Developing MS is certainly not your fault and has nothing to do with your lifestyle or behaviour. You did not catch it and it is not contagious. Although we do not know why people get MS, research suggests that a combination of genetic and environmental factors may play a role.
MS is not directly inherited and, unlike some conditions, there is no single gene that causes it. It is possible that a combination of genes make some people more susceptible to developing MS; however these genes are also common in the general population. So genes are only part of the story and other factors are also involved in MS.
Whilst MS can occur more than once in a family, it is more likely this will not happen. Indeed, there is only a two per cent chance of a child developing MS when a parent is affected. This risk is much lower than, for example, the risk of developing cancer or heart problems when a parent is affected.
MS is more common in areas further away from the equator. It is virtually unheard of in places like Malaysia or Ecuador but relatively common in Britain, North America, Canada and Scandinavia. It is not clear why, but it is possible that something in the environment, perhaps bacteria or a virus, plays a role. No single virus has been identified as contributing to MS, but some researchers think that a common childhood virus may act as a trigger by disturbing your immune system or indirectly setting off a process whereby your immune system attacks itself. This theory remains unproven and many people who do not have MS would have also been exposed to these viruses.
Interestingly, it seems that if you move to countries further from the equator after the age of 15, your chances of developing MS still correspond to your country of origin, rather than the country you move to.
Due to its complexity and variety of symptoms, MS is not easy to diagnose. There is no single diagnostic test and other conditions with similar symptoms may need to be ruled out before a final diagnosis can be made. Specific diagnostic criteria have been developed to assist healthcare professionals with making a diagnosis.
If you visit your GP with neurological symptoms that cannot be explained, they may consider the possibility of MS. If your initial symptoms are not too severe, your GP may not take any immediate action. However, if you have another period of symptoms (relapse), your GP should refer you to a neurologist, who specialises in conditions of the central nervous system. If the neurologist believes that you may have MS, you should be given an explanation of what will happen next. Before a final diagnosis of MS can be made, you will normally undergo a number of tests. The neurologist will then assess your test results against set diagnostic criteria to determine if you have MS.
Your neurologist will ask you lots of questions about past symptoms and problems - this is known as 'history taking'. It helps the neurologist get a better picture of you and can help identify any other problems that may explain current symptoms. A physical examination checks for abnormalities in nerve pathways involved in movement, reflexes or sensation. Your neurologist will look for changes or weaknesses in your eye movements, leg or hand coordination, balance, sensation, speech or reflexes. Whilst a neurologist may strongly suspect MS at this stage, a diagnosis would not be given until other positive test results confirm MS.
Magnetic Resonance Imaging (MRI)
An MRI scanner uses a strong magnetic field to create a detailed image of your brain and spinal cord. It is very accurate and can pinpoint the exact location and size of any damage or scarring in your myelin (lesions). MRI scans confirm the diagnosis in over 90 per cent of people with MS. To get the image of a person's brain and spinal cord they must lie down and enter a small tunnel in the centre of the MRI scanner. The process takes between 10 and 30 minutes and is painless.
This involves testing the time it takes for your brain to receive messages. Your neurologist will place small electrodes on your head to monitor your brain waves responding to what you see or hear. This is a painless procedure. If myelin damage has occurred, messages to and from your brain will be slower.
This is sometimes called a spinal tap. It involves a needle being inserted into the space around your spinal cord, under local anaesthetic. A small sample of the fluid that flows around the brain and spinal cord, called cerebrospinal fluid, is then taken and tested for abnormalities. People with MS often have antibodies in this fluid, showing that the immune system has been at work in the central nervous system. This test is not carried out as often as it used to be and tends only to be used where a diagnosis of MS has not been confirmed by other tests. People commonly report headaches following a lumbar puncture. This is a recognized side effect and your neurologist can advise on how best to manage this.
To rule out conditions that mimic MS, other tests may also be completed: blood tests to reveal certain antibodies and inner ear tests to check your balance.
Although the criteria say it is possible to clinically diagnose MS without any tests, they recommend that investigations are carried out so test results can provide further evidence of MS.
