Articles on Medical Diseases and Conditions

Tag: Multiple Sclerosis

  • Fatigue, cognitive problems and depression: Mood swings and euphoria

    As far as emotional and attitudinal issues in Multiple Sclerosis are concerned, early research suggested that some people were emotionally labile (meaning their emotions fluctuated rapidly), and that other variable emotional symptoms or states arose that appeared to be specific to people with the disease. However, it proved difficult to tell whether the problems were a personal – indeed an emotional – reaction to the onset of MS, or were caused by the Multiple Sclerosis itself. Current research is indicating that there are problems of an emotional kind that might be linked to the disease itself, as well as personal reactions to it.
    Mood swings may be caused by the effects of demyelination in particular parts of the central nervous system that control moods and emotions, or by everyday frustrations and issues that arise in managing and think- ing about the effects of MS. Either way, recognizing that mood swings exist is the first step in being able to manage them more effectively.
    In more extreme cases, mood swings are refer red to medically as a ‘bipolar disorder’, with relatively rapid and severe swings between depression and elation. Medical assistance should be sought in such cases.

    Euphoria

    One of the first symptoms that doctors described over 150 years ago was an ‘elevation of mood’ in some people with MS. This was also called ‘an unusual cheerfulness’ that seemed not quite appropriate in someone with a long-term medical condition. In fact, some of these attributions of
    ‘elevated mood’ were not linked to the Multiple Sclerosis itself, but to the circumstances in which it was diagnosed. However, since that time, the idea that some people with MS may occasionally have what is often described as ‘euphoria’ has become more accepted. This can be linked with mood swings that may take people with MS through a range of emotions from depression, perhaps to anger and indeed to ‘euphoria’ over a period of time.
    The previous clinical concern with euphoria has led to far less attention being paid to the much more serious problem of depression, which we have just discussed. It is possible that, in some people with MS, a euphoric presentation has cloaked an underlying depression. Euphoria is viewed as a widespread phenomenon because of the very positive reactions – the relief almost – that some people with MS feel once diagnosed. Because the process, and the communication more so, of the diagnosis may take some time, some people felt that their symptoms may have been due to even more serious conditions – a brain tumour, for example, or that they were ‘going mad’. Some doctors have treated the, often profound, relief of some of their patients on hearing that they
    ‘only’ have Multiple Sclerosis, as indicating a euphoric state caused by the MS, rather than an understandable relief that they have a condition far less threatening than others they had feared.
    Although inappropriate laughter may occasionally be embarrassing, it seems to be a result of damage to a particular part of the nervous system, and may require professional help to manage – this particular phenomenon of ‘euphoria’ seems to be overemphasized and, in terms of everyday symptom management, other emotional problems, particularly those centred around depression, are more harmful and significant.

    Effects of drugs

    Any drug that has powerful effects on symptoms is likely to have a wider range of effects – what we usually call ‘side effects’ – that we don’t usually want. In particular, drugs that act in various ways on symptoms related to the central nervous system may well have effects on your moods and feelings.
    Steroid drugs in particular – still quite widely used in relation to managing attacks or exacerbations of MS – may have mood-changing properties. These properties are not always predictable, and people can sometimes have quite strong reactions to steroid drugs. Perversely, some people may feel more depressed, while others may feel more cheerful on them. There is something which has become known as a steroid ‘high’, where people can become more active (indeed ‘hyperactive’) on the drugs, and then feel a ‘low’ when they come off them; others may experience quite bad mood changes from such drugs. Try monitoring yourself and get a family member to discuss any changes that they see in you, and then report such changes to your neurologist or other doctor treating you.
    Some other drugs may have mood-changing effects, especially if you suddenly increase or decrease the dose that you are taking. For example, baclofen (Lioresal), a drug very widely used to control spasticity, has been known to produce major effects on mood; for example, if a high dose is withdrawn suddenly, people may feel very agitated, experience substantial mood changes, or even hallucinate. So is sensible to report any untoward reactions that you may have with your drugs to your GP or neurologist before gradually reducing the dosage. Other drugs, such as diazepam (Valium), used for relaxing muscles, may make you feel very relaxed! Sometimes low doses of antidepressants, used to treat urinary problems or some sensory symptoms, may also change your mood.
    Although we don’t want to exaggerate the number of mood or emotional reactions that you might have to the drugs being taken for symptoms, these additional side effects, which can occur relatively soon after you have decreased or increased doses, may be caused by them. If you are in doubt, report your symptoms to your GP or neurologist, and seek their advice as to how best to manage them.

