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Please note: This is a basic revision aid, not a comprehensive and reliable statement of medical fact. These notes should not be used to guide treatment. For reliable information and advice, consult a qualified practitioner.
Multiple Sclerosis (MS), sometimes known as Disseminated Sclerosis can be grouped into four overlapping types:
Approx. 6:10000 in UK. Incidence tends to be higher in temperate regions rather than tropical ones. The highest rates have been found in Scotland, specifically the Orkneys. There are occasional pockets of higher incidence. More common in women than men, with a ratio of approx. 1.5 to 1.
Most commonly 25-35 years, mean age of onset is 32 years, rare before 15 or after 60.
If you have MS, it's important not to draw specific conclusions from these generalisations. MS is a hugely variable condition and this page is intended only to discuss some of the issues OTs might encounter when working with someone with MS. It shouldn't be used to predict the future for someone with MS. Medical generalisations all too often fail to apply in individual cases.
There is no clear understanding of the cause of MS, but there are a few interesting leads. There is a variation from one geographical region to another: low rates tend to be found in tropical countries, high rates in temperate regions. Interestingly, if a person moves from a high risk region to a low risk region (or vice versa), they take their risk level with them -- unless they move before they are about 15 years old. This seems to suggest some sort of environmental cause, perhaps a virus, that takes hold in the early years of life, but no immunological or viral cause has yet been found.
There is a small familial risk -- first degree relatives have approx. two to four times the risk of the general population (Fuller and Manford, 2000), but other sources (CONCAH, 1996) state a risk in siblings of 1:20 (50 times the general risk if the figure of 1:1000 is correct) and 1:4 in identical twins (250 times the general risk by the same criteria).
MS is characterised by demyelinated plaques (areas where the myelin has become stripped from the axons of nerve cells) throughout the Central Nervous System (brain, spinal cord and cranial nerves), though it tends to be more common in the periventricular white matter, corpus callosum and optic nerves. Myelin helps nerves conduct impulses throughout the nervous system and can be thought of as insulating the long, connecting axons between nerve cells, like a protective sheath. Myelin also helps to increase the speed of nerve impulses. When myelin is damaged or absent, nerve impulses can become weak or distorted or become completely blocked. Communications within the Central Nervous System (CNS) and between the CNS and the rest of the body become damaged. The resulting disabilities depend on the site of the demyelinated plaques. During an active phase of the disease, the plaques have an inflamed appearance. Both motor and sensory nerves can be affected by MS.
In remission, nerve impulse conduction in damaged areas is slowed, and is adversely affected by temperature changes (heat is a particular problem, and people with MS often have blurred vision -- Uhtoff's Phenomenon -- after a hot bath, fever or heavy exercise.)
There is great variability in the effects of MS, but any of the following may be seen:
Optic neuritis (inflammation of the optic nerve) is a common early symptom and can result in distortion of the central visual field, reduced colour perception and pain on movement of the eyes. Recovery may not be complete. There may be other problems with vision or eye movement due to brain stem lesions, such as diplopia (double vision due to unequal action of the eye muscles). Other sensory disturbances can include sensory paraesthesias (perhaps a "pins and needles" feeling, or reduced sensation), increased sensitivity to pain (hyperpathia) and perhaps an increased sensitivity to touch or pressure. Trigeminal neuralgia (inflammation of the trigeminal nerve) can cause pain on the face or head often stimulated by touch or cold.
Fatigue is a common problem and is discussed more fully below.
Muscle weakness results not from any direct impairment to the muscles but from reduced nervous control of the muscles. Muscle cramps and spasms may also be seen. The legs are usually more affected than the arms, but it is impossible to predict patterns and some people may have symptoms more akin to hemiplegia. Spasticity, increased reflexes and increased plantar flexion may be seen.
Dysarthria may be evident, and is often a result of brain stem lesions.
