WHAT IS MULTIPLE SCLEROSIS?

 

Multiple Sclerosis (MS) was first identified in the 1860's by a French neurologist named Jean Martin Charcot, but for virtually a century there was little research into the disabling condition.  It is now considered to be the most common disease of the central nervous system, affecting young adults, with about 85, 000 sufferers in the UK.

MS involves damage to the central nervous system (the brain and spinal cord).  The central nervous system is the body's nerve control centre.  It consists of the brain, the spinal cord running down the length of the backbone, and the optic nerves.  Messages are passed along the central nervous system to various parts of the body, such as the muscles and sensory organs.  Information is also sent back to the central nervous system from the muscles and sensory organs.  Each time you pick up a cup, play a musical instrument or drive a vehicle, you are dependent on the smooth functioning of the central nervous system to be able to carry out such complex and skilled operations.

The messages transmitted via the central nervous system from the brain to the body, or from the body to the brain, affect various nerves.  These are sensory nerves (to do with feeling); motor nerves (to do with movement); and optic nerves (to do with seeing).  These messages are transmitted at very high speeds and so you experience the transmission of the messages instantaneously.  However, in MS, the myelin sheath (the coating around a nerve, similar to the insulation sheath around an electric wire) is thinned or lost completely (demyelination).  This causes a delay or a complete block in the passage of nerve messages.  The body's own defence mechanisms then attempt to repair the damage, which leaves a scar of hard tissue (sclerosis).  This scar (also referred to as plaque or lesion) can further block or delay nerve signals. This demyelination and scar formation happens randomly, in different places and at different times (multiple), but its cause is not known.

The symptoms and severity of MS depend on where exactly the demyelination and scars occur.   Lesions  are most  common  in  the  optic nerve giving rise to pain and blurred vision; in the brainstem or cerebellum, causing vertigo and double vision; and in the spinal cord, causing limb weakness and impaired urinary control.  However, although  specific  lesions  (plaques or scars)  can be identified,  the course of the disease remains very unpredictable.   Symptoms vary  enormously, not only from one person to another but also in the same person from one time of day to another.  MS symptoms can last simply for minutes or days, or linger for weeks, months and even years.  The symptoms of MS are discussed later in more detail in the section headed signs and symptoms.

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WHAT CAUSES MS?

 

Researchers have looked at a number of possible causes- autoimmune disturbances, viral infections, diet, environmental and climatic factors - but their research has been inconclusive.  However evidence increasingly suggests that it is the result of an autoimmune attack by the body on its own myelin or the effects of a viral infection, or a combination of the two.  

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INCIDENCE- WHO GETS MS?

 

If the cause of the disease were known and its course fully understood, it would be possible to predict who would be likely targets of the disease.  However, both the aetiology, or cause of MS, and its cure are still unknown.  Nevertheless, research highlights some interesting data which reveals certain patterns of the occurrence and extent of MS in the population.

Approximately 85, 000 people- about 120 in 100, 000 of the UK population- have multiple sclerosis.  The highest known prevalence has been recorded in Scotland, notably Shetland and Orkney.  There are probably at present 1800 to 2000 people with MS in Northern Ireland and recent statistics reveal that 1 in every 500 people in Northern Ireland will develop the condition at some stage in their lifetime.  The temperature latitudes of between 40 and 60 degrees are the high risk zones for the disease.  In the northern hemisphere this includes the British Isles, northern and central Europe, Iceland, Canada and the northern states of the USA.  In the southern hemisphere, New Zealand, Tasmania and the southern tracts of Australia are included.  MS is definitely more common in white races than in other racial groups.  It is unknown among pure bred Bantus and Eskimos and among native American Indians.  MS is also uncommon among the Chinese and Japanese.  

Unfortunately, MS is a young person's disease.  Its symptoms most often appear between twenty and fifty years.  It is typically diagnosed between the ages of 25 and 35.  More women develop MS than men, the ratio being three to two, and they do so at a slightly earlier age.  

MS is NOT infectious or contagious.  You cannot catch it from someone else.  Nor is it inherited in the usual sense of the word.  However, there is evidence to suggest a genetically determined tendency that increases susceptibility to MS.  About 10% of those with MS have a blood relative with it (parent, brother, sister or child).  Where a sibling is diagnosed as having MS, the risk of another sibling developing it is 1 in 30, and for identical twins this figure increases to 1 in 3.  

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HOW IS THE DIAGNOSIS MADE?

 

A diagnosis is based upon the identification of at least two separate areas of damage in the central nervous system.  Sometimes an indicative diagnosis can be made simply by taking a medical history.  For example, someone with weakness of the legs may remember an episode of short-lived blindness in one eye several years previously.  However, this is really only a 'guessed' diagnosis and further examination or investigation to confirm signs of nerve damage is essential before accurate diagnosis can be made.