    Management of mood swings

    Family and friends are often the first people to recognize that mood swings are occurring. For all of us, relationships with other people are bound up with knowing what they will do in a relatively predictable way. If this expectation breaks down, as it may do if mood swings (technically described as ‘emotional lability’) are serious, then family relationships may suffer substantially. For some families these problems can be very difficult to handle, and thus external advice and help can be sought.

    Counselling and/or drugs and cognitive behaviour therapy
    After a consultation with your GP or neurologist, you may be able to get counselling or have a systematic discussion of your family and personal problems arising from the mood swings; if counselling fails, a tricyclic antidepressant (such as amitriptyline) might be prescribed. There is also increasing but still unsystematic evidence that fluoxetine (Prozac) may offer some help in this situation. As we noted earlier, previous administrations of steroids – usually to treat exacerbations of the MS – may have prompted some increase in mood swings (see above), in which case a drug such as lithium or carbamazepine might reduce these swings. Cognitive behaviour therapy has been found useful also in people with mood swings in Multiple Sclerosis.

    Self-help
    Often your emotional response to a situation may be just rather ‘too
    strong’ for the particular situation concerned. You could try breathing deeply, pausing before the tears or laughter come, particularly in stressful situations. If you find yourself laughing or crying without any apparent cause – indeed your mood may be totally at variance with this expression of emotion – and it is difficult to stop, almost certainly this is a result of damage caused by MS itself, probably to areas of the brain controlling the release of emotional expression. This problem has to be managed socially, which is not an easy task, but you could be prescribed medications which have some dampening effect on the release of emotions. It would be best to consult your GP or neurologist about these matters.

  • Fatigue, cognitive problems and depression: Depression

    The incidence of depression amongst people with Multiple Sclerosis has been a matter of controversy for many years. In the early years of research it was thought that relatively few people with the condition had ‘clinical’ depression, but more recent research indicates that the level of depression is far higher than was previously thought.
    Recent research suggests that up to 50% of people with MS (compared to only 5–15% of people without) will experience serious depression at some point in their lives, and at any one time perhaps one in seven may be experiencing this kind of depression. It is a very broad subject and could fill a book in its own right. An inspirational personal account on coping in MS is given in Multiple Sclerosis – a personal exploration by Dr Sandy Burnfield.
    Sometimes people ask about the incidence of suicide amongst people with Multiple Sclerosis. Although it is difficult to give precise figures, it does appear that the rate of suicide is higher for people with MS compared with the general population. There may be many reasons for this:

    • Depression is associated with a higher rate of suicide – and as we have indicated people with MS have a higher rate of depression.
    • There are also many other life crisis-based circumstances that may be linked with suicide whether or not people have MS.
    • The consequences of having MS may, however, be linked more with things like general stress, employment problems, and problems with money, family or relationships, than for some other people.
    • Also, when people feel a lack of hope for the future, sometimes suicide may seem an option.

    In all these circumstances, it is very important that all avenues are explored for help, for through the management of depression and feelings of hopelessness, often situations that seem hopeless at the time are then viewed differently. Psychotherapy and or medication can assist greatly here.
    Of course there is a related major debate under way, which is about the extent to which people can, or should be able to end their life if they
    wish – if necessary with assistance – if they are acting rationally knowing what they are doing and in full command of all their faculties. Such assistance is currently illegal in Great Britain and a number of recent high profile court cases have confirmed this position. This debate raises considerable emotions on all sides and no doubt will continue to be a matter of great controversy.

    Management

    As far as depression is concerned, it is important that you seek medical help partly because there are various forms of depression that may require dif ferent kinds of management. It is good that you have recognized that you may need help, because much can be done for you. Initially you may feel that seeking such help is a ‘waste of time’, or indeed carries with it some kind of stigma, similar to what people some- times feel is associated with mental illness or ‘weakness’, but a sensible approach can substantially prevent you feeling miserable and improve your relationships.

