What is multiple sclerosis?
The prevalence of multiple sclerosis
Signs and symptoms
Types of multiple sclerosis
Help from the Therapy Centres
Physiotherapy for MS
Hyperbaric oxygen therapy
Nutrition in multiple sclerosis
For anyone, the sudden disclosure that something called Multiple
Sclerosis has appeared in their lives is likely to be a major shock which
brings with it a need for information, advice and reassurance.
For someone who has just been told that they have this disease, or who has someone close to them in this situation, this can be a frightening time when
authoritative information about MS and how to deal with it are sorely needed. Regrettably, despite an enormous amount being known about MS, it is
largely hidden behind medical terminology which is difficult to interpret and thus rarely questioned.
This information is reprinted from a booklet written for people with MS by people with MS, who know what it means to live with the disease and thus who better
understand your need for information, practical advice and help in managing MS. It seeks to bring this support to those for whom, until now, Multiple
Sclerosis has just been a vaguely menacing name.
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, Magnetic Resonance Imaging (MRI) of patients, with a single symptom and no evidence of other problems on clinical examination, has shown that
about three-quarters of these patients already have multiple areas of the brain affected. The patient may never have another, different attack so, in
these circumstances what can the neurologists say? MRI has also shown this in children as young as four, so MS is not, as frequently stated, confined
to adult years.
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 or
fibre 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
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 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.
Research is continuing on possible genetic factors in MS 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.
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
are 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. 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 dependants 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.
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.
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.
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).
Not surprisingly people will often go through a period of shock when MS
comes into their lives. Their General Practitioners will have tried to provide help, but often the questions people want to ask will take some
time to identify and be developed and, as time passes and symptoms may become more apparent, more queries may emerge. But, often, people do not
want to bother their Doctor 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, under
the umbrella of the former charity Action and Research for Multiple Sclerosis(ARMS), over sixty self-help branches were set up, throughout the U.K, to provide information about MS and to put
in place the facilities, the treatment standards and the knowledge to aid symptom management and fight back against MS.
In succession to ARMS, the therapy centres have formed themselves into two mainly geographical groupings: The Federation of Multiple Sclerosis
Therapy Centres ( now the National group) and Multiple Sclerosis Therapy Centres (Scotland). These Groups liaise closely together to ensure that their member Centres
operate to and conform with recognised protocols and maintain common, high standards of conduct employing professionally qualified therapists
as appropriate. GPs will be advised of their patient's intention to take oxygen therapy and if they would like more information about the therapy
and how it may help their patient, they can contact the Association's medical adviser direct.
Just as important, the Centres have access to up-to-date information on research and welfare developments in MS, and, as self-help groups, Federation 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 where MS is a long-term continuing problem.
Contact details for Multiple Sclerosis Therapy Centres (Scotland)
and for individual Centres
(See also Support and Help)
Both research and a wealth of "user" experience show that physiotherapy has
a vital role in containing the effects of MS. At Therapy Centres professionally qualified physiotherapists specialising in the treatment of
MS provide both individual and group remedial treatments. Individual sessions provide the basis for trained assessment of the MS person's
particular areas of difficulty and the exercise routines best needed to control and improve these conditions. The individual's progress can
thereafter be monitored and his/her programme adjusted to suit any changes in condition as soon as they become detected.
Exercise is never easy (except for fanatics!) but people are only asked to do what they are capable of and what is right for their MS state. Taking
"physio" in a group or class helps most of us to maintain a disciplined approach to regular exercise and turns this essential effort into an
enjoyable social occasion too.
In spite of the variety of symptoms of MS, there are certain important factors similar to them all. Hence different people with different symptoms
can benefit greatly from the same set of exercises.
Some of the symptoms of MS, such as muscle weakness or spasm, occur as a secondary symptom to the initial nerve damage, therefore if the body is
persuaded to move normally - even if its reflex responses have diminished - the adverse effect that abnormal movement has on muscles will be delayed.
The aims of neuro-physiotherapy are:
To improve and maintain joint mobility
To improve and maintain balance and co-ordination
To delay muscle spasms
To maintain general fitness
and most important of all .......To maintain normal patterns of movement
These in turn will help limb control, reduce spasticity, improve strength, aid walking and act against further secondary complications.