All clients with neurological deficits affecting movement including:
Definition of MS (Multiple Sclerosis)
Multiple Sclerosis (MS) is the most common disabling neurological condition affecting young adults. Around 85,000 people in the UK have MS.
MS is the result of damage to myelin - a protective sheath surrounding nerve fibres of the central nervous system.
When myelin is damaged, this interferes with messages between the brain and other parts of the body.
For some people, MS is characterised by periods of relapse and remission while for others it has a progressive pattern. For everyone, it makes life unpredictable. back to the top
Diagnosing MS (Multiple Sclerosis)
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. back to the top
Diagnostic tests
Neurological examination
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. back to the top
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. back to the top
Evoked potentials
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. back to the top
Lumbar puncture
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. back to the top
Other tests
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.
Diagnostic Criteria
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).
Results
After assessment, you will be given one of the following diagnoses:
* You have MS
* You have possible MS. This may happen if your tests are not clear. For example, your symptoms and spinal fluid test suggest MS, but there are no lesions visible on the MRI scan.
* You do not have MS
The causes of MS (Multiple Sclerosis)
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.
Genetic factors
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.
Environmental factors
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. back to the top
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 Health and Clinical Excellence (NICE) has produced guidelines on best practice for all aspects of MS health care 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 you 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. back to the top
Multiple Scleroris and life expectancy
Some people have asked us for information on life expectancy in MS, but it is not the kind of subject everyone wants to read about. If you are not sure, you could skip this page for now - you can always come back to it.
Life expectancy and statistics. Do you want to know? Putting it in perspective.
The only way to talk in general terms about any aspect of MS, including life expectancy, is to gather together the information from thousands of people with the illness and calculate an 'average'. An average figure is a useful guide. However, do not assume that your MS will behave just like the average; the experience of people with MS is very varied.
Consider this before you go further. There is an average life expectancy for healthy people without MS: have you ever considered what it is? You could get closer to your particular life expectancy by looking up the specific risk for your gender, your income group, where you live and your level of education. All these factors influence life expectancy.
Take this example: a recent study reported in the British Medical Journal (2004, 328 (7455) p1519-28) has shown that the life expectancy of smokers is reduced on average by 10 years compared to non-smokers. But my grandfather smoked all his life and he is 97. You see, one individual’s experience may be very different from the average. When you see the words on average below, bear this in mind.
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.
What does research suggest?
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 health care for people with severe MS has been effective in reducing premature deaths.
Does MS affect life expectancy?
The answer is yes.
It is perfectly possible to have MS, live a normal life span and die of unrelated causes. MS itself does not cause death. However:
* As the disability from MS increases, so rises the risk of chest or bladder infections. On average, two-thirds of people with MS die of such infections. It is certainly worth seeking medical attention if you have choking problems with food or drink, or if you have recurrent infections.
* Research suggests that on average life expectancy of people with MS is lower than that of the general population, by around 10 years.
* On average people die slightly less than forty years after their first symptoms.
* Please remember my grandfather, going strong at 97, who smoked all his life and whose life expectancy on average is 10 years less than non-smokers!
Some research shows survival has been improving in recent years, perhaps due to better health care. We do not know if disease modifying drugs, like beta interferon, influence life expectancy.
Alasdair Coles
What to expect from your neurologist?
To get the most out of your appointment, you might like to prepare by writing a list of questions you want to ask your neurologist. You may also want to keep a diary of your symptoms so you can discuss any changes in your condition at each appointment.
Neurologists are well equipped to answer your questions and offer you guidance on managing your condition. They have a broad base of experience because they have seen many different people with MS.
Medical terminology can be daunting. Do not be afraid to ask the neurologist to repeat anything that is unclear and to explain any terms you do not understand. You may wish to take a partner, family member or friend who can act as a second set of ears, take notes and prompt you to ask any questions you may have forgotten to ask.
If you are concerned that your neurologist is not an MS specialist, you could take some information to discuss with them at the appointment. You can also ask to see another neurologist who is a specialist in MS and get a second opinion. back to the top
What is Multiple Sclerosis? (What is MS?)
Multiple Sclerosis (MS) is a condition of the central nervous system. It is the most common disabling neurological disease among young adults and affects around 85,000 people in the UK. MS is most often diagnosed in people between the ages of 20 and 40, and women are almost twice as likely to develop it as men.
Once diagnosed, MS stays with you for life, but treatments and specialists can help you to manage many symptoms well. Although its cause is not known and a cure has yet to be identified, research continues into all aspects of the condition.
The central nervous system
To understand what happens in MS, you need to understand how the central nervous system works. Your central nervous system is made up of your brain and spinal cord. Your brain controls bodily activities, such as movement and thought, and your spinal cord is the central message pathway. Messages are sent from your brain to all parts of your body, controlling both conscious and unconscious actions. back to the top
What happens in MS?
Surrounding and protecting the nerve fibres of the central nervous system is an important substance called myelin, which helps messages travel quickly and smoothly between the brain and the rest of the body.
MS is an autoimmune condition. This means that your immune system, which normally helps to fight off infections, mistakes your body’s own tissue for a foreign body, such as infectious bacteria, and attacks it. In MS, the immune system attacks myelin. This damages the myelin and strips it off the nerve fibres, either partially or completely, leaving scars known as lesions or plaques. This myelin damage disrupts messages travelling along nerve fibres – they can slow down, become distorted, pass from one nerve fibre to another (short circuiting), or not get through at all.
As well as myelin loss, there can also sometimes be damage to the actual nerve fibres. It is this nerve damage that causes the accumulation of disability that can occur over time.
As the central nervous system links all bodily activities, many different types of symptoms can appear in MS. The specific symptoms that appear depend upon which part of your central nervous system is affected and the job of the damaged nerve.
Making it easier to understand
The simplest way to understand what happens in MS is to think of your nervous system as an electrical circuit, with your brain and spinal cord acting as the power source and the rest of your body being the lights, computers, TVs, etc. Your nerves are like the electrical cables linking all of the appliances together and the myelin is the plastic insulation surrounding these cables. If the insulation gets damaged, the electrical current to appliances can become faulty or temperamental and there may be a short circuit, preventing the appliances from working properly.
Why is it called 'Multiple Sclerosis'?
The word sclerosis comes from the Greek 'skleros' meaning hard. In MS, hard areas called plaques, lesions or scars develop around the nerves. 'Multiple' refers to the many different areas of the central nervous system that may have damaged myelin.
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