    Counselling and cognitive behaviour therapy
    Depending on the nature of the depression, you may be of fered counselling – and this is increasingly available both in general and hospital practice – or, rather more rarely, psychotherapy in larger and more specialist centres. In certain situations, where it may be helpful to discuss the depression in a family context, family therapy might be offered, although this again is very likely to be at the largest and most specialist centres. It is possible that these more specialist forms of therapy will involve onward referral, for assessment through a psychiatrist, for example. Cognitive behaviour therapy has been found very effective in some people with Multiple Sclerosis.

    Drugs
    More usually, you may be prescribed one of the antidepressant medications. Until recently, ‘tricyclic antidepressants’ were the most commonly used drugs, such as imipramine (Tofranil), amitryptiline (Elavil) and nortriptyline (Pamelor). However, another family of antidepressants, called ‘serotinergic antidepressants’, is now being prescribed much more regularly, drugs such as fluoxetine (Prozac), for example. These drugs have to be carefully administered and monitored, so it is important to follow medical advice. A combination of counselling and drug therapy may be needed.

  • Fatigue, cognitive problems and depression: Cognitive problems

    Research has identified two broad areas where Multiple Sclerosis seems to be involved or has effects that are not so much to do with the mind in general, but with what are more neatly and technically considered as cognitive issues on the one hand, and attitudinal and emotional issues on the other.
    Cognitive issues are those that concern our thinking, memory and other skills, which we use to form and understand language; how we learn and remember things; how we process information; how we plan and carry out tasks; how we recognize objects, and how we calculate. It was thought until recently that memory loss and some other cognitive problems were a rare occurrence. However, more recent research has suggested that a range of cognitive problems varying widely in type and severity may be present in many people with MS.
    Of course people with MS, just like anyone else of a similar age and sex, can suffer mental illness or dementia but, clinically, people with MS do appear to have more depression (see next section) compared to other people, and perhaps have what might be called mood swings rather more often. More recently, studies have shown that many people with Multiple Sclerosis have some problems with memory and with what are called their cognitive abilities, and these seem to be associated with the effects of the disease. It is thought that MS could lead to a subcortical dementia but this is not inevitable. We discuss depression and mood swings later in this chapter.

    How to recognize the problem

    We can all change without necessarily realizing the nature or extent of that change – until someone tells us. Sometimes people with MS may be so depressed or anxious that they think their cognitive problems are worse than in fact they are; on the other hand, they may not want to acknowledge them at all, for they do not want to think that MS may affect their cognitive as well as their physical functions. In addition to the general variability of symptoms, an issue that we have indicated is characteristic of MS, we have also noted that previously it has been very difficult to link cognitive performance to any other aspect of MS. However, more recently, studies using MRI (magnetic resonance imaging) have shown that the more general the demyelination the more likely it is that significant cognitive problems will also exist. Moreover, MS lesions in certain areas of the brain seem to be associated with cognitive difficulties. Further work will, it is hoped, be able to identify more precisely the relationship between certain kinds of cognitive problems and areas of the brain affected by Multiple Sclerosis.
    In addition, during acute attacks of MS, it has been observed that cognitive performance – memory and concentration, for example – may get significantly worse and then improve again; on the other hand, if the cognitive problems have arisen gradually and have been present for some time, then it is unlikely that they will improve substantially.
    Family perceptions may be more accurate on occasions but, although we all suffer from memory lapses from time to time, it may be tempting for you or some family members to put down every piece of forgetfulness to the Multiple Sclerosis. To avoid possible uncertainties, concerns or perhaps even recriminations, you should seek an objective assessment of any cognitive problems, if possible with a referral to a clinical psychologist, or more specifically to a neuropsychologist – usually from your neurologist.

    Professional opinions
    Until the results of recent research, many GPs and neurologists did not consider cognitive symptoms to be a major issue in relation to MS. Because the understanding and use of language is quite good in people with MS, in a single or occasional interview or consultation, it may be hard for a doctor to pick up more subtle but still important cognitive prob- lems. As we have suggested, it is far more likely that those who are with you, and see you everyday, will notice these things first. People with MS have found that cognitive problems can be one of the main reasons why they have to go into residential care or why they become unemployed.