Taking a sample of spinal fluid via a LUMBAR PUNCTURE used to be an important diagnostic aid but the increased use of specialist brain and spinal cord scanning has almost eliminated the need for such an invasive test.  The sample of cerebrospinal fluid is analysed for evidence of inflammation and for its protein level and leucocyte count.  Approximately 80% of people with MS have an elevated IgG index or oligoclonal immunoglobulin bands present in the spinal fluid but not in the serum.  However, detection of these bands is not specific to the condition of MS and so further tests are necessary.

Brain scans using magnetic resonance imaging make the diagnosis of MS more accurate and immediate.  The original brain scans (CT scans or computer tomography scans) were not often accurate or sensitive enough to detect damage due to multiple sclerosis.  However, MRI SCANS can very accurately detect areas of damage within the brain and spine.  These scanners can resolve detail in the brain and spinal cord so fine that the individual plaques (or scars) in MS can be seen.  These scans now give the best clues to the diagnosis.

Occasionally nerve tests called EVOKED POTENTIAL TESTS are necessary.  These are relatively simple non-invasive tests that are carried out on vision, hearing or sensation.  They can provide evidence of slowing of conduction through the central pathways of MS lesions and are sensitive ways to detect areas of nerve damage.  Visual tests involve watching a television screen that has alternating black and white squares.  An electrode is placed over the visual cortex and a computer analyses the received visual signal from the television set.  The length of time it takes for the signal to leave the TV set and reach the visual cortex is known and thus a delay in the signal transmission can be ascertained.  Such a delay may indicate damage due to an MS lesion.  In a similar fashion, brainstem evoked potentials involve listening to clicks through ear phones with a recording over the auditory cortex.  Finally, sensory evoked potentials involve stimulating the finger with a small electric shock and recording over the sensory cortex.  

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SIGNS AND SYMPTOMS

 

The symptoms of MS depend largely on which nerves are affected, which is determined by where exactly the lesions are situated in the brain and spinal cord.  Different nerves control different parts of the body and different sensations.  As not everyone will have lesions located in exactly the same places with identical nerve damage, therefore, not everybody with MS will have exactly the same symptoms.

Some of the symptoms people can have include difficulty moving their legs or arms; fatigue; weakness; balance difficulties; loss of, or unusual sensations such as numbness, burning, tingling or pins and needles; pain; spasms and tremors in limbs; bladder problems such as frequency, urgency, incontinence or retention; double vision and also blurred vision; speech problems, commonly slurred speech and problems with memory and concentration.  It is quite common to find that the first symptom of MS is a painful reduction of vision in one eye, known as optic neuritis.  Seventy per cent of people with MS will have optic neuritis during the course of their disease.  It normally affects people aged between 20 and 40 years and women more than men.  Fatigue is probably the most common symptom experienced in multiple sclerosis.  Studies have found that over 85% of people with MS experience fatigue daily and that this fatigue is largely responsible for the degree of disability.  Difficulty with bladder control and walking are also common problems for people with MS.  These two problems often go together because both disorders are due to spinal cord disease.

For many years it was believed that people with MS did not experience pain.  However, it is now thought that perhaps as many as 50% of people with MS experience some degree of pain and for a large number it can be disabling.  Spasticity in MS is a very common problem and can be severe.  The spasms can cause discomfort but are rarely painful.  Perhaps of the problems associated with MS, tremor is one of the most disabling.  An exhausting and involuntary shaking, tremor affects approximately 1 in 7 people with MS.  Recent studies have shown that many people with MS suffer with communication or swallowing difficulties.  In a survey of 203 people carried out by Hartelius and Svensson in 1994, 44% reported speech and voice impairments.  Dysphagia, difficulty in swallowing, is not generally regarded as a common symptom of MS.

Cognitive dysfunction, involving loss of memory and concentration, has not in the past been considered a common or severe problem.  Although, more recently, researchers have given increased recognition to this problem, their findings show that while 50% of people with MS show some cognitive deficits, only 5-10% experience changes severe enough to interfere seriously with activities of living.

People with MS may have any combination of symptoms and each to a varying extent or intensity.  MS symptoms can last for minutes or days, or linger for weeks, months and even years.  These symptoms may also appear and reappear in different combinations.  Symptoms can appear or become more pronounced when the MS is active or in relapse, and may lessen or disappear again when the MS is in remission.  In some people symptoms can fluctuate when the person is tired, upset or anxious. These fluctuations do not necessarily mean that the MS is getting worse; only that the person with MS can have good days and bad days, just like everyone else.  Most people with MS experience it in a mild form with minimal neurological symptoms and suffer limited and usually transitory or temporary disability.  Many authorities suggest that people with MS have a "normal" life expectancy. Only around 20% of people with MS may eventually be dependent on a wheelchair.  People with MS can have good quality and experience of life, including love, marriage, children, work and happiness.

There are several TYPES OF MS which are classified according to the severity and frequency of symptoms.  These types are as follows:-

1. Relapsing/Remitting- In about 2/3 of people, MS takes the form of a series of relapses, interspersed with periods of remission.  On average, a relapse occurs        approximately once or twice every 2 years.  It may last for only a day but can go on for weeks.  Whilst in a period of remission, symptoms that may have been disabling during relapse can virtually disappear.  A remission can last for months or even decades.  In most cases, there is some residual damage after a relapse leading to an incremental disability.

