What is MS?

Multiple sclerosis is one of the most common diseases of the central nervous system (brain and spinal cord). MS is an inflammatory demyelinating condition. Myelin is a fatty material that insulates nerves, acting much like the covering of an electric wire and allowing the nerve to transmit its impulses rapidly. It is the speed and efficiency with which these impulses are conducted that permits smooth, rapid and co-ordinated movements to be performed with little conscious effort.

In multiple sclerosis, the loss of myelin (demyelination) is accompanied by a disruption in the ability of the nerves to conduct electrical impulses to and from the brain and this produces the various symptoms of MS. The sites where myelin is lost (plaques or lesions) appear as hardened (scar) areas: in multiple sclerosis these scars appear at different times and in different areas of the brain and spinal cord. The term multiple sclerosis means, literally, many scars.

Quick Facts?

• MS is a progressive disease of the nervous system, for which there is no cure.
• An estimated 2,500,000 people in the world have MS.
• More women than men have MS, with a ratio of 2 men to 3 women affected.
• MS is the most common diseases of the central nervous system in young adults.
• There are four types of MS: benign, relapsing remitting, secondary progressive, primary progressive..
• Sclerosis means scars, these are the plaques or lesions in the brain and spinal cord.
• In MS, the protective myelin covering of the nerve fibres in the central nervous system is damaged.
• Inflammation and ultimate loss of myelin causes disruption to nerve transmission and affects many functions of the body.
• While the exact cause of MS is not known, much is known about its effect on immune system function which may be the ultimate cause of the disease.
• MS is not directly hereditary, although genetic susceptibility plays a part in its development.
• MS is not contagious.
• Diagnosis of MS is generally between 20 and 40 years of age, although onset may be earlier.
• MS is rarely diagnosed under 12 and over 55 years of age.
• Life span is not significantly affected by MS.
• There are a wide range of symptoms. Fatigue is one of the most common.
• The incidence of MS increases in countries further from the equator.
• There is no drug that can cure MS, but treatments are now available which can modify the course of the disease.
• Many of the symptoms of MS can be successfully managed and treated.

Causes of MS

The cause of multiple sclerosis is not yet known, but thousands of researchers all over the world are meticulously putting the pieces of this complicated puzzle together.

The damage to myelin in MS may be due to an abnormal response of the body's immune system, which normally defends the body against invading organisms (bacteria and viruses). Many of the characteristics of MS suggest an 'auto-immune' disease whereby the body attacks its own cells and tissues, which in the case of MS is myelin. Researchers do not know what triggers the immune system to attack myelin, but it is thought to be a combination of several factors.

One theory is that a virus, possibly lying dormant in the body, may play a major role in the development of the disease and may disturb the immune system or indirectly instigate the auto-immune process. A great deal of research has taken place in trying to identify an MS virus. It is probable that there is no one MS virus, but that a common virus, such as measles or herpes, may act as a trigger for MS. This trigger activates white blood cells (lymphocytes) in the blood stream, which enter the brain by making vulnerable the brain's defence mechanisms (i.e. the blood/brain barrier). Once inside the brain these cells activate other elements of the immune system in such a way that they attack and destroy myelin.

Demyelination

Demyelination is the term used for a loss of myelin, a substance in the white matter that insulates nerve endings. Myelin helps the nerves receive and interpret messages from the brain at maximum speed. When nerve endings lose this substance they can not function properly, leading to patches of scarring, or ‘sclerosis’, occurring where nerve endings have lost myelin. It is these areas of scarring that give multiple sclerosis its name.

Demyelination is the root cause of the symptoms that people with MS experience. When it occurs the speed at which messages pass along the nerves is slower than normal. Even when the patches of scarring caused by demyelination have healed and re-myelination has occurred, the response time of the nerve endings tends to remain slower.

Who gets MS? 

Women are more likely to develop multiple sclerosis than men, with MS occurring 50% more frequently in women than in men (i.e. 3 women for every 2 men). Multiple sclerosis is a disease of young adults; the mean age of onset is 29-33 years, but the range of onset is extremely broad from approximately 10-59 years.