    Tests
    Formally, the range and extent of any cognitive problems can be measured and monitored through what are known as ‘neuropsycho- logical tests’, usually given by a psychologist. They would involve some verbal and written tests focusing on things like your memory and your ability to solve problems of various kinds. These tests are becoming more sophisticated and you may be given a group (often called a ‘battery’) of tests that could take perhaps an hour or more to do. Your performance on these tests is then compared to those of normal healthy adults, and it is assumed that, unless there are other explanations, a much lower performance on one or more tests is due to MS. These tests are only given routinely in some clinical centres at present and, because this is still one of the developing areas of research and clinical practice in MS, you may need to attend specialist centres to obtain such an assessment.
    Because some medications may affect your performance in tests, you should make the person who is testing you aware of what medication you are currently taking. The testing process itself may be problematic for other reasons. For example, many of the tests used for people with MS require a degree of coordination and manual dexterity, and this may be compromised by other ef fects of Multiple Sclerosis. Also, a problem in one area of cognition can affect performance in a test in an unrelated area, or it may be difficult to compare tests involving spoken responses with tests involving written or manual responses.

    What might affect cognition?

    Emotional state
    Your emotional state may affect your cognitive performance, but the exact relationship and mechanism is not yet clear. Some studies have shown that depression seems to be related to cognitive performance, and others have shown the opposite.

    Heat
    Heat, or getting hot, may affect your cognitive performance, as it may influence other symptoms from time to time. Although little research has been undertaken on heat and cognition, on the basis of research on other symptoms it would be reasonable to conclude that if, for example, your memory could have been affected in this way, it would be likely to return to normal with a reduction in the temperature.

    Medication
    Medication may also affect cognition, particularly those that have cen- tral nervous system effects, such as sedatives, tranquillizers, certain pain killers and some steroid treatments. You should be aware of this possi- bility while you are doing everyday tasks that require concentration.

    Cognitive problems found in Multiple Sclerosis

    We must re-emphasise that the variability of cognitive problems in MS is very wide, some people do not have any cognitive problems and in others they are very mild. However, for information, the sort of problems that research has revealed are as follows. Memory loss is the most frequently found cognitive problem in MS. This may involve problems with short- term memory – failing to remember meetings or appointments, forgetting where things are and so on. There is also some evidence that people with MS may find it harder to learn new information. There are also difficulties with what is called abstract reasoning in some people with MS – that is the capacity to work with ideas and undertake analysis or decision-making in relation to such ideas. Sometimes speed of information processing may be af fected in Multiple Sclerosis – things seem to take longer to think about and do. It may be more difficult to find words, and concentration can tend to wander more readily. In addition it is possible that capacity to organize things spatially becomes more difficult – for example putting together self-assembly furniture is more of a problem.

    Management

    Drugs
    At present there are no drugs approved and accepted for the management of such problems as memory or concentration in MS. Memory problems are, of course, not limited to people with MS, and there is considerable research in this area. However, the cause of memory problems varies between different conditions, so drugs that might be helpful for people with Alzheimer’s disease, who have very severe memory problems, would not necessarily be useful for people with MS. Nevertheless, there is increasing research to see whether a number of drugs, often originally developed for other purposes, might help people with MS.
    There is some evidence that drugs used to assist fatigue may have modest effects on some cognitive problems. There are currently trials to see whether the drug pemoline might help cognitive function, and preliminary research on amantadine has suggested that it might have some ef fect on information processing. A drug with the proprietary name of Aricept, used for the treatment of memory disorders in Alzheimer’s disease, is being studied to see whether it has any similar effects in people with MS. However, whilst in Alzheimer’s disease this drug appears to increase the availability of a substance called acetylcholine, a neurotransmitter, this does not seem to be relevant to the cognitive problems in MS.
    It is possible that beta-interferons and other recent drugs used to help manage Multiple Sclerosis itself may have some effect on cognitive function, for, as we have noted, that function tends to be more problematic the larger the number of lesions in the CNS. If the speed with which this increase is lessened, then there could be some effect on cognitive function. However, until recently, it has not been usual to include neuropsychological tests in clinical trials of such drugs, so further detailed research is needed and is now being undertaken.
    Finally there has been publicity recently about the possible use of preparations of ginkgo biloba (made from the leaves of the Ginkgo biloba tree which grows in the Far East) for problems of memory and concen- tration. Trials of ginkgo biloba in people without MS have produced mixed results, early trials being promising but a major recent trial suggesting that it has little or no effect on memory and concentration. There have been no systematic trials on people with MS as yet and so no formal evidence that it could assist with their cognitive problems. In any case there are always problems in ensuring the purity of the active ingredient in such a product, and you should be cautious about its use.
    Overall the investigation of possible drug therapies for cognitive problems is a large area of current research and it is hoped that major advances will be made in the next few years in this area.