Diagnosis of relapsing remitting MS rests on:
- two relapses, separated by more than 30 days OR
- one relapse and an MRI scan three months later that shows new lesions
To determine if a person has secondary progressive MS, they must have:
- had relapses in the past
- shown a steady increase in disability for at least six months, whether or not they continue to have relapses
Primary progressive MS is diagnosed if there have been no previous relapses and if there is:
- a progression of disability over at least a year
- an MRI scan that shows lesions consistent with MS
- evidence of MS detected by examining the spinal fluid collected during a lumbar puncture (this is the only situation where a lumbar puncture is needed to diagnose MS).
MS is unpredictable. It varies from person to person and can result in a wide variety of symptoms, none of which are unique to MS. You may experience only a few symptoms and it is unlikely that you will develop them all. Unfortunately, it is impossible to predict what will happen during the course of anyone's MS.
Symptoms range from mild to severe, from brief to persistent. Some symptoms, such as walking difficulties, are obvious to other people; others, like pain or fatigue, are not. These are often referred to as hidden, invisible or silent symptoms, and can be more difficult for people unfamiliar with MS to understand.
The more common symptoms of MS include:
- Fatigue: an overwhelming sense of tiredness making physical or mental activity hard and, for some, impossible.
- Problems with walking, balance and coordination.
- Visual problems, including blurred or double vision, temporary loss of sight in one eye, or both.
- Numbness or tingling in the hands or feet.
- Pain: sometimes mild, sometimes severe.
- Loss of muscle strength and movement.
- Stiffness and spasms: a tightening or involuntary movement in particular muscle groups - especially in the legs.
- Anxiety,depression or mood swings.
- Cognitive problems, such as difficulty with memory and concentration.
- Speech problems, including slurring.
- Continence issues: a lack of control over bladder or bowel functions; an increased risk of urinary infection.
- Sexual problems, such as lack of libido or erectile difficulties. (Though it should be noted that MS does not affect fertility.)
There are no rules governing how you should feel or behave when you're told you have MS. Just as the condition affects each person differently, every individual has their own way of reacting to the news.
Nobody else - whether it's your doctor, partner, family or friends - can tell you what you should or shouldn't be feeling or how you should react. You might burst into tears or feel stunned into silence. It's not unusual to feel guilty or wonder what you've done to deserve MS. Nor is it unusual to feel relief; after years of unexplained symptoms, suspicions and fears, you finally have an answer. It's possible to feel a combination of many feelings, either together or one after the other. These feelings can take some time to settle down and may also reappear as you experience new symptoms or the MS progresses.
Adapting to life with MS can take some time, but with a generally positive attitude and appropriate health and social care, most people manage their condition well.
Where can I get more information?
Getting up-to-date, accurate and unbiased information can help you gain the knowledge needed to make informed decisions and communicate effectively with health and social care professionals. MS Society publications are based on scientific and medical evidence and cover a variety of issues relating to MS.
The internet is another resource widely used by people affected by MS. However, this rich source of information is unregulated, which means that misleading or even wrong information is out there! It is important that people are aware of this problem, and ask for help from the MS Society or a healthcare professional if they have concerns about the validity or accuracy of information downloaded.
What should I expect from the NHS?
The National Institute for Clinical Excellence (NICE) has produced guidelines on best practice for all aspects of MS healthcare in the NHS. These guidelines are intended to help professionals improve their service, and to give people affected by MS a clearer idea of what to expect from the NHS.
If every have any questions, problems or concerns (of a non-medical kind) about the health service you are receiving, you can contact your local Patient Advice and Liaison Service (PALS). They will answer queries both from people with MS or those looking after them. The telephone number for PALS services is normally available from a doctor's surgery or hospital.
Because it is known that MS can cause much distress to both the sufferer and his/her family, an increasing number of Centres offer confidential face-to-face counselling to help deal with the emotional effects and concerns which living with MS (or living with an MS person) can bring.
It is recognised that mind and body are inseparable, what affects one invariably affects the other. Hence it is equally as important to provide help and support for the emotional aspects of MS as for the physical effects and the symptoms.