Symptoms of MS 

Multiple sclerosis is a very variable condition and the symptoms depend on which areas of the central nervous system have been affected. There is no set pattern to MS and everyone with MS has a different set of symptoms, which vary from time to time and can change in severity and duration, even in the same person.

There is no typical MS. Most people with MS will experience more than one symptom, and though there are symptoms common to many people, no person would have all of them. Common symptoms include:

Visual disturbances 

• Blurring of vision
• Double vision (diplopia)
• Optic neuritis
• Involuntary rapid eye movement
• Total loss of sight (rarely)

Balance & co-ordination problems

• Loss of balance
• Lremor
• Unstable walking (ataxia)
• Giddiness (vertigo)
• Clumsiness of a limb
• Lack of co-ordination
• Seakness: this can particularly affect the legs and walking

Spasticity

• Altered muscle tone can and muscle stiffness can affect mobility and walking
• Spasms

Altered sensation

• Tingling
• Pins and needles
• Numbness (paraesthesia)
• Burning sensations
• Pain may be associated with MS, e.g. facial pain, (such as trigeminal neuralgia), and muscle pains

Abnormal speech

• Slowing of speech
• Slurring of words
• Changes in rhythm of speech
• Difficulty in swallowing (dysphagia)

Fatigue

• a debilitating kind of general fatigue which is unpredictable or out of proportion to the activity. Fatigue is one of the most common (and one of the most troubling) symptoms of MS

Bladder & bowel problems

• Bladder problems include the need to pass water frequently and/or urgently, incomplete emptying or emptying at inappropriate times.
• Bowel problems include constipation and, infrequently, loss of bowel control

Sexuality & intimacy

• Impotence
• Diminished arousal
• Loss of sensation

Sensitivity to heat

• This symptom very commonly causes a transient worsening of symptoms

Cognitive & emotional disturbances

• Loss of short term memory
• Loss of concentration, judgment or reasoning

Whilst some of these symptoms are immediately obvious, others such as fatigue, altered sensation, memory and concentration problems are often hidden symptoms. These can be difficult to describe to others and sometimes family and carers do not appreciate the effects these have on the person with MS and on employment, social activities and quality of life.

Types of MS

The course of MS is unpredictable. Some people are minimally affected by the disease while others have rapid progress to total disability, with most people fitting between these two extremes. Although every individual will experience a different combination of MS symptoms there are a number of distinct patterns relating to the course of the disease:

• Relapsing-Remitting MS:  Frequency - approx 25%

In this form of MS there are unpredictable relapses (exacerbations, attacks) during which new symptoms appear or existing symptoms become more severe. This can last for varying periods (days or months) and there is partial or total remission (recovery). The disease may be inactive for months or years.

• Benign MS: Frequency - approx 20%

After one or two attacks with complete recovery, this form of MS does not worsen with time and there is no permanent disability. Benign MS can only be identified when there is minimal disability 10-15 years after onset and initially would have been categorised as relapsing-remitting MS. Benign MS tends to be associated with less severe symptoms at onset (e.g. sensory).

• Secondary Progressive MS: Frequency - approx 40%

For some individuals who initially have relapsing-remitting MS, there is the development of progressive disability later in the course of the disease often with superimposed relapses.

• Primary Progressive MS: Frequency - approx 15%

This form of MS is characterised by a lack of distinct attacks, but with slow onset and steadily worsening symptoms. There is an accumulation of deficits and disability which may level off at some point or continue over months and years.

The course of MS

It is impossible to predict accurately the course of MS for any individual, but the first five years give some indication of how the disease will continue for that person. This is based upon the course of the disease over that period and the disease type. (i.e relapsing- remitting or progressive ). The level of disability reached at end points such as five and ten years is thought to be a reliable predictor of the future course of the disease.
However, there are many variables in this scenario:

• A large percentage of people with MS (approx 45%) are not severely affected by MS and live normal and productive lives.
• There is a significant group (40%) which become progressive after a period of some years as relapsing-remitting.