    Professional help
    This is a very rapidly developing area of professional interest in relation to cognitive problems. Until recently, the main professions in these aspects of everyday living have been occupational and speech therapy. So, as part of the process of managing everyday activities, occupational therapy helps you to organize your environment, as well as your skills, to the maximum advantage. Speech therapy helps you with speech production problems, particularly if you take some time to articulate what you wish to say.
    Some occupational therapists, particularly in North America and now in Britain, are developing special skills to help people with their memory and cognitive problems – often described collectively as cognitive rehabilitation. This is an approach designed to try and improve the everyday functioning of people with cognitive impairments resulting not only from Multiple Sclerosis but also other central nervous system disorders, such as head injury or stroke.
    There are two broad approaches to cognitive rehabilitation. The first of these is to try to restore the lost functions, often through retraining, with the use of repetitive techniques such as learning lists, and helping people to re-acquire skills with progressively more complex tasks. The second is based on the idea that, because it will be difficult to regain the lost functions, compensatory strategies are needed, in which other devices and procedures are used, such as trying to minimize distractions, or using other means of reminding you about activities that you need to do. Both of these approaches are designed to help people manage their everyday lives better despite any cognitive impairment.
    We need to repeat that cognitive rehabilitation, as a formal programme, is not available everywhere for people with MS. At present, following assessments, you will probably have most contact with an occupational therapist, whose skills focus substantially on the abilities needed to accomplish everyday activities, but we expect that many such therapists will increasingly be using at least some of the key techniques for managing problems that you may have in the area of memory or concentration.

    Self-help
    People with MS can be affected by a range of cognitive problems, and it is difficult to advise you precisely without knowing exactly what they are.
    The difficulties often mentioned specifically – concentration and memory
    – are quite common.
    Concentration. Everyone has occasional problems concentrating on things. Sometimes the problem is that we have many things going on at the same time – television, other people talking and a whole range of other activities going on. However, for someone with MS, concentrating on one of these activities – a conversation, for example – can be quite difficult, when so much else is happening. So the key thing is to try and have only one thing going on at a time – a conversation or the television, not both at the same time. You might have to move between rooms to achieve this. Find out when and where problems for you are most difficult, and then work on reducing the distractions to the minimum. Obviously changing your pattern of normal activities to help you concentrate may not be easy, but may be preferable to having continuing concentration problems.
    Memory. There are many ways in which you can jog your memory. Some of these are routine, and may appear overpedantic or fussy for someone who has only minor memory difficulties, but all help to deal with shor t-term memory problems. For example, just making sure that clocks and watches show the right time; ensuring that today’s date is prominently displayed somewhere; having a message board to note activities for today and tomorrow; having a list of activities that you are intending to do, with times and dates, perhaps in the form of a diar y or similar record. Although this might seem almost too formal, note things down that you have agreed to do, or that you and other s think impor tant, so that it doesn’ t appear that you have forgotten it.
    If you have difficulty with reading, check with your doctor whether you have any of the several potential eye problems associated with MS, that may interfere with your ability to read. Secondly, try and find a strategy to read in a particular way to maximize your ability to retain a story line.
    As a broad guideline, the more of your senses that you use, the more likely you are to remember and retain ideas. Most people read things silently. It may be worth repeating what you read out loud, or at least key parts of it; or relate some elements of the story to another person; or write key ideas down. In this way, using more than one of your senses – writing, seeing, hearing and saying – you stand a better chance of remembering the story, or indeed other material. Admittedly, this approach may require some tolerant support from those around you but, if you are making a big ef fort to improve your memory, they will probably feel that they are gaining too.
    You may find that you do not need to go to these lengths to help your memory – you could work out the main lines of the story or newspaper article by ‘skim reading’ so that, although you may have lost the element of surprise (about the ending of a story, for example!), you will have got an overall view of the text.