That emotional stress often manifests itself in body symptoms is a medically recognised fact, similarly that illness and body changes have an effect upon feelings and emotions. When MS is newly diagnosed, or new symptoms appear, it is especially important to avoid a "downward spiral" in which feelings about the body cause emotional disturbance which in turn may worsen the body conditions.
The thoughts and feelings that MS provokes can be difficult to handle within the family situation where each member is affected in different ways. Confidential counselling provided by a qualified professionally trained Counsellor, offers time and space for these feelings and concerns to be identified, considered, explored, evaluated and understood and to help people get back in touch with a better sense of themselves.
The MS Society operates a free & confidential* national Helpline and it’s available on 0808 800 8000. The MS Society’s specialist staff and trained volunteers are available 9am to 9pm, Monday to Friday, except bank holidays.
The MS Helpline is a good first point of contact; it provides emotional support and information to anyone affected by MS, including newly diagnosed people or those living with the condition for many years, their carers, family or friends.
All Helpline staff and volunteers are fully briefed in the latest developments relating to MS and are trained to assist with a wide range of issues, including practical concerns that may arise.
The Helpline team works closely with all other teams at the MS Society to ensure that callers' concerns can be addressed in our day-to-day work.
*Calls remain confidential but may occasionally be monitored for training purposes.
MS National Counselling
24 hour telephone helpline
020 8422 2144
The practical problems that MS causes in the lives of you and your family can often be eased by obtaining advice on welfare rights and facilities to help in disability.
Centres are able to provide MS people with guidance and the information they need to access the various forms of assistance obtainable (including statutory aid from, for example, the DSS (United Kingdom only) both locally and nationally.
Ask your Centre first, they may have the answer from the accumulated knowledge of dealing with MS questions over many years and from keeping up to date with changes in the ‘rules’.
There is no single strategy for telling people you have MS. Everyone is different and has their own dynamics in their personal and work relationships.
Timing is important when telling others you have MS. You do not need to rush into telling people; wait till you are ready. Think carefully about how you will tell people and about when would be an appropriate time to talk, especially when you tell family and close friends. Although you are the one with MS, try not to forget that your diagnosis will also affect their lives.
People may not react as you would expect, no matter how well you know them. Whilst many people are supportive and understanding, others may be upset or appear surprisingly blasé.
Who should know legally?
If you are a driver the law says you need to tell the DVLA that you have been diagnosed with MS. Provided a doctor confirms that the person is fit to drive, their driving licence will either stay as it is or be renewable every three years.
You do not normally need to tell your employer except where there may be a health and safety risk or where you wish to have reasonable adjustments made under the Disability Discrimination Act (DDA).
For most people there are no other legal requirements about who you should tell. But you should remember to check your insurance policies to see if any of these are affected.
MS is complex and it is impossible to predict how you may be affected over time. As a result, it is as difficult to determine the life expectancy of someone with MS as it is for someone who does not have MS.
Research suggests that:
- the overall life expectancy of people with MS is only slightly lower than that of the general population
- since the 1960s, increase in life expectancy for people with MS has grown more rapidly than in the general population
- improved healthcare for people with severe MS has been effective in reducing premature deaths
The impact of MS on life expectancy
It is very unlikely that MS lesions will lead to death. If your MS symptoms become very severe, they may affect other bodily systems. And in very rare instances, where a lesion occurs on the part of the brain that regulates breathing and consciousness, a person could die if medical care is unavailable.
However, most healthcare professionals are well aware of potentially dangerous complications, such as choking because of swallowing difficulties or serious kidney problems as a result of continence difficulties. Using this knowledge, they are able to provide preventative measures to lower the risk of such things happening.
Although there is no clear explanation, there is some evidence to show that the rate of suicide is slightly higher in people with MS than the general population. This could be because depression is a common symptom, which often goes undetected and untreated. If you feel persistently low or think you may be depressed, you should contact your GP, nurse or neurologist. There are a number of treatments to help you manage your depression and changes in your emotions. Talking to a counsellor or being part of a support group can also help when learning to cope with your diagnosis or the progression of your MS.