Multiple Sclerosis - an introduction

For anyone, the sudden disclosure that something called Multiple Sclerosis (MS) has appeared in their lives - either because they themselves have been diagnosed, or someone close to them has - will be a major shock bringing with it a need for information, advice and reassurance.

This can be a frightening time when authoritative information is sorely needed. Regrettably, despite an enormous amount being known about MS, it is largely hidden behind medical terminology which can be difficult to interpret and thus rarely questioned.

This information has been written for people with MS by people with MS, who know what it means to live with the disease and who better understand your need for information, practical advice and help in managing this illness. We seek to bring this support to those for whom, until now, Multiple Sclerosis has just been a vaguely menacing name


SO WHAT  DOES 'MULTIPLE SCLEROSIS' ACTUALLY MEAN?

This is simple to answer - multiple means 'many' and sclerosis means 'scarring' - a literal description of the damage that is seen in the brain and spinal cord, but it is not a diagnosis because it does not indicate a cause for the disease. Why then do specialists insist that there must be more than one area affected? This is simply because the first description of the disease, by the French neurologist Charcot over one hundred years ago, as "la sclerosis en plaques", is translated as "multiple" sclerosis, implying several symptoms. Yet single attacks - such as optic neuritis or Bell's Palsy - are often the first symptoms of MS but many patients never have another, different attack.

However, the brain scanning technique known as Magnetic Resonance Imaging (MRI), for patients with a single symptom and no evidence of other problems on clinical examination, has shown that about three-quarters of these people already have multiple areas of the brain affected. The patient may never have another, different attack. In these circumstances what can the neurologists say?


WHAT HAPPENS WHEN SOMEBODY GETS MS?

Our nervous system controls everything we do through a highly complex network of nerve cells and interconnecting fibres that run through the body. The disease process in MS can result in structural damage to the nerve cell, to the myelin sheath which surrounds the fibres and to the central core which transmits the signals to and from the brain and the rest of the body. When such damage is present, the passage of these signals can be delayed or partially or completely blocked by the very scars which, in other parts of the body, are the mark of healing. There are preferred sites such as the eye nerves, areas around the ventricles (cavities) of the brain and the spinal cord at mid-neck level. The areas of damage always develop around small veins and are associated with the leakage of proteins and even red blood cells into the nerve tissue. This causes inflammation and swelling.

The cells which are most vulnerable to damage are not the actual nerve cells but those, called oligodendrocytes, which form the myelin sheaths. In recent years, most of the research into MS has been upon the immune system and it has been suggested that there may be links to viruses. But there is no evidence whatever of infection in MS - despite samples of brain tissue having been taken from living patients during an attack in an attempt to culture a virus. So MS is definitely NOT infectious. The immune changes are seen in many different diseases of the nervous system and hence are secondary features.

Although it is frequently stated that the cause or causes of MS have not been clearly identified, some distinctly similar conditions can be noted. For example, divers can develop a form of disease with pathology which is similar to MS, the damage in the nervous system is due to leakage from small veins. In divers, this leakage is formed by gas bubbles in the circulation formed during decompression (air embolism). Similarly a natural disease process can occur due to particles of fatty tissue entering the circulation. This is called 'fat embolism' and this form of embolism can occur in a variety of conditions causing tissue damage, e.g. with fractures.

Magnetic Resonance Imaging has shown that the initial damage in MS is often "silent", that is without the production of symptoms. The presence of the damage may then be unmasked by a problem or problems totally unrelated to the cause of the disease. For example, most patients have discovered that heat can make them worse (and American neurologists have provoked symptoms with the 'hot bath test' since 1937), but this does not mean that hot baths cause MS! They just exacerbate the existing problems. Various other things can provoke attacks especially, for example, bladder infections.


WHO IS LIKELY TO BE AFFECTED?

Recent studies of apparently healthy people using MRI have shown that the areas of damage in the brain typical of MS are very common and affects over 40% of the population. Those who develop MS, that is who actively have the symptoms, are the "tip of the iceberg" and it is usually damage to the spinal cord that results in obvious disability. So any figures quoted about MS are at best rough estimates but there are probably at least 100,000 people with the obvious symptoms of MS in Great Britain. In the population at large, the prevalence is probably about 1 in 700. The disease is more likely to exhibit symptoms for the first time in those people between the ages of 35 and 50 - although signs have been detected in children as young as four, and many people can trace early episodes of the illness back to their teens or early twenties.

The prevalence amongst the children of those with MS is only very slightly higher and it is not clear whether the reason for this is hereditary or simply because people in families are generally raised in the same place. There is recent evidence that some people may have a genetic predisposition to develop MS, but that this is dependent on them being exposed to the right 'trigger'- and there is still a great deal of uncertainty and debate about just what sets off the disease process in individual cases.