  • Fatigue, cognitive problems and depression: Fatigue

    Fatigue or tiredness is one of the most debilitating symptoms of Multiple Sclerosis and one that worries many people. Up to 90% of people with MS experience overwhelming tiredness at least some of the time. Fatigue in MS is often associated with:

    • heat (or being hot);
    • activity – using motor skills, or being mobile;
    • sleep disturbances;
    • particular mood states (such as depression – see later section);
    • some cognitive problems that may occur in MS (see later section).

    At present there is no one known cause of fatigue in MS. Some argue that the best way to manage fatigue is to consider it as a symptom arising from several different sources and thus requiring different techniques to manage it. In fact it might rather better to talk of ‘Multiple Sclerosis fatigues’ in the plural. We could distinguish what we might call:

    • normal fatigue resulting from everyday exertion etc., which is managed by rest;
    • ‘Multiple Sclerosis fatigue’, which seems to result from the MS itself and for which it is difficult to find any other immediate cause, and which may well require drugs to control it;
    • muscle fatigue, which may appear in an arm or leg, for example after or during a walk; rest may be needed and cooling may be helpful here;
    • fatigue from depression, often managed through the treatment of the depression itself;
    • fatigue from drugs themselves, occurring as a side effect – being aware of this possibility should prompt you to consult your doctor if fatigue seems to be related to a drug you have taken;
    • fatigue from the underuse of muscles – just as fatigue can result from overuse, it can also result from underuse, it is important to keep your muscles in the best condition you can.
    • fatigue from managing Multiple Sclerosis – living with MS is fatiguing for most people, so pacing your activities as well as taking advantage of as many helpful pieces of equipment as possible will be important;
    • fatigue from loss of sleep – this is of course a problem not just for people with MS and will compound other kinds of fatigue, so the reasons you are losing sleep need to be addressed.

    Management of fatigue

    Although it is important that your symptom is recognized as genuine by medical and other healthcare staff (which has been a problem in the past), you will probably have to manage many of the day-to-day aspects of fatigue yourself, for drug therapies (see below) are often only partially successful.

    Self-help

    • Identify activities that appear to precede the fatigue and avoid them whenever possible.
    • Develop ‘pacing’ strategies, trying to work intermittently with rest periods, or use some other ways of relaxing during the day.
    • When the fatigue seems to be related to particular times of the day, focus your activities at other times.
    • Try longer term ‘pacing’ too, trying to balance activities over periods of days or weeks.

    People with MS may do something that they enjoy or indeed have to do, knowing that they will have a couple of ‘bad fatigue days’ following this activity. However, ‘fatigue management strategy’ tends to be a complicated business, taking a lot of energy in itself to think through all the possibilities that might occur.

    Professional support
    Specific and carefully planned exercise programmes have been found to reduce feelings of fatigue, but only temporarily. Behavioural therapy can help to alleviate other psychological symptoms that might exacerbate the fatigue, but these non-drug professional approaches have not been successful so far for most people with Multiple Sclerosis over the medium and longer term.

    Drugs
    Some drugs have helped, the two most well known being magnesium pemoline (Cylert), which stimulates the CNS, and amantadine hydro- chloride (amantadine; Symmetrel), an antiviral agent. It has also been suggested that fluoxetine (Prozac) may help in managing MS fatigue.
    Some antidepressants, particularly those that have a low sedative effect, may help the tiredness even if you are not clinically depressed. Beta-interferon drugs may have some effect on fatigue if, indeed, they help the immune system.
    Fatigue may be one thing that affects cognition, although it is still not yet clear exactly how this happens. Some people with MS feel fatigued almost simultaneously as they notice problems with their memory or concentration (see below). Self-rated fatigue is linked with certain forms of memory problems, as well as reading comprehension. However, if fatigue is treated with a prescribed drug, it does not appear to influence cognition. In order to try and understand this process, fatigue in people with MS has been compared to that in people with chronic fatigue syndrome (CFS), but it is not clear whether the two are the same; indeed, when fatigue severity is the same between the two groups, people with Multiple Sclerosis showed more widespread cognitive problems.

