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
THE
PREVALENCE OF MULTIPLE SCLEROSIS
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.
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.
SIGNS AND
SYMPTOMS
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.
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. 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.
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
NUTRITION in M.S. There is
much scientific evidence indicating that an appropriate nutritional balance
and diet have a positive role in MS. Studies looking at the area of the
world where MS occurs have shown that its incidence is closely correlated to
the consumption of saturated fats. These are present in full fat dairy
products, meat and confectionery.
The brain and nervous system are composed of approximately 60% fat, a large
proportion of which is derived from the essential fatty acids.
Investigations have shown that the levels of essential fatty acids in the
blood have tended to be low in some people with long-standing MS.
One of the essential fatty acids is linoleic acid which is found in
polyunsaturated oils such as sunflower and safflower. It was demonstrated
that patients given unsaturated fats had a reduced number and severity of
relapses and Professor R. L. Swank in the USA has been advising MS people to
adhere to the low-fat diet for 30 years. His findings of reduced relapses
and slowing of the disease progression compare favourably with the natural
history of patients on a normal diet.
In the diet recommended by the Therapy Centres, the consumption of essential
fatty acids is increased and that of saturated fats decreased. This
nutritional programme also includes increased consumption of vitamins,
minerals, trace elements and fibre which are important for general health.
A three-year research study on this diet indicated reduced frequency and
duration of relapses plus no significant deterioration in patient's
condition. See also "Diet
for MS "
The Background:
Oxygen therapy, where the normal amount of oxygen in the air is many times
exceeded, is now being widely used in medical practice, notably in the USA,
Europe Japan, Russia and China primarily to treat carbon monoxide poisoning
and aid the healing of injuries and wounds of different types. It is being
used increasingly in neurological diseases such as stroke and in head and
spinal cord injury.
Its use in multiple sclerosis has been controversial, largely because its
function and the expectations of its effects have been widely misunderstood.
However, studies have shown that it is beneficial. The process by which
damage to the nervous system is caused in MS clearly cannot be prevented by
oxygen therapy, but, as already discussed, the body normally heals itself
using oxygen from the air - giving additional oxygen extends the body's
ability to heal and can limit some of the damage which the disease causes.
Why should this be? Breathing oxygen under pressure causes the dilated and
leaky blood vessels in MS to constrict back to normal size and reduces the
swelling, due to fluid gathering, which can lead to cells dying.
Paradoxically, at the same time, more oxygen is delivered to the bloodstream
so the net effect is to improve and accelerate the normal healing process.
Drugs can also constrict blood vessels but, in doing so, they actually
reduce the available amount of oxygen. It is obvious they cannot replace
oxygen. The aim of oxygen treatment in MS is thus to minimise the amount of
damage being caused, promote rapid healing and limit the scar formation
which can prevent nerve function being restored. Clearly this is most
appropriate as soon as possible after symptoms become apparent.
The main objectives of any useful therapy in the established disease is to
limit further damage rather than expect to cure existing scars. Prevention
is not only better but more realistic here, than cure, and, while there are
many accounts of improvement or stabilisation in the variety of neurological
functions by Hyperbaric Oxygen (HBO) treatment in MS, it has been in bladder
function that positive results have been most frequently described by
researchers.
Measurement of bladder capacity and emptying have shown that oxygen
treatment has a distinctly beneficial effect and a two year study at Glasgow
demonstrated the importance of maintaining regular HBO treatment to prevent
the progressive deterioration in bladder function commonly found with MS.
The value of such prevention of irreversible bladder nerve damage is
measured not only in terms of comfort and well-being for an MS person, but
also in the minimising of the tendency toward chronic bladder infection and
the kidney damage which may have long-term consequences.
Oxygen Treatment, Availability and Provision.
After treatment a short rest with a cup of tea is recommended. Patients are
monitored during the initial course and at its conclusion. After this, a
regime for follow-up treatment is determined, ideally this would be once per
week
Remember, HBO is NOT a cure for MS.
Whilst many MS people report improvements in their symptoms, the main aim is
to stabilise the patient's condition and it has been shown that this can
most often be achieved in the bladder function. There are no side effects of
the treatment, but before commencing a course 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.
Any physical condition other than the MS must be declared (e.g. it is
essential that the ears can be cleared under pressure). During the last
twenty years well over 1,400,000
HBO treatment sessions have been carried out in this country alone
without significant incident. This page was last updated on 16 April 2008 | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||