2. Primary Progressive- About 10% of people have a chronic condition from onset in which symptoms gradually worsen over a period of years, without either relapse or remission.

3. Secondary Progressive- About 75% of people whose disease pattern begins with relapsing and remitting symptoms later develop the chronic progressive form..

4. Benign- About 10% of people experience only a few relapses with little or no residual disability.  If this pattern continues over a period of 15 years they are said to have the benign form of the disease.

If you would like to know, in more detail, about particular symptoms of MS and how they might be managed, individual  information sheets on the following are available from RAMS on request: -bladder problems, pain, cognitive dysfunction,  fatigue, bowel problems, spasticity, speech and swallowing difficulties, tremors, visual disturbances and pregnancy.  

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WHAT MEDICAL HELP IS AVAILABLE?

 

No certain cure for MS has been found as yet.  The emphasis is therefore on managing the disease, controlling the symptoms and preventing them from worsening.  There are numerous drugs available on the market to help control individual symptoms of MS.  For example there are specific drugs to help with bladder control (oxybutynin, propantheline, bromide, imipramine, desmopressin), fatigue (amantadine, Vit B12), and spasms (baclofen, dantrolene sodium) to mention just a few.  The most common and widely used drugs in the treatment of combined MS symptoms are STEROIDS.  Most people with MS will have steroids prescribed for them at some stage during their illness.  They can be helpful during a relapse, speeding up recovery and inducing remission.  It is not clear exactly how steroids work but they are known to possess anti-inflammatory properties which can suppress the immune system and reduce the accumulation of fluid around the sites of nerve damage.  They can be given in many forms including tablets, injection into the muscle and injection into the vein.  However, steroids given regularly will make no difference to the long term progression of MS.  There is a very small number of people who respond to long term steroids but for the vast majority this treatment should be avoided.  Steroids have a number of undesirable side effects in the long-term.

There has recently been discussion on the therapeutic use of CANNABIS or similar drugs for people with multiple sclerosis.  Cannabis is known to induce a general feeling of well-being and this feeling can be useful for someone with any form of disability.  Furthermore, studies from the United States have shown a positive effect of cannabis on spasticity.  Unfortunately, cannabis is known to have a number of side effects including increased drowsiness, unsteadiness, problems with concentration and sleep and occasionally more serious complications such as confusion and hallucinations.  Therefore, cannabis is still an illegal drug in the United Kingdom at the present time.  If you would like more information, there is a group called ACT (Alliance for Cannabis Therapeutics) which is campaigning to have cannabis available on medical prescription and for more research into its therapeutic qualities. They can be contacted by Fax on 01 13 2371000 or by post at PO Box CR14, Leeds LS7 4XF.

The future looks promising with the continued efforts of the Myelin Project to identify foolproof causes and cures and with the development of new drug therapies- Betaseron, Beta-Interferon , Co-polymer 1 and, in addition to these, the Cari Loder drug treatment regime which is still under study.  Many of these drugs are at a very early stage of development and their exact effects and, more particularly, their side-effects are yet to be determined.  However, the next few years are an exciting time and offer real possibilities for slowing down disease progression.  

The CARI LODER TREATMENT was developed by Cari Loder herself, an MS sufferer, and was hit upon purely by chance.  The treatment relates to the use of tricyclic anti-depressants, L-phenylalanine and Vitamin B12, in combination as a means of compensating for the effects of nerve damage caused by MS. When taken in combination with L-phenylalanine, tricyclic antidepressants react to raise levels of circulating adrenaline and fire nerve fibres with higher firing potentials, thereby bypassing the fibres which are scarred as a result of demyelination.

Interferons are small proteins produced in cells as a response to a variety of agents, in particular viruses.  Over the last few years there have been a number of small scale studies which indicate that some types of interferon might be useful in the treatment of MS.  These positive studies have recently been confirmed by much larger scale studies conducted in the United States, Canada and Europe.  The first report appeared in April 1993 and involved 372 people with a relapsing-remitting form of MS being treated with a type of interferon called INTERFERON BETA-IB (Betaferon).  Some of the people were given a placebo whilst others received a low dose and others a high dose of the interferon treatment.  All preparations were given by injection under the skin on alternate days.  After two years those who had the high dose interferon had a significant decrease in the number of relapses.  They also had less damage that was visible on MRI brain scans.  These encouraging effects were also seen very recently to persist after four and five years of treatment.

A related compound, INTERFERON BETA~IA (Avonex) given by weekly injection into the muscle, has also been shown to reduce the frequency of relapses and has also been shown to slow down progression of the disease.  The short term side effects of beta-interferons appear to be relatively minor, including flu-like symptoms and irritation at the injection sites.  However depression and suicidal tendencies have been noted.  At this stage it must be emphasised that there is no information available on the risks of long term treatment or on the usefulness of these compounds in people with more advanced disabilities.  However, these are very promising studies and both Betaferon and Avonex are licensed for use in the UK.