  • Sensations and pain: Pain

    For many years Multiple Sclerosis was considered, medically, to be a painless disease, probably because the process of demyelination was thought in itself not to be painful. However, people with MS themselves have known for many years that specific symptoms could cause considerable pain, and this is now being recognized.
    Chronic pain is experienced by about 50% of people with Multiple Sclerosis. Although pain is more common amongst people with severe MS, and amongst older people with the disease, almost everyone will experience some kind of pain at some point.

    Trigeminal neuralgia

    Trigeminal neuralgia is a very acute knife-like pain, usually in one cheek, and sometimes over one eye, but it rarely affects both sides of the face. It is caused by the lesions of Multiple Sclerosis damaging trigeminal nerve pathways. Drug treatment usually includes carbamazepine (Tegretol), although this drug does produce side ef fects, which may be a problem. The primary side effect is sleepiness, so the drug may be started in low doses and then given in higher doses until the pain is controlled. It is also possible that phenytoin, which has a milder action than that of carbamazepine, may be used, or less commonly, baclofen, which is usually given for spasticity. Another approach is to try and block the inflammation; if this is associated with a relapse, steroid therapy is given. If there is a continual problem of trigeminal neuralgia linked to several relapses, then a prostaglandin analogue called misoprostal (Cytotec) can bring relief. In some cases, various surgical operations, including the
    ‘gamma knife’, can destroy the relevant nerve pathways. Even if the trigeminal neuralgia reappears, as it can do, then the treatment can be started again, and it will almost certainly reduce the pain.

    Jaw pain

    There are other types of pain that may affect the facial area, which may not be linked to particular forms of myelin damage: temporomandibular joint (TMJ) pain affects the jaw area, or you may get more general migraine or tension headaches. Drug therapy can help counteract this pain, but in each case will be dependent on a careful investigation of the cause of the pain, and particularly the extent to which it appears to be linked to the Multiple Sclerosis, or to something else.

    Pain from unusual posture and walking patterns

    Pain from poor posture when sitting or lying, and from unusual walking patterns, is quite common. In most cases the pain does not result from the neurological damage of MS, but from its effects on movement.
    In fact one of the most common kinds of pain treated by neurologists in relation to Multiple Sclerosis is low back pain, often arising from an abnormal sitting posture or from a way of walking that has developed as a result of damage to the control of leg muscles. This may result in a pinched nerve from ‘slipped discs’, or other back problems, which can also be caused by unusual turning or bending motions. Painful muscle spasms may also result.
    So it is important to pay careful attention to how you sit and how you move in order to lessen such difficulties. You may need to seek advice from a physiotherapist in relation to both posture and movement. Comfort may be obtained by:

    • massage of the back, if carefully undertaken
    • ultrasound
    • TENS
    • specific exercises, to relieve muscle spasms
    • drugs designed to reduce spasms, and finally
    • surgery, if there are disc problems.

    Other painful conditions, particularly painful swelling of the knee(s) or ankle(s), can result through problematic patterns of walking. You must seek careful advice in relation to these conditions. It is possible that orthopaedic doctors, recommending conventional orthopaedic exercises for such conditions, may not fully realiz e that having Multiple Sclerosis could mean that such exercises fail to work. It is likely that the swelling/pain of one joint may be easier to remedy through what is called an ‘assistive device’ (e.g. a crutch) to take the weight off a weaker leg, or a knee brace.

    Spasticity and pain

    Muscular cramps and spasms are known as ‘spasticity’. Several muscles contract simultaneously, both those assisting movement and those normally countering it. These muscles will feel very tense and inflexible – this is because what is medically called their ‘tone’ increases, and movement becomes more difficult, less smooth and possibly rather ‘jerky’.
    Spasticity is quite a common symptom in MS and is often very painful: it can occur in the calf, thigh or buttock area, as well as the arms and, occasionally, the lower back. Spasticity can lead to ‘contractures’, where the muscle shortens, making disability worse.
    There are a number of ways of managing spasticity in Multiple Sclerosis:

    • Use your muscles as much as possible in everyday activities, and undertake regular stretching exercises to help reduce muscle shortening.
    • Specific exercise recommended by a physiotherapist, such as swimming, or undertaking stretching exercises in a pool-based environment, should be done on a regular basis – an important point, as spasticity is likely to be a continuing issue.