Age at onset and gender may also be indicators of the long-term course of the disease. Some research has indicated that younger age at onset [under 16 years of age] implies a more favourable prognosis, but this must be tempered by the knowledge that for a young adult living with MS for 20 or 30 years may result in substantial disability even if the progress towards disability is slow and in the first 10 or 15 years he or she is relatively mildly affected. Other research has indicated that late onset [ie over 55 years of age], particularly in males, may indicate a progressive course of the disease.

The prospect of therapy for MS should be encouraging to those newly diagnosed with MS. Drugs such as interferon beta are possible treatments for those who are relapsing-remitting and ambulatory. The interferon betas may slow the progression of disability as well as reduce the severity and frequency of exacerbations. At this stage it is not known whether interferon beta has any impact on primary progressive MS. The breadth of research currently targeting MS gives hope that therapy which will interfere with the process of MS (even if not curing the disease) is not an unreasonable expectation in the near future.

It should be remembered that many people with MS go through life with a manageable disability (e.g. fatigue, a limp, bladder problems). At least 15% of people with MS, however, will become severely disabled (i.e.having to use a wheelchair on a full-time basis). Life expectancy for persons with MS is near normal.

Diagnosing MS

Unlike many other diseases, there is no straightforward ‘positive or negative’ test for MS and none of the range of tests available to help doctors with their diagnosis is 100% conclusive on its own. This means that ultimately a doctor will diagnose MS by a combination of observing a person’s symptoms, and ruling out other possibilities. This is called a ‘clinical diagnosis’.

Problems with diagnosis

Unfortunately for a significant minority of people (10 – 15 %) a definite diagnosis is still not possible even after all the available tests have been carried out. However, it is possible to rule out other very serious causes of MS type symptoms, and over time with periodic examinations and the monitoring of changes in a person’s condition, diagnosis is possible in the vast majority of cases.

New MS Diagnostic Criteria

MSIF’s International Medical and Scientific Board have drawn up new MS diagnostic criteria to help medical professionals distinguish between MS and other conditions that may present similar symptoms. The new criteria allow the results of MRI scanning to included so that it may be possible to diagnose MS when someone has had only one episode of symptoms. When the new criteria are used, a person may be classified as having MS, possible MS or not MS.

Clinical diagnosis

Early MS may present itself as a history of vague symptoms, which may occur sporadically over a prolonged period of time and could often also be attributed to a number of other medical conditions. Invisible or subjective symptoms are often difficult to communicate to doctors and health professionals and sadly it has not been uncommon for people with MS to be treated unsympathetically in the very early stages of diagnosis.
Even when a person shows a ‘classic’ pattern of MS type symptoms, the symptoms must conform to agreed criteria before a doctor or neurologist can diagnose clinically ‘definite’ MS. These criteria are that:
Two different areas of the central nervous system are affected, and that these effects have been experienced on at least two separate occasions of at least one month apart and that the person is within the normal age range for the onset of MS’
So although it is possible to be diagnosed as having ‘definite’ MS on your first visit to a neurologist, it is also quite likely that the diagnosis will be uncertain, and that the person will be referred for further tests.

Diagnostic tests

Here is a quick guide to the most commonly used diagnostic tests, what is involved and how much they can tell you. The doctor or neurologist may want you to undertake all of these examinations before making a clinical diagnosis.

Medical History

The doctor will ask you for a detailed medical history which will include your past record of signs and symptoms as well as the current status of your health.
When the type of symptoms you have experienced, possibly over a long period of time, are examined their pattern may suggest MS. However, a full physical examination and medical tests will be needed to confirm the diagnosis.

Neurological Examination

A neurological examination looks at how well your nervous system is working. The neurologist is testing for abnormalities in the nerve pathways that take messages from the brain to the other parts of your body. They will look for changes in eye movements, limb co-ordination, weakness, balance, sensation, speech, and reflexes.
This examination may also uncover symptoms that suggest MS, but cannot be used to determine what is causing any problems that may exist. Other possible conditions that produce similar symptoms to MS must be eliminated.