COPOLYMER-1 is a synthetic substance that resembles the myelin protein surrounding human nerve fibres.  Early studies over the last few years show that it might be an effective compound in the treatment of MS.  In a large scale study from the United States in 1994, a total of  251 people with relapsing/remitting MS were studied.  Approximately half received copolymer-1 and half received placebo treatment by daily injections.  The number of relapses was significantly reduced by about 1/4 in the actively treated group.  There was also a slight reduction in the progression of disability and there were no serious side effects.

 

Publicity about the interferons and copolymer-1 in the treatment of MS has caused other new drug developments to be overshadowed.  Approaches have been tried which manipulate the immune response.  There have recently been two large scale studies in the USA of INTRAVENOUS IMMUNOGLOBULIN (IVIG) which showed that treated people had fewer relapses than a comparison group.  There is some evidence that this treatment improves recovery in serious relapse.  Other agents that may prove effective in treating MS in the future include MITOXANTRONE and DEOXYSPERGUALINE.  These agents act in various (and often unknown) ways by modulating immune response.  They have been studied in very early trials in MS and have shown initially positive results, particularly in relation to reduction in relapse rate.

Other new approaches to treatment are also beginning to emerge.  It is now known that small proteins called CYTOKINES can exert powerful effects on the immune system by acting as signalling agents, helping to switch on and off the inflammatory response. Interferons are cytokines.  Some of these cytokines are however damaging agents that induce intense inflammation which in turn can cause nerve damage.  Special agents have now been produced which suppress the production of these cytokines, inhibit their use or even stimulate other cytokines to counteract and neutralise them.  Early studies of these cytokine therapies are also producing promising results.

Finally, a whole new class of chemicals has recently been discovered called ADHESION MOLECULES. These slow down and eventually 'catch' the passing white cells, attracting them to the areas of inflammation and damage and inducing them to begin repair.

Overall, a great deal has been learnt about the immune system during recent years.  Scientists are now beginning to manipulate the immune system and by so doing may be able to reduce or even reverse the damage inflicted on nerve cells.  Many of these drugs are at very early stages of development and their exact effects and, more particularly, their side effects are yet to be determined.  However, the next few years are an exciting time and offer real possibilities for slowing down disease progression.

Unfortunately though, whilst the future looks promising, the reality of the majority of present day therapies is that their success appears to be dependent on the type of MS being that of relapsing/remiitting.  However, regardless of MS type, extensive medical research into HYPERBARIC OXYGEN has shown it to alleviate or eradicate some of the disturbing symptoms and produce a possible slowing of the progression of the disease, without the need to take drugs and without the side effects that some of the above mentioned drugs can cause.  

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WHAT IS HYPERBARIC OXYGEN?

Hyperbaric oxygen (HBO) is oxygen at an increased level of pressure - (hyper) means increased (baric) means pressure.  HBO treatment consists of breathing in pure oxygen through a face mask or mouth piece, whilst sitting normally and comfortably in a metal chamber, where the air pressure has been raised.

 

 Oxygen is vital in the healing process, and the theory behind HBO treatment is that oxygen at a higher pressure can suppress inflammation around the scarred and diseased areas of the brain and spinal cord and prevent its spread.  Indeed, research conducted in a number of countries (USA, USSR, Argentina and Italy), shows that oxygen therapy can greatly help some who suffer from MS.  Many patients who benefit from HBO, find relief from all or some of their disabling/disturbing symptoms and help in containing the disease.

Dr Boguslav Fischer of the New York University Medical Centre has conducted extensive and intensive double-blind, controlled trials on the treatment of MS.  He is quoted as saying: -

"HBO produces a possible slowing of the progression of the disease"

Hyperbaric oxygen therapy has long been used to treat decompression sickness, carbon monoxide poisoning, injuries and wounds which have been demonstrated to benefit by well established research.  It is now being increasingly used with promising results in a number of neurological diseases, such as stroke as well as in cerebral palsy and in head and spinal cord injury.  Use of HBO in MS has been controversial, largely because function and expectations have been widely misunderstood.  However, studies have shown that it is beneficial.

In normal air (at sea level), we breathe about 21% of oxygen.  At this level our red blood cells which carry the oxygen around our bodies are almost fully saturated.  In other words, the red blood cells cannot carry much more oxygen.  However, when breathing pure oxygen (100%) under pressure, the blood serum (the clear liquid in which all blood constituents are carried) is capable of taking large additional amounts of oxygen which are then transported around the body.  This procedure is used in emergency life support systems and in intensive care settings.  In relation to MS, breathing oxygen under pressure causes the dilated and leaky blood vessels in MS to constrict back to normal size, thus reducing swelling and cell death.  Also, whilst under pressure, more oxygen is delivered to the bloodstream than under normal pressure so increasing the amount available to help repair.  Many pharmaceutical products will also reduce swelling, but they may also reduce the available amount of oxygen and they certainly cannot replace oxygen.

The most significant benefits are improved balance, speech, level of energy, sensory perception and control of bladder and bowel functions.  Other symptoms also show beneficial change in different people.  It appears that those who combine HBO treatment with physiotherapy find the most marked and consistent improvement.

