliged to respect your privacy and not tell others about it. By law you cannot be fired just because you have developed an illness. In many cases employers are very understanding and with consultation may make small but significant changes to your work environment to allow you to keep working productively.
Rest and Exercise
The best thing you can do for yourself is to live a healthy life style that gives you good quality of life. You may be tempted to fall into the trap of thinking that just because there is currently no cure for MS then it doesn’t matter what else you do. It’s simply not true. If you smoke or drink to excess, then you are just as likely to suffer from a range of adverse health effects, regardless of whether you have MS or not. Maintaining a healthy body gives you the best chance of living long and well.
Stay active, with reasonable rest. Recognise fatigue and rest when you need to. This may be short periods with your feet up or one specific time period set aside each day. If you are working it may mean taking an extended break mid-morning and mid-afternoon at your employer’s discretion. Try to avoid pushing yourself too hard as this may make your symptoms temporarily worse. You don’t have to belong to a gym to exercise. Walk, swim, move to music, join an exercise class - whatever you enjoy. There is good evidence that regular exercise improves overall health and energy levels.
While there is widespread belief that diet can alter the course of MS there is no scientific proof to back this up. Eat a sensible diet and you will feel better within yourself but don’t expect it to cure you. Don’t fall into the trap of thinking that you need to swallow bottles of vitamins. In a healthy diet there is no evidence to suggest additional vitamins are necessary or of any benefit; as for any healthy lifestyle, limiting alcohol and caffeine intake is also recommended.
The best way to deal with your life with MS is to be flexible. Try something new; there are many things you can enjoy in life, so concentrate on what you can do rather than what you can’t. Some people may say ‘It’s just not fair!’ No, it’s not, but no one said life has to be. In time you will be able to find a place where MS can fit into your life without allowing it to dominate. You may not believe this to be possible so soon after a diagnosis but it does come with time. Remember, MS can only change you if you allow it to; you’re still the same person today as you were the day before the diagnosis.
Your life with MS will be what you make of it. Just as everyone is unique, everyone’s MS is also unique to them. Neurologists are unable to predict the future as it may take years for a pattern to evolve; in many cases this is only evident after looking back with retrospective evaluation. Although the progress of the disease in any one person cannot be predicted with any accuracy, the statistics are encouraging: Many people with relapsing remitting MS have many years between attacks. Long term disability is more likely to occur in those with secondary progressive MS rather than relapsing remitting MS.
Think carefully before making any major decisions about your life when you are newly diagnosed with MS. This is when you need time to come to terms with it and should try to live as normal a life as possible.Decisions about starting a family or having more children need to be well thought out when you have had time to consider your options.
Pregnancy and Multiple Sclerosis
Because of the typical age of onset of MS, this is often a time when women are starting a family or contemplating having more children. MS should be taken in account just as you would any other factors in this decision.
Several issues arise when people with MS plan to have children:
- A person with MS has as increased risk of having a child who will develop MS but the risk is small and not usually sufficient to dissuade couples from starting a family.
- Relapses are less likely to occur while pregnant, but there is an increased risk of a relapse in the three months following a pregnancy.
- Overall, pregnancy does not have a significant effect on the course of MS.
- Pregnancy is best avoided while taking disease modifying therapies.
- Consult your GP about family planning and pregnancy, particularly if you are taking any medication for your MS.
Sources of Support and Information
Each Regional Society has skilled and experienced Field Workers who, if required, can assist you in finding the services you need, including:
- working with those newly diagnosed with MS on a one-to-one basis
- offering up-to-date knowledge of MS and its management
- providing advocacy and support
- offering counselling or referrals to appropriate agencies
- supporting partners, carers, families, friends, health professionals, employers and workmates
- facilitating groups for people newly diagnosed and their partners, carers, children, workmates
- offering assessment facilitation
- providing social contact, for those who want it, with other people with MS, on either a group or individual basis
- liaising with home-based care providers, community health services, counsellors, health professionals and Work and Income to coordinate client needs
- carrying out mobility assessments
Some MS Societies also offer physiotherapy, yoga classes, hydrotherapy at local pools and access to Riding for the Disabled, as well as assistive devices for daily living.
Click here for contact details for your nearest local society. Meeting people through the MS Society can be very reassuring, as you may be surprised to find how many people have MS that you were unaware of. A lot of people with MS have ‘invisible’ symptoms and lead normal lives. Some people find support groups helpful as an occasion where they can share their experiences and learn how others deal with MS.
Your GP is your main health care provider, so do your best to locate a GP with an interest in MS. It’s important to communicate your worries and symptoms as clearly as possible so you can get appropriate assistance. Your GP will be able to refer you to a neurologist or other specialist (e.g. physiotherapist) if there are questions and concerns. Ideally, the diagnosis of MS should be confirmed by a neurologist or specialist physician.
The following information and referrals are available from your local GP. These are invaluable sources of help, supplies, and governmental funding should you require their services. Not only are they very important; they’re completely free.
Community Occupational Therapist
A Community OT knows how to minimise the difficulties a person with MS may encounter, and how to access funding from regional agencies for aids such as handrails or tools for ease of living and safety around the home. They are able to submit applications to do with mobility and make referrals for vehicle modifications and to Disability Support Link (DSL) who assess and fund personal care and housekeeping hours.
Community Driving Assessor
This person will discuss and approve vehicle adaptations should you require any. If necessary they can arrange for trials of different hand or foot controls and can assist in overcoming a host of vehicle-related difficulties.
Available to provide home visits to help with issues relating to changes in the body. They can advise on exercises and ways of reducing the strain on weakening muscles. Referrals to Speech Therapists, Urology Clinics and any other support services can also be accessed through your GP.
The Internet provides a great deal of information about MS, but the quality and accuracy of the information can vary.