Testing of Visual, Auditory and Somatosensory Evoked Potentials

In spite of their complicated sounding name, the point of these tests is straightforward. They are used to measure the speed at which messages from the brain pass along the nerves.
The speed of messages passing through the nervous system is measured by placing small electrodes on the head, which monitor brain waves in response to visual and auditory (hearing) or sensory stimuli. The most useful of the three tests is the visual evoked potential although nowadays, with increased use of MRI, the evoked potential test are required less often
These tests are not invasive or painful and therefore do not require a stay in hospital.
The time it takes for nerves to pass on messages from the brain is an indicator of the condition of the nervous system and is used to help determine whether demyelination has occurred.

Magnetic Resonance Imaging (MRI)

The MRI scanner is a more recent diagnostic test and takes very detailed pictures of ‘slices’ of the brain and spinal cord, showing any existing areas of sclerosis (lesions or plaques).
During an MRI scan the person being tested lies absolutely still on a table that moves inside a large tube which is part of the machine that contains the magnet. The person conducting the test sits in a separate room monitoring the equipment receiving the images; however they can also see the person being tested, usually through a large window.
There is no pain involved in MRI, but many people find it quite an unusual experience, and it can be both claustrophobic and noisy. Any discomfort can be alleviated by a mild sedative. Sometimes an injection is given in to a vein of a contrast agent containing gadolinium as this can show up new areas of inflammation and may help to make the diagnosis.
It is worth remembering that the person conducting the test is not usually able to give you any direct feedback and the images from the scan will be sent to your doctor for analysis.
Whilst this is the only test in which the lesions of Multiple Sclerosis can be seen, it cannot be regarded as conclusive. The scanner may not pick up all lesions, particularly in the early stages of the disease, and some other conditions can produce identical changes in the nervous system.
The MRI clearly shows the size, quantity and distribution of lesions and together with supporting evidence from medical history and neurological examination, is very significant indicator toward confirming the diagnosis of MS. It is abnormal in over 95% with a definite clinical diagnosis. The MRI is a very useful tool in clinical trials in assessing the value of new therapies, due to its ability to demonstrate changes in the disease’s activity.

Lumbar Puncture

here are several tests that can be carried out on cerebrospinal fluid (the fluid which flows around the brain and spinal cord), but usually with MS the patterns formed by proteins are examined.
The fluid is taken from the spinal cord by inserting a needle into the lower back. A local anaesthetic is given to numb the skin, and therefore whilst it is uncomfortable it is not usually painful.
This test requires the person to lay flat for a number of hours after the test, and headaches due to dehydration are a noted side effect; this can be alleviated by drinking fluids immediately after the procedure, to help the body rapidly replace the cerebrospinal fluid it has lost. Some people may require an overnight stay in hospital and a subsequent short period of recuperation.
The proteins in the spinal fluid of the majority of people (90%) with established MS form a particular pattern when an electrical current is passed through them, and so this procedure can potentially confirm an MS diagnosis. However, the cerebrospinal fluid proteins of people with early or mild MS do not always show the same pattern, so again may not be conclusive. It is often used when MRI results have been inconclusive.

What can I do?

Multiple sclerosis is a disease that has to be lived with on a daily basis and for the rest of your life. If you have little or no physical disability, your lifestyle and that of your family may not change at all. Nevertheless, the knowledge of the disease and its potential implications can weigh very heavily on the individual with the disease and the surrounding family. It all really depends upon the symptoms you are experiencing and how you feel. Symptoms can be continually present or pronounced at different times. The severity of the symptoms often dictate to what extent MS will affect your life.
Many people with MS say they have to plan ahead more than they were used to doing in the past and that they have to change some of their activities and schedules. If fatigue is a problem, for example, several short rest periods each day may allow you to continue your usual routine, but at a slightly slower pace.