Are there any dangers in HBO therapy?- In reply to this question it can be stated that over many thousands of treatments in several countries there has never been a fatality or a case of serious injury in connection with HBO treatment in MS patients.  It is true that oxygen, given in exceeded doses, can have toxic effects.  However, the protocol adopted for treating MS patients with HBO is a maximum exposure of 100% oxygen for 60-120 minutes at only 2ATA.  This dosage is only a quarter of the way towards Wright's lower limit for oxygen toxicity. In fact, it has been demonstrated that exposure to 100% oxygen for 4 hours at 3ATA is a safe limit (except in the case of epilepsy).  Again, normal practice falls way below these limits.  HBO therapy uses high standard, safe, well maintained, specialised equipment and is administered by highly trained and experienced personnel.

The most common side effect of HBO treatment is barotrauma, usually in the form of middle ear pressure problems.  However these are preventable and reversible.  It is usual, particularly after each of the first few dives, for people to feel quite tired and perhaps not very clear headed for a while on leaving the chamber.  It is possible that some people may experience a blurring of vision in initial sessions- this is not unusual and may persist in some for up to a few weeks, but does clear in time. There have also been some reports of teeth aching, but again it is slight and temporary.

There are no absolute contraindications to HBO therapy, apart from acute middle-ear or sinus infections as these prevent pressure equilibration.  However, medical advice is sought before treating patients with emphysema, major respiratory infections or a pneumothorax.

The therapy offered is provided only with the knowledge of your consultant or GP, and is conducted within strict regulations by trained personnel.  The course of treatment consists of 20 initial sessions on consecutive week days.  Each session lasts 60 minutes.  These initial sessions are followed by hourly "top-up" sessions, which might vary  from once a week to once fortnightlv or even once monthly, depending on the individual concerned.  Our chamber allows 6 people to be treated simultaneously.  All clients are assessed by our nurse both before treatment and at designated intervals after treatment.  Thus, the treatment regime is designed specifically for the individual's needs.  

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PHYSIOTHERAPY

In its efforts to alleviate or reduce the effects of MS, RAMS believes that physiotherapy has a vital role to play at all stages of the disease.  Physiotherapy is a programme of exercises designed to prevent or relieve any movement disorders, to ease mobility and to reduce the possibility of deformity.  The skill of the physiotherapist is to use exercises tailored specifically to individual needs.

Many MS people are more disabled than they  need to be.  It is not part of the disease process of MS to have backs bent forward, arms or legs stuck in unnatural positions (contractures), or atrophied leg muscles.  These symptoms only develop because of repeated misuse, and inactivity.  It is much easier to maintain existing use of limbs, than to try and regain the use of limbs which have become disabled.  One way of combating spasticity and co-ordination problems is to begin physiotherapy early in the disease when problems may only be minor.  Even if you suffer from severe spasticity, passive exercise, where another person moves your limbs for you, is important each day as it helps to prevent contractures and deformity.

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WHY PHYSIOTHERAPY/EXERCISE IS S0 IMPORTANT

·            It increases the amount of oxygen in the blood and, therefore, it promotes healing.

·            It improves blood circulation and heart rate.

·            It prevents muscles from atrophying or wasting.

·            It keeps joints mobile and prevents stiffness and spasms.

·            It improves posture and balance.

·            It increases stamina, strength and endurance.

·            It increases energy levels, helping to reduce tiredness and fatigue.

·            It helps maintain maximum independence.

·            It can relieve depression.

·            It gives a feeling of overall well-being by toning up the whole system.

·            It helps prevent disabilities which are not part of the MS disease process.

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"IF YOU DON'T USE IT YOU LOSE IT"

 

RAMS physiotherapist is a member of the Chartered Society of Physiotherapists and is trained in neurological problems.  It is necessary to realise that only neurologically trained professionals will have the background to provide the best therapy in MS.  In addition to evaluating problems, assessing needs for mobility aids and, providing information and advice on exercise programmes and equipment, RAMS physiotherapist also takes an interest in continence problems and pain control.  

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NUTRITION- WHY A NUTRITIOUS DIET FOR MS?

 

There is a great deal of scientific evidence suggesting that diet has a significant role in MS.  Studies looking at the areas of the world where MS occurs most found that it was closely linked to the consumption of saturated fat.  It is interesting to note that fat consumption in the Scottish diet is one of the highest in the world and that Scotland has the highest incidence of MS.  Biochemical research shows that levels of saturated fats are higher and levels of polyunsaturated or essential fats are lower than average in some people with MS.  In particular, it has been discovered that people with MS have lower levels of linoleic acid in their red blood cells and nervous tissues than is considered normal.  These polyunsaturated and linoleic acids are extremely important for the construction of membranes and immune system function.  They are found in sunflower and other seed products, as well as oily fish.  Studies have showed that supplementing the diet with a linoleic acid-rich product has a beneficial effect on relapses in early MS.  Therefore the importance of a diet low in saturated fats and rich in polyunsaturated fatty acids in MS has been highly stressed.  