Cognitive impairment may occur, but is usually relatively minor. Dementia is uncommon. Therapists should also be aware of the possibility of cognitive disruption due to depression.
Urinary frequency and urgency may occur, as may retension (incomplete emptying of the bladder) overflow incontinence and urinary tract infections. Impotence is common among men.
Extremely variable, due to the difference in types of MS, and the great variation in the sites of the CNS affected. Mean survival from diagnosis is 30 years. It is impossible to make accurate predictions concerning the future course of the disease. Some may continue with their lifestyle relatively uninterrupted, while others may experience severe multiple disabilities. Roughly 50% of people with MS move into the progressive stage after about 10 years on average but if symptoms are mild after 5 years, severe problems are fairly infrequent. There seems to be an average reduction in life expectancy of 5 to 10 years.
Beta-interferon seems to be the most hopeful therapy at present, though there is considerable debate about its efficacy. Muscle relaxants can help relieve spasticity, and some people have found cannabis to be therapeutic for this purpose, though it remains illegal in the UK. Should it be legalised for therapeutic use, it might be interesting to examine any negative effects on cognition and fatigue, as there seems a reasonable chance that any existing symptoms might be exacerbated. Steroids can assist recovery from an attack, but have well documented side effects. Specific treatments can help associated symptoms such as spasticity, depression, ataxia and erectile dysfunction. Sometimes surgery, such as thalamotomy, is used to relieve severe tremor, and occupational therapists may be involved in the assessment for suitability for surgery, but there is an inherent risk of complications such as stroke.
Fatigue is often among the first difficulties faced by people with MS and fatigue management is a vital area for occupational therapy intervention because of the impact of fatigue on all areas of daily living. Occupational therapists working in the community should not assume that people with MS who have had several hospital admissions or out-patient appointments have been made familiar with the principles of fatigue management. A surprising number of people with MS have never heard of fatigue management. However, MS varies greatly from one person to another, so if fatigue is not a problem, there is no need to assume that it will be.
Why fatigue is a problem: Because of damage in various areas of the brain, thoughts and actions require more energy than before. Think of the areas of damage as roadblocks. Each roadblock forces the messages in the brain to take a detour, so movements and thought take increased effort. Muscles with spasticity work against each other, so more effort is needed to complete a task. Depression is a major cause of fatigue for many reasons. Involuntary and poorly-controlled movements force the body to do more work than it otherwise would. Some people find that wrist weights dampen tremor if there is little loss of muscle strength. Spasticity, depression and tremor are treatable causes of fatigue and should be discussed with the rest of the multi-disciplinary team.
Strategies to manage fatigue:
The first step is to address as far as possible any treatable causes of fatigue such as depression, spasticity and tremor. If fatigue persists, the therapist should work with the person in developing a method of fatigue management.
The person with MS is the best qualified person to find the appropriate method of fatigue management, as the experience of fatigue is subjective and varies greatly from one person to another. They should be encouraged to recognise their own warning signs of fatigue, and perhaps to keep a journal of their patterns of fatigue so as to identify the problem areas. If fatigue management is not about learning, education and empowerment, it is unlikely to work. The following principles are often useful:
- Frequent, short rests can be beneficial.
- Find a balance between periods of rest and activity. Regular rest periods should be built into the daily schedule. Rest should be taken before fatigue sets in. The balance can be difficult to find -- too much exercise can induce fatigue, but decreased physical activity can also lead to tiredness and lack of energy.
- Plan in advance and organise the tasks ahead. Prioritise: make sure the most important and valued activities get space in the schedule. A valued leisure activity can boost motivation and well-being, better equipping the person to take on the next task.
- Take things at a measured pace.
- Ergonomics are important. Good, supportive seating posture should be encouraged. Rearrange the environment to avoid unnecessary lifting, carrying or stooping. Use proper lifting techniques -- bend with the knees instead of the back. Use a trolley, if necessary, to avoid unnecessary carrying.