Exercise

Physiotherapy and regular exercise can be helpful in keeping as fit as possible. You and your doctor will probably want to discuss what therapy or exercise programme would be of benefit. It might involve having physiotherapy on a fairly regular basis or doing specific exercises at home. Others have found activities such as swimming, yoga and horseback riding to be helpful. Any exercise that you enjoy and are able to do comfortably will be beneficial. Besides maintaining good muscle tone, exercise can be a great way to release tension and to relax. Your local or national MS society may offer recreation or exercise programmes that would be helpful, or recommend facilities or health personnel to provide these activities.

Diet

Over the years, a number of diets for MS have been proposed, which is probably only natural for a disease with no known cause or cure. Whilst some of the suggested diets contradict each other, it does make sense to have a nutritionally balanced diet that will ensure you have all the required vitamins and minerals. Some people find that a diet low in animal fats and high in polyunsaturated fats is helpful to them. Please see the section on Alternative Therapies Used by People with MS from "MS The Guide to Treatment and Management" as well. It would be wise to discuss any changes in your own diet with your physician or dietician.

Job Planning

Because MS might bring about some physical and cognitive disability over time, it makes sense to realistically evaluate your current job in the light of these possible changes. If your job is very physically demanding, you might want to consider alternative jobs or retraining to reduce the physical nature of your occupation. In a more sedentary job, your physical limitations may not impact so greatly and you might be able to remain at work for many more years. Career counselling and vocational training may be available in your country.

Family Changes

One of the more difficult problems for the married couple to cope with after a diagnosis of MS is the possible change in their roles. The possibilities for the future should be looked at together. A family with two incomes may have to learn to cope on one. One of the partners may have to take on additional responsibilities for running the home and caring for the children. Full and open discussions are the key to dealing with these important changes successfully.

MS and Parenting

The decision to have a family should be considered carefully when one or both partners has MS. Many couples are concerned about the risk that their children will also get MS. It is important to remember that while there is a slightly increased risk of MS in the children where one of the parents has MS compared to the general population, that risk is still very low.
While the heredity of MS is not clear-cut, close relatives of people with MS have an increased risk compared with the general population of people who do not have any family link. Results from family studies on MS suggest that the lifetime risk for a child of a parent with MS to also develop MS ranges from 3-5%, if the MS parent is the only family member with the disorder. The risk figure will vary if there are several family members with MS and/or MS occurs on both the maternal and paternal side.
The long-term consequences of the decision to have children should be considered as well. Factors such as current and future level of disability, the ability of partners to contribute to the care and development of children, support potential from family and friends, and financial security should be appraised.
In pregnancy there does not appear to be an increased risk of relapse, nor is there any effect on the course of the pregnancy, labour or delivery. There appears to be a reduced relapse rate during pregnancy followed by an increased rate in the first six months following the birth of the baby. There is no evidence that MS impairs fertility or that it leads to an increased risk of miscarriages, birth defects, still births, labour and delivery complications.
Although there are no specific medications used by all persons with MS, various medications are used to treat exacerbations and MS symptoms. Some of these (or combinations thereof) may be harmful to a developing foetus. In addition, some people follow special diets and/or various other treatments (medically supervised or unsupervised) reported to be beneficial in MS. Prospective parents should always discuss all treatments and medications with their physician prior to conception to assess whether any of these might be potentially harmful to a developing foetus.
Pregnancy appears to have no effect on long-term disability nor on the long-term course of the disease. Breast feeding does not appear to be related to the increased relapse rate after delivery, but is associated with considerable fatigue, which might influence the decision to utilise formula feeding and childcare assistance.
The decision to have a child should not be made without considering all possible implications. MS may affect family functioning and the well being of children must be a prime consideration in the accommodations made. It is very important to remember that child-rearing is a long-term commitment, and couples must think about the impact of MS over the 18 years or so during which they will actively be involved in raising a child and not concentrate just on pregnancy and the newborn period. You must understand MS and appreciate that a support system might be more necessary in the long-range outlook than in another family without MS. The decision to become a parent should be based primarily on the desire to have a family and while MS should dictate some extra deliberations, it should not be in itself a restriction.