There is no doubt that poor nutrition can actually cause illnesses such as rickets, anaemia and scurvy amongst others, and that when a person has an illness such as a heart disorder, colitis or MS, for example, poor nutrition can make the illness even worse.  It stands to reason that if a healthy person needs a good diet to maintain health, a sick person needs a good diet to improve health and heal or control the illness that already exists.  A healthy diet is of benefit to everyone.  In MS in particular, it can help fight fatigue and infection and help to heal scarred tissue.

Very often MS patients experience constipation due to a change in their lifestyle, such as drastic reduction in physical activity, due mainly to the fatigue and limb disability that accompany MS.  Constipation may also be the result of certain medications.  It can, however, be greatly alleviated by diet.  By increasing the amount of bran in the diet, this removes the need for laxatives which can deplete the body of much needed vitamins and minerals and cause dehydration which can in turn aggravate a number of other symptoms.

Some MS patients have found that certain other symptoms can be controlled by eliminating various foods from their diets.  Shortness of breath, breathing difficulties and catarrh sometimes respond to the removal of milk from the diet.  Difficulty in adjusting to temperature changes, and the frequent running of above-normal body temperatures, can sometimes be alleviated by cutting out cane and beet sugar  

Fatigue that so often comes with MS can often be tackled by eating little and often, for example five small meals a day instead of three large ones.  Worsening of symptoms and muscle weakness can be helped by the avoidance of alcohol.

It has been noted that a wide range of illnesses may have a gluten sensitivity as part of the condition, including ME, MS, irritable bowel syndrome, arthritis and autism.  What is not clear is whether sensitivity to gluten is a contributing factor in the onset of these diseases, or whether it develops later, as the body loses more of its ability to respond to stress.  Either way, many people are finding that giving up gluten improves their health.

People with MS receive dietary advice from a wide variety of sources, much of which is erroneous and may even be harmful.  A survey showed that only 1 1% of the dietary advice came from a GP or Consultant.  RAMS works to rectify this.  RAMS provides an individual eating plan for people with MS. By receiving sound nutritional information from a qualified dietician or nutritionist, people can then better judge which advice from friends, family and other sources is helpful and which is not.

There is no single perfect diet for all cases of MS in all parts of the world.  In view of scientific findings, RAMS advises individuals on diets which may be beneficial in helping their particular and unique circumstances.  The basis of these diets advocates an increase in the consumption of all the essential fatty acids whilst decreasing the intake of saturated fat.  RAMS also suggests an increase in the consumption of vitamins, minerals, trace elements and fibre needed for general health as well as those that maintain the nervous system.  This is achieved by eating food high in nutrients, and avoiding foods that are highly processed.

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DIET RICH IN ESSENTIAL FATTY ACIDS- SOME GENERAL RULES

 

1.                                       Use polyunsaturated margarine and oils.

2.                                       Eat at least 3 helpings of fish each week.

3.                                       Eat 1/2 lb liver each week.

4.                                       Eat a large helping of dark green vegetables daily.

5.                                       Eat some raw vegetables daily, as a salad, with a French dressing

6.                                       Eat some linseeds or "Linusit Gold" daily.

7.                                       Eat some fresh fruit daily.

8.                                       Try to eat as much fresh food as possible.

9.                                       Choose lean cuts of meat and trim all fat.

10.                                     Avoid hard animal fats like butter, lard, suet, dripping and fatty foods such as cream and hard cheese etc.

11.                                     Try to eat wholegrain cereals and wholemeal bread.

12.                                     Try to cut down on sugar and foods containing sugar.

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DIETARY SUPPLEMENTS- THE IMPORTANCE OF VITAMINS,MINERALS AND OILS

OIL OF EVENING PRIMROSE, either with or without fish oil, is perhaps the most common and essential dietary supplement for those with MS.  Evening primrose is a little plant with bright yellow flowers.  The North American Indians first used this plant for medicinal purposes.  They found the extract of this plant has great healing powers for skin conditions and is beneficial to the healing of infections.  Recently, it has been noted that people using an extract from this plant heal more quickly after an operation than people who do not use it.  The use of evening primrose oil has been noted for its benefits in MS, arthritis, skin and menopausal problems.

People with MS have a low concentration of essential fatty acids, plasma, red blood cells and platelets in the nervous system.  This can be rectified or reversed with evening primrose oil.  Evening primrose contains a high content of gammalinolenic acid or GLA.  This is converted into Prostaglandin 1 . Prostaglandin 1 ensures that there are enough T-lymphocytes to fight infection, helps regulate blood pressure and cholesterol and the size and mobility of red blood cells.  It helps prevent thrombosis and inflammation.

