Courtesy of the Multiple Sclerosis Society.
In common with M.E., we do not yet know the exact causes of Multiple Sclerosis (MS), though research suggests that a combination of genetic and environmental factors may play a role in its development. It is not directly inherited and genes are only part of the story. Other factors are also involved - perhaps a bacteria or virus.
We do know that MS is a condition of the central nervous system and the brain and spinal cord. It affects around 100,000 people in the UK.
MS is an autoimmune condition. This means that the immune system, which normally helps to fight off infections, mistakes its own tissue for a foreign body, such as bacteria, and attacks it. In MS, the immune system attacks the protective layer (called myelin) around nerve fibres. When this myelin is damaged, messages travelling between the central nervous system and the rest of the body can slow down, become distorted, pass from one nerve fibre to another, or not get through at all. As signals are disrupted, so people notice symptoms.
Because the central nervous system links all bodily activities, many different symptoms can appear in MS. Which symptoms appear depends on which part of the central nervous system is affected and the function of the damaged nerve.
Like M.E., once someone has MS, they have it for life. For many people, it begins as a relapsing remitting condition and symptoms are not always present, but can come and go. People with relapsing remitting MS can be symptom-free for many months or even years.
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 - M.E., for example - may need to be ruled out before a final diagnosis can be made. A neurologist should always be involved in the diagnosis of MS.
The following are the most commonly used tests and procedures:
- Neurological Examination & History
The neurologist will ask lots of questions about past symptoms and problems, which may help explain current symptoms. They will then do a physical examination to check for any problems with movement, reflexes or sensation. This involves looking for changes in eye movements, coordination of legs or hands, balance, sensation, speech or reflexes, as well as any signs of weakness. Although the neurologist may strongly suspect MS at this stage, a diagnosis is not usually given until other test results confirm MS.
- Magnetic Resonance Imaging (MRI)
The MRI scanner is a large piece of equipment that uses strong magnetic fields to create a detailed image of the brain and spinal cord. It is very accurate and can pinpoint the exact location and size of myelin damage. To get an image of their brain and spinal cord, a person lies in the tunnel-like centre of the MRI scanner. The process takes between 10 and 30 minutes and is painless. MRI scans confirm the diagnosis in over 90 per cent of people with MS.
- Evoked Potentials
This involves testing the time it takes the brain to receive messages. Small electrodes are placed on the head to monitor how brain waves respond to what is seen or heard. If myelin damage has occurred, messages and responses will be slower. This procedure is also painless.
- Lumbar Puncture
Sometimes called a spinal tap, this is carried out under local anaesthetic and involves a needle being inserted into the space around the spinal cord (a procedure similar to an epidural injection). A small sample of the fluid that flows around the brain and spinal cord is 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 sometimes report headaches following a lumbar puncture and a neurologist can advise on how best to manage this side effect.
- Other Tests
To rule out conditions that mimic MS, other tests may also be carried out, such as blood tests and inner ear tests to check balance.
There are three main types of MS, each with its own characteristics. Some people may be only mildly affected throughout their lives while, for others, progression may occur quite quickly. Most people with MS experience something in between these extremes. It is not always clear what type of MS someone has, particularly when newly diagnosed. Regardless of the type of MS, health professionals will base symptom management on individual needs.
- Relapsing Remitting MS
Most people are first diagnosed with relapsing remitting MS. This means they experience a relapse or flare up of symptoms (also known as an attack or exacerbation) followed by remission (a period of recovery). A relapse is defined by the appearance of new symptoms, or the return of old symptoms, for a period of 24 hours or more, in the absence of a change in core body temperature or infection. Relapses occur when inflammatory cells attack the myelin of specific nerves, interfering with the job the nerve normally does. For example, inflammation in the optic nerve may result in visual problems. Relapses usually take a few days to develop and can last for days, weeks or months, varying from mild to severe. Remission occurs when the inflammation subsides and symptoms settle down. In the early stages of relapsing remitting MS, symptoms can disappear completely during remissions. However, after several relapses there may be some residual damage to the myelin, resulting in only a partial recovery.
People with relapsing remitting MS who only have a small number of relapses, followed by a complete recovery, may be described as having benign MS. It is only possible to make a diagnosis of benign MS once a person has experienced little or no disability for a period of 10 to 15 years. However, a diagnosis of benign MS does not mean they will be free of problems; a relapse may occasionally occur after many years in which the MS has been inactive.