MS and work or education

Because MS is a highly variable disease, it is hard to give a general answer that would apply to everyone diagnosed with MS. Each person is affected differently and may experience a number of symptoms with varying degrees of severity and/or frequency. It is the severity of symptoms and possible resulting disability that will dictate the extent that work or education will be influenced. The possibility of some degree of disability in the long-term should not outweigh the fact that there can be many ongoing productive years for the person with MS.
Usually, people who have the benign form of the disease or whose symptoms are minimal and not visible will probably be able to continue with their usual employment and educational activities. If fatigue is a problem, they may have to plan for regular rest periods during the day.
People who have relapsing-remitting MS or who develop some level of disability will need to realistically evaluate their situation in many areas (e.g. physically, socially, cognitively) to decide on long-term as well as short-term strategies for work and education. People with MS should work with their employer and/or educational institutions to ensure their needs can be met.
The decision to share information as to whether you have MS is a matter of personal judgement. If you do not have visible symptoms there may be no reason to disclose a diagnosis of MS. On the other hand, many educational institutions (for example) will make special accommodations for persons with MS in regard to timetable, examinations, entry requirements etc, while maintaining a level of confidentiality.
The legal requirements to accommodate people who have disabilities vary from country to country. Your national MS society may be able to advise you of the situation in your country.  

Help and Health Care Professionals

Coming to terms with multiple sclerosis can be hard for you and all those close to you. Advice on treatment, coping with symptoms, management as well as emotional aspects is available through health care professionals. The support network set up for individuals varies in each country and depends on health care systems, but you may have access to:

• A neurologist who will confirm your diagnosis, treat your acute exacerbations and to whom you will be referred if you or your physician have any particular concerns
• A family physician who can assist you and your family to understand MS and the effects it may have on your health and lifestyle

If you have particular problems you may be also be referred to an appropriate specialist such as a:

• Physiotherapist
• Psychologist
• Occupational therapist
• Social worker
• Counsellor
• Speech therapist
• Dietician

Other services may include:

• Help in the home with practical tasks
• Advising you on financial management and assistance which might be available

Do I tell family, friends and employers and what do I tell them?

Deciding whether or not to tell people that you have MS is a very personal decision. For many people with MS the disease is not clearly obvious, so there is a choice whether to disclose the diagnosis or not. If you need practical assistance, either daily or occasionally, this may dictate revealing to those close to you that you have MS. Your decision may depend on your relationships with others and how you think that they will react to the news.

Families

When you first learn that you have MS you may feel able to discuss it with your family. For many people, it is a relief to be able to talk about it. Before you discuss your diagnosis with members of your family, you need to consider how you think that they will react. Family members generally are supportive. However, they may also be upset by the news, especially if they don't know anything about MS. It may be helpful to have informational pamphlets available to help talk about MS and how it affects you, to ensure that people understand the disease. You may decide not to tell your family, or to tell only some of your relations if you think that is could be detrimental to your relationships or lead to unwanted disclosure of your condition.

Telling young children

It is probably not useful to make a formal announcement about MS to very young children, but it is important that their questions are answered as and when they occur. Instinctively children are aware that something is wrong and that you are worried. You need to be aware of this and understand that their behaviour can sometimes be disturbed. The truth is hardly ever as frightening as their fears. A number of the national MS societies have booklets for children available that you may find helpful.

Telling older children

Older children and adolescents need to be informed but may require a more careful approach. Although they can appear outwardly calm and possibly even indifferent, they are most likely very concerned. Their anxiety can be helped by information. Their concerns need to be addressed as they arise and they need to know that you are willing to speak with them as issues come up. The opportunity to read selected literature from the national MS society may be helpful.
Adolescents feel that they should be treated as adults, and if they are not allowed to play a responsible part in a family problem they can feel both hurt and resentful, and as a result may start behaving in a destructive way. If, however, their cooperation is encouraged they can become surprisingly mature and a source of strength. Trying to keep your problem to yourself will not spare them any anxiety.