ZINC is one of the most important minerals for someone with MS.  This mineral has a significant effect on the body's immune response and has the exceptional property of boosting the person's morale when depression occurs.  VITAMIN B-50 COMPLEX is required for healthy nerves and a healthy nervous system.  VITAMIN B-12 can help reduce fatigue and increase energy by converting carbohydrates into glucose which the body then bums to produce energy.  Research has highlighted that diets low in the mineral MAGNESIUM can lead to fatigue.  CO-ENZYME QIO is an energy booster also.  It is a vitamin like substance found in the mitochondria of every cell, the mitochondria being responsible for the energy generation of cells.  VITAMIN C generally boosts the immune system and fights infection.  Along with natural bioflavonoids and fish oils it can also help prevent inadequate or insufficient blood circulation.  Magnesium and CALCIUM are both known to have a calming effect on tense muscles and so play a role in controlling tremors and spasms.  VITAMIN E is essential in preventing oxidation of unsaturated fats.  VITAMIN A in an emulsified form increases the number of circulating lymphocytes (white blood cells) which help protect cells from damage.  

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COMPLEMENTARY AND ALTERNATIVE THERAPIES

 

Complementary medicine has been defined by academics, orthodox physicians and complementary practitioners as "Diagnosis, treatment and/or prevention which complements mainstream medicine by contributing to a common whole, by satisfying a demand not met by orthodoxy, or by diversifying the conceptual frameworks of medicine" (Ernst et al., 1995).  There is a huge array of complementary treatments available.  In the UK, the most popular therapies are acupuncture, aromatherapy, homeopathy, herbal medicine and the manipulative therapies-chiropractic, osteopathy and massage.  

It is important to emphasise that complementary therapies do not represent disease-modifying treatments for MS, although some therapies might offer benefit in terms of symptomatic relief.  There is a lack of good quality clinical research of complementary therapies in MS, although there is anecdotal evidence, cited by many people with MS, that complementary therapies can be useful.  Many people believe that complementary medicine is inherently safe.  This is not true.  Complementary therapies can and do cause adverse effects.  They may also be indirectly harmful if used incompetently or if they hinder treatment with proven therapy.  There have been many isolated reports of complications of acupuncture, ranging from minor effects such as bruising at the injection site to a report of death.  Some of the more common serious adverse effects are pneumothorax and bacterial infections.  Homeopathy is often thought to be completely free from adverse effects, yet adverse reactions have been reported in literature.  One report describes someone who experienced an exacerbation of MS following  treatment with a homeopathic preparation of brain extracts.  In addition, herbal remedies have the potential to interact with some conventional medicines.  Therefore it is important to seek complementary treatments from highly trained, professional practitioners who should be aware of the benefits and adverse effects.  

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AROMATHERAPY AND MASSAGE

 

Aromatherapists believe that essential oils, extracted from plants, can be absorbed through the skin.  Once the oils have penetrated the skin, they are thought to travel to organs, glands and tissues and to seep into the bloodstream and lymph fluid of the body, the result of which aids in healing.  Also, the natural antibacterial and antiviral properties of essential oils appear to increase resistance to infection.  Each essential oil has its own distinctive properties, which have an effect on both body and mind and also influence emotions.  By far, the best and most effective way of using essential oils in the massage.  The reaction of rubbing is thought to activate nerve endings and stimulate the circulation of blood at the surface of the skin.  Massage is relaxing and promotes a sense of well-being.  

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ACUPUNCTURE

 

Acupuncture works on the principle of there being a series of points in the body, approximately 800, each linked to an organ.  If an organ fails to function during an illness or spell of ill health, the point registers the dysfunction.  The points are understood to be linked together in an imaginary line known as the meridian, which works as a sort of energy pathway.  If the points remain in balance along their meridian, you enjoy a state of health.  If there is a lack of energy, or an excess of it, the meridian becomes sensitive and registers a state of imbalance or illness.  The work of the acupuncturist is to make sure the meridians have an even flow of energy passing through them.  This is achieved by using needles, the pricks of which stimulate specific nerves.  The electrical impulses generated register in the brain, the spinal cord and the affected area.  There are case reports of benefit in people with MS who have received traditional Chinese acupuncture and also some small uncontrolled studies in which improvements were reported.  It is reported that acupuncture may alleviate some MS symptoms such as pain, cramps, pins and needles, tingling sensations and coldness in the limbs.  However, too often, the relief experienced is only temporary and the symptoms treated are likely to reappear.  

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HOMEOPATHY

 

Homeopathy was developed around 200 years ago by a German physician, Samuel Hahnemann.  Homeopathy is based on the principle of 'like is cured by like' (similia similibus curentur) and using highly dilute remedies.  A homeopath will hold a consultation and will prescribe an appropriate homeopathic remedy according to symptoms and personal characteristics.  One author lists 56 homeopathic remedies that could be used in the treatment of a person with MS.  There are case reports of improvements in symptoms in people with MS who have received homeopathic treatment but there is currently no reliable evidence to suggest that homeopathic treatment is efficacious.  

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HERBAL REMEDIES

 

Herbal medicines are obtained solely from plants and contain no added chemicals.  The herb and herbal preparation most commonly associated with use in MS are cannabis and oil of evening primrose respectively.  The benefits of both have been outlined previously.  Another herb, Hypericum perforatum (St.  John's wort), has been shown to be effective in mild to moderate depression and depression has been noted to occur in around 1/4 of people with MS.  Studies have highlighted that Hypericum may have an advantage over conventional antidepressants in terms of adverse reactions.  