- Secondary Progressive MS
Most people who start out with relapsing remitting MS later develop a form that is known as secondary progressive MS. In secondary progressive MS, symptoms do not go away completely after a relapse and there is a steady increase in disability. To determine if a person has moved on to secondary progressive MS, they must have shown a continued deterioration for at least six months, whether they continue to have relapses or not. On average, 65 per cent of people with relapsing remitting MS will have developed secondary progressive MS within 15 years of diagnosis.
- Primary Progressive MS
Primary progressive MS is a relatively unusual form of MS which tends to be diagnosed in older people, usually in their forties or later. From the outset, those with primary progressive MS experience steadily worsening symptoms and an increase in disability. Symptoms may level off at any time, or may continue to worsen. Approximately 10 to 15 per cent of people with MS have the primary progressive form. Unlike relapsing remitting MS, men are just as likely to develop this type as women.
MS is unpredictable. It varies from person to person and can result in a wide variety of symptoms, none of which is unique to MS and many of which may be familiar to those with M.E. Many people experience only a few symptoms and it is unlikely that anyone will develop them all. People can have different symptoms at different times and, although some are very common, there is no pattern that applies to everyone. Some of the common symptoms are:
- Fatigue: an overwhelming sense of tiredness making physical or mental activity difficult and, for some, impossible
- Balance problems and vertigo: walking difficulties, problems with coordination
- Visual problems: blurred or double vision, temporary loss of sight in one eye or both
- Numbness or tingling: commonly in the hands or feet
- Pain: sometimes mild, sometimes severe
- Loss of muscle strength and dexterity
- Stiffness and spasms: tightening or rigidity in particular muscle groups
- Anxiety, depression or mood swings
- Cognitive problems: difficulty with memory and concentration
- Speech difficulties: slurring, slowing of speech, or changes in pitch or tone
- Continence problems: a lack of control over bladder or bowel functions
- Sexual problems: lack of libido, erectile difficulties
MS symptoms can range from mild to severe, from brief to persistent. And not all of them are obvious to others. Pain or fatigue, for example, are often referred to as hidden, invisible or silent symptoms. Hidden symptoms may be more difficult for those unfamiliar with the condition to understand.
Fatigue is a very common symptom with MS, as it is with M.E. In one form or another, fatigue limits the lives of 85 per cent of people with MS. As well as causing overwhelming tiredness for some, it can also worsen other symptoms and visual disturbances, concentration, memory, mobility and muscle spasms, for example.
Some people can find their personal relationships are affected because people do not understand how fatigue affects them. The Multiple Sclerosis Society website and publications can help anyone affected by MS to better understand issues that arise. The website also has personal accounts of people managing their symptoms.
Managing fatigue requires a coordinated approach that involves active participation and involvement from family and colleagues, as well as health professionals.
There are different types of fatigue caused by MS, but treatments may involve a combination of approaches, including drug treatments, changes to daily routine, physiotherapy, good posture and appropriate exercise. Numerous healthcare professionals can help, including: occupational therapists, physiotherapists, GPs, neurologists and MS specialist nurses.
Because MS affects everyone differently, treatment options need to be tailored just as individually. Many treatments have been shown to be beneficial for certain symptoms, but a drug or therapy that helps one person may not benefit another. Appropriate healthcare professionals should always be consulted before someone begins any new therapy or supplement, just as they would with any new drug treatment. Equally, all treatments should be monitored for side effects and to ensure they are of genuine benefit.
Disease modifying drugs can help to reduce the frequency and severity of relapses, whilst many MS symptoms can be effectively managed using a variety of treatments. Specialists, such as occupational therapists, physiotherapists, continence advisors and psychologists, can help with mobility, coordination, continence, and memory or concentration problems. People with MS should discuss their treatment options and concerns with appropriate healthcare professionals who can help identify the best therapies available. GPs can also make suitable referrals.
In November 2003, the National Institute for Clinical Excellence (NICE) published guidelines on best practice for all aspects of MS healthcare in the NHS. These guidelines give people affected by MS a clearer idea of what treatment to expect from the NHS. Copies can be obtained from the NHS Response Line on 0870 1555 455.
If you would like more information on any of the topics covered here, or on any aspect of living with multiple sclerosis, the Multiple Sclerosis Society website has regularly updated information, up-to-date news about MS and on-line message boards.