Telling parents

Telling parents of your diagnosis can also be difficult. It is very hard for parents to accept their child's diagnosis, and it is extremely important to be sensitive to their feelings and needs. Mothers, especially, will probably be extremely protective and many parents will feel that they are to blame.

Where a dependent child or adolescent has MS

The parents of a child or adolescent with MS face enormous responsibility as to what to tell the young person about the disease and how much information and responsibility should be placed on their child. Many young people with MS are minimally affected initially and parents, both for their own sake and for the young person, resist public exposure, when there may be many years before the effects are obvious. During this time they hope the child/adolescent can mature into an adult, complete an education, set out on a career and build relationships.
Usual counselling advice is based on the idea that all people diagnosed with MS are adults and, though not common, there are older children and adolescents who develop MS. The notion of immediate and full revelation of the nature of MS is a worthwhile generality that comes under some question in this particular cluster of persons with MS.
In the case of children under fifteen, particularly with minor symptoms and minimal disability, there is some argument for withholding the full nature and prospect of the disease. Obviously the child is aware there is something wrong, which comes and goes and often requires medical attention - but the parents can bear the responsibility of decisions and involvement with medical personnel, while the child continues to lead a "normal" existence.
In the case of adolescents (fifteen years and older) they are old enough to be involved in the reality of the disease and the decisions which their parents make regarding treatment, education etc. Nevertheless, it is important to remember that all adolescents are emotionally labile and have fragile self-images, MS being an additional burden for them to cope with.  

Employers

The decision over whether to tell your employer could have an impact on your work. It may ensure more support or, in some cases, unfairly affect your career prospects. The legal requirements in relation to disclosure vary from country to country and you should check with your national MS society.

Advantages of disclosure

• Telling of your diagnosis can bring peace of mind. Many people with MS report that 'hiding is more stressful than telling'. Disclosure also makes it easier, if the need arises, to discuss any workplace adaptations that might be necessary.
• Having 'cleared the air', you will have an understanding of others' reaction to the fact that you have MS and of how you are likely to be perceived and treated by colleagues. You will be able to deal far more honestly with people.
• You will be released from the worry that a past employer or reference might inadvertently reveal the fact that you have a disability.
• Your apprehension about any proposed medical examination will be reduced, because you will know that the employer, insurance company and other relevant parties are aware of your MS before the examination.
• Having told your employer that you have MS, you would find it much easier to educate him/her and colleagues regarding the true nature of the disease. As well, this allows you to discuss with your employer any future changes in your condition.

Disadvantages of disclosure

• Fear of being discriminated against because of having MS, eg being denied promotion, training etc.
• Fear of reaction of colleagues and others.
• Fear of losing your job or not being offered a job (particularly if it has happened to you before).
• Fear that, if something goes wrong in your job, it will be blamed on your disability.

What do I tell people about having MS?

Before you tell people that you have MS, you need to think about what they need to know. Many people will have no experience with MS or, on the other hand, know of someone with MS whose experience of the disease may be very different to yours. Your community includes people who are intimately connected to you and those whom you know casually. Your relatives, friends and employer naturally will want to know what has happened to you, especially if you have visible symptoms. They may also want to know what they can do to help. If you are honest with those close to you and let them know you will accept help when you need it, you will allay their worries and probably find them very supportive.
You can start with a simple explanation of MS and how it is affecting you at this time, so that people are aware of any practical support which you may need without imagining that your MS is any worse than it is. If you have a standard description which you use, it can help to ensure that you feel confident giving the information and that the details you give are consistent. Certain general issues may need to be quickly refuted - for many people there are stereotypes which surround MS (eg that everyone with MS ends up in a wheelchair) or misunderstandings (eg that MS is contagious). MS societies have pamphlets and brochures that will make the task easier. Casual acquaintances can be told if it comes up in conversation or if you wish. In this case there is probably no need for formal explanation.