The incidence of MS is said to be higher in the North of Britain than in the South. Also it is certainly true that MS occurs more frequently in temperate climates (and in the developed countries) than in the hot climates (or third world countries). However, life expectancy is very much lower in third-world countries and the provision of medical and specialist neurology much less developed.

Many authorities agree that people with MS have a fairly normal life expectancy and only about one in five may eventually need to use a wheelchair. Above all, people with MS can still expect to have a good experience of life, of love, marriage, children and a career.


WHAT SIGNS AND SYMPTOMS DOES MS DISPLAY?

There is no single test for diagnosis of MS and other possible explanations for the symptoms are first eliminated. For a patient to be told they have MS, neurologists consider they need to find evidence that there is at least two sites damaged in the nervous system (two is the minimum number to be 'multiple'). The signs and symptoms of MS depend upon which nerves are affected. Different nerves control different functions and sensations in the body - hence people can experience a variety of symptoms - some of which come on suddenly, others appearing gradually.

These symptoms may include blurred or double vision, strange sensations in and difficulty controlling and moving arms and legs, weakness, fatigue, 'pins and needles', impaired balance and bladder problems. Some people have problems with speech or memory. There are numerous symptoms and anyone with MS may experience a few or many of them - and no two people will have precisely the same spread and severity of symptoms. Similarly, people with MS may experience a variety of symptoms at different times and to varying levels of severity.

The appearance of symptoms is, understandably, alarming. Almost as bad is the uncertainty of how they may develop or what may happen - and the feeling that the whole future of both patients and their dependents is suddenly under threat.

Symptoms in MS can appear or become more pronounced when the MS is active and may lessen or disappear when it is quiet. Often symptoms can feel - and may be - worse when a person is tired, under stress (upset, worried, anxious), or suffering from some common and totally unrelated condition such as a bad cold or influenza, an infection, or injury.

These fluctuations do not necessarily mean that the MS is getting worse, only that everyone has good days and bad days, and that the influence of other, unrelated, conditions is real and should not be ignored.


I'VE HEARD THERE ARE DIFFERENT TYPES OF MULTIPLE SCLEROSIS

There are at least three recognised patterns of MS which have been described by Doctors and, while it is probably more common to have one or the other, each may be experienced by a patient during the course of their life with the disease.
l. Relapsing / Remitting (RR) The majority of people with MS have a disease pattern with relapses (attacks) and remissions (passive periods). In a relapse, the MS is active and nerves are being damaged; new symptoms may appear and existing ones worsen. A relapse may last only a few days, or continue for months. In remission the MS symptoms may still be present because of the damage that has already occurred to the nerves. But these symptoms can often lessen, level off or improve during remissions - which can last for months or years. MRI findings have demonstrated that remission is the normal event with this MS pattern.
2. Chronic Progressive  (CP)  Estimates vary, but perhaps a quarter of people with MS over the age of 40 experience a gradual worsening of some or all symptoms over many years. In this 'chronic progressive' form, major relapses or remissions are not normally experienced, although symptoms may fluctuate from day to day (the 'good days' and the 'bad days') or sometimes over longer spells.
3. Chronic Stable In this form, the existing symptoms do  not go away or vary much and the disease produces no new symptoms even over a long period of time. Often this is described as the MS having 'burnt itself out'.


WHERE CAN I GET HELP - IS THERE ANYTHING I CAN DO?

Not surprisingly people will often go through a period of shock when MS comes into their lives. Their GPs will have tried to provide help, but the questions people want to ask may take some time to identify and as time passes more queries may emerge. But, often, people do not want to bother their GP or even their families with these problems, and so even the most straightforward of concerns may grow from a molehill into a huge mountain.

Recognising this, and the fact that people with MS sooner or later tend to want to fight back and to regain and optimise control of their lives, over sixty self-help centres have been set up throughout the UK to provide information and to put in place the facilities, the treatment standards and the knowledge to aid symptom management and fight back against MS.

These Centres liaise closely and operate within recognised protocols to maintain common, high standards of conduct employing professionally qualified therapists as appropriate. Therapies are provided only with the knowledge and agreement of a patient's GP.

Just as important, the Centres have access to up-to-date information on research and welfare developments in MS, and, as self-help groups. MS National members have direct experience and knowledge of MS in all its manifestations and are thus in the best position to give day-to-day help and advice to both those who are newly diagnosed and those whose MS is more established.  Carers and family members are also well provided for in this way.


SO WHAT THERAPIES ARE ON OFFER AT THESE CENTRES?

A number of simple, drug-free therapies are available at nearly all locations, comprising Oxygen Therapy, Physiotherapy, Dietary Guidance and Counselling. Many Centres also offer supplementary therapies such as Yoga, Massage and Reflexology. All therapies are administered by health professionals, many of whom also work within the NHS at hospitals or out-patient clinics.