- Simplify tasks where possible. If tasks can be taken on by another person, this is a useful and valid way to tackle fatigue.
- Smoking can increase fatigue as can infection.
- A healthy, balanced diet can help -- involve a dietician. Unnecessarily hefty meals can invoke fatigue as can an inadequate diet.
- Extremes of temperature can exacerbate fatigue -- hot baths, for example.
- Stress can contribute to fatigue, so explore methods of minimising stress. Unrealistic expectations of abilities can cause stress, so reasonable targets can help. Relaxation techniques may be helpful.
Visual deficits (perhaps due to optic neuritis or diplopia) and other sensory challenges need to be taken into account and can impact upon mobility as well as most activities of daily living.
Spasticity is a common problem and techniques to control it should be explored. Muscle spasm and pain may also be an issue and may have implications for seating and hoisting.
Mobility is a common difficulty and may be problematic due to motor control or fatigue. Problems with balance or dizziness may arise. In some cases, wheelchair use is necessary. If wheelchairs are to be used, a full home assessment will be needed, with attention paid to circulation space, door widths, surface heights and knee space, etc.
Cognitive problems, though usually minor, can arise, and must be taken into consideration when assessing need.
Psychological considerations: because MS plaques can appear any where in the CNS, a range of problems can arise and may be organic in nature or reactive. Depression is common, but a euphoric response is sometimes seen, and may cause a tendency to underestimate functional problems or under-report difficulties during assessment. Euphoria can sometimes mask underlying depressive problems.
Planning adaptations to the home is difficult, as consideration needs to be given to likely deterioration, though it is impossible to predict the future effects of the disease. Bathing is a common challenge and is complicated by the fact that hot baths can exacerbate fatigue, so a bath lift may not be the best option. If a shower is to be installed, a level access shower is likely to be a better long-term option than an over bath shower. If a wheelchair is required, more extensive adaptations to the home may be needed. If complex and potentially dangerous equipment such as a stair lift are to be used, cognitive deficits should be carefully considered and, if necessary, cognitive testing may be needed before making a decision.
Be aware of potential problems with sensory paraesthesias. If there is reduced or altered sensation in the legs, there may be an increased risk of burns on hot water pipes. Hot water pipes in accessible areas such as under wash hand basins (particularly for wheelchair users) should be insulated, and radiators boxed in. Radiator controls should be positioned at the top rather than the bottom for wheelchair users. Impaired sensory feedback from the hands may cause challenges in lifting, carrying and writing.
There is sometimes an increased sensitivity to pain (hyperpathia) and perhaps an increased sensitivity to touch or pressure. This should be taken into consideration especially when assessing for seating, wheelchairs and hoists. If mobility is impaired to the extent of needing a wheelchair, pressure care should be considered.
Diet can be important, and a dietician is an important part of the multidisciplinary team. It has been suggested that there is a reduction in polyunsaturated fatty acids in the blood plasma, and CNS, so reduced saturated fat intake and inclusion of sunflower oil and other unsaturated fats in the diet may help. Fish include high levels of long chain fatty acids, and some sources recommend regular inclusion of fish in the diet. Speech and Language Therapists should also be involved when there are challenges around dysarthria or chewing and swallowing.
Difficulties with continence and sexual functioning may also need to be considered.
CONCAH [Continuing Care at Home] (1996): Neurological Compendium. London: CONCAH.
Fuller G, Manford M (2000): Neurology: An Illustrated Colour Text. London: Churchill Livingstone.
If you have any comments, corrections or suggestions about this page, please email me.
Last updated: 16th February 2007. Editor: Mike Griffin, OT (field of practice: community physical disability). Any opinions expressed are the author's own unless otherwise stated. © Copyright OTdirect.co.uk 2000-2007. All material is subject to copyright. Feel free to use it for any non-profit purposes, within your professional judgement, but commercial use is forbidden without permission.
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