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REFLEXOLOGY

 

More than just another form of massage, reflexology can be beneficial to people with MS.  It is based on the principle of the body being divided into zones, each linked to a key point on one of the feet.  By massaging the appropriate area of the foot, it is possible to treat problems in the related body zone or organ.  Simple and harmless when practiced professionally, it often produces surprising results.  

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YOGA

 

It has been established in recent years that in many forms of illness there is some relationship between the manifestation of symptoms and the lifestyle and outlook of the person displaying those symptoms.  The yoga approach in MS is not a cure or treatment, but can be considered therapy.  It seems to provide an antidote to the tensions of MS- both the tensions that arise as a consequence of the disease itself and those that are a reaction to living with it.  Yoga invites you to accept life as it comes and teaches the skills to work in a systematic but relaxed way within the restrictions of a disease or problem area.  Enthusiasts claim that yoga has much to offer that is of significant benefit to those with MS because it can maximise energy, give new tone to the neuromuscular system, have a positive effect on the immune system, improve the function of the glands, build up resistance to illness and keep the body supple.  

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HYDROTHERAPY

 

Water is a natural and thorough cleansing agent, internally as well as externally.  It is much valued by natural therapists.  In continental Europe it is still common for people with MS to be treated with hydrotherapy at clinics in spa towns.  The blood circulation is stimulated by showering with cold and warm water alternately.  Spasms, tremors, stiff joints and pain can be alleviated by bathing in essences of pine and lavender which are excellent for the nervous system.  Hydrotherapy, in short, can promote energy and well-being.  

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HIPPOTHERAPY

 

Hippotherapy is horse riding as a treatment.  It is particularly encouraged as a treatment for MS in Switzerland and Scandanavia because it provides gentle exercise for the muscles and improves coordination and concentration.

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COUNSELLING

 

In all areas of life, the experience of stress, frustration or illness may result in feelings of failure to cope and may in extreme situations lead to feelings of despair.  And, as in all other areas of human activity, the ability to cope is a very individual characteristic.  The type of crisis that many find sad but tolerable, may leave others distraught.  Often, a trained counsellor will have not only the methods, but perhaps more importantly, the time to assist those in a distressed state to cope for themselves. The term ,counselling itself is a highly misused term.  It may be used to refer to anything from a sympathetic listening ear, to medically oriented advice on a condition, probing hidden fears and concerns and providing the individual with the means to confront and deal with them, or a full progranune of psychotherapy.

Counselling gives those with MS an opportunity to explore in a safe, understanding professional relationship what it means for them to live with the condition.  It is, at times, difficult to live with the way MS interferes in your life.  If you have the condition, you may find its existence and symptoms so intrusive and frightening that the need to express what it is like is the only bit of relief you can get.  If you don't have MS yourself, but are close to someone who does, you too deserve space to express your own reactions and needs.  It should not always be assumed that problems and fears lie only with those who have MS.  Children and parents may have deep rooted anxieties and feelings of guilt, partners may feel unable to cope and employers may find it difficult to understand the problems associated with MS.  In all instances, talking things through in confidence with a trained counsellor will allow you to face the experience of MS, and discover the resources within you and the support available from others.  The need for counselling is perhaps most apparent at or soon after diagnosis, although there are of course other times when adjustments to changed situations are more easily made with expert help.  When a diagnosis is first made, whilst there can be a very real sense of relief that at last these symptoms have a name, there are usually unspoken medical and non-medical anxieties which a trained counsellor may be able to resolve.

As each person's needs are different, the expert counsellor uses his skills to focus on you and create the right environment for you to discover for yourself in your own way and time what contributes to or blocks your coping well with MS.  It is to do with unlocking your own inner strengths and resources.

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FINANCIAL HELP

 

Having a disability can involve extra costs- for heating, equipment, transport, accommodation and other everyday needs.  You may be entitled to some form of financial assistance because of difficulties caused by MS.  Many of the organisations listed in the Useful Addresses section on the following page can give further information about this.  In Britain, some benefits a person with MS may be entitled to receive are as follows:-

·           DISABILITY LIVING ALLOWANCE -is a weekly non-means tested, tax-free benefit for people who need help with personal care, with getting around, or with both.  It is made up of two components: the care component, and the mobility component which is for people aged 5 or over.  Both components are for people who become ill or disabled before the age of 65.

·           ATTENDANCE ALLOWANCE - is a weekly, non-means tested, tax-free benefit for people aged 65 or over who need a lot of help with personal care because of illness or disability.

·           DISABILITY WORKING ALLOWANCE - is a weekly, tax-free, means tested benefit paid on top of your wage, if you are in work and aged 16 or over, provided you have savings of £16, 000 or less.  You will also qualify for help with health care costs.

·           INCAPACITY BENEFIT - is paid to people unable to work and, as from April 1995, has replaced both Sickness Benefit and Invalidity Benefit.  Your entitlement and your rate of benefit is reviewed at set intervals.  The review may involve a medical test, depending on your disability.