    Devices to assist in the management of spasticity
    There are specific devices that may be useful for people with Multiple Sclerosis when spasticity occurs regularly in key muscle groups, and exercises alone do not appear to deal with the problem. There are devices to spread the fingers or toes. What are called ‘orthoses’ – in effect braces – keep the hand, wrist or foot in an appropriate position or prevent ranges of movement that may result from, or cause, spasticity. A particularly useful brace may be one that places the ankle in a good position in relation to the foot and thus lessens the possibility of local muscle contractures, as well as lessening the stress on the knee. It is important that all orthoses are specifically suitable for the individual concerned, as of course body shapes and sizes vary considerably.

    Drugs
    There are several drugs available to help muscles relax, and ensure that as few of your activities as possible are affected. It is difficult to target spasticity specifically, so some people may need medication occasionally, in the day or at night, and others may require more continuous medication. It is difficult to get the balance and the dose right, and this often has to be done on a trial and error basis.
    One of the most common and effective drugs for spasticity is baclofen (Lioresal), but it can have side effects; some people find it hard to tolerate high doses. Effective doses may vary widely for different individuals. Normally this drug is taken by mouth, but other ways of administration are being developed to help people with more severe symptoms.
    Other muscle relaxants, such as the widely used diazepam (Valium) can also be used, but they may have general sedative effects, causing drowsiness; this is why diazepam might be particularly helpful at night. People are also worried about whether they might become dependent on these drugs in the longer term.
    There are some newer drugs in the process of being introduced, which on their own, or in combination with the more established drugs, may target the spasticity more specifically:

    • Dantrolene (Dantrium) tends to reveal and possibly exacerbate any muscle weakness that may be present, and its effects should be carefully monitored.
    • Tizanidine (Zanaflex) is a relatively new drug, and may work in some cases when baclofen and other drugs do not; it can also be used in conjunction with baclofen. It produces more sedation than baclofen but less weakness.
    Some other drugs work best for specific muscle groups in the body – such as cyclobenzaprine HCl, which is useful for the back muscles, although it may work for other muscle groups as well. It can also be used in relation to another drug for spasticity.
    In relation to chronic spasms, which may result in a complete arm or leg being extended or stiff, carbamazepine may be used, although baclofen can be very helpful. Cortisone can sometimes be used to assist short-term control of such spasms – although it is not for long-term use because it has a range of side effects.
    It is possible that any or all of the drugs above may become less effective over time and thus one of the possibilities is to stop taking the drug concerned for a period of time before starting it again.
    There are other drugs undergoing trials at present in relation to the control of spasticity. One of the most promising is cannabis (or, in practice, combinations of cannabinoids – the chemical constituents of cannabis).
    There may be occasions, especially later in the course of Multiple Sclerosis, when treatment needs to be more robust to reduce very severe spasticity. This might take the form of injections, directly into the nerve or muscle concerned, with phenol or alcohol or, more recently, botulinum toxin, which damages the nerve and produces what some call a ‘nerve block’ preventing the spasticity from occurring.

    Spasticity and surgery
    Surgical intervention may be tried in relation to spasticity if other means of control fail. This can take several forms. Nerves controlling the specific muscles of the leg may be deactivated using what is called a ‘phenol motor point block’. This may make the legs more comfortable but clearly does not assist mobility. Other techniques may help spasms in the face – indeed botulinum toxin (Botox), which is increasingly being used for cosmetic purposes, may help small but very irritating facial spasms. Sometimes nerves or tendons controlling specific muscles that are producing major problems might be cut if there are no other easy means of control.
    A relatively recent development is the use of baclofen pumps to deliver the drug directly into the spinal canal to control spasticity. This process is still expensive and is what doctors would call an ‘aggressive’ treatment for spasticity, although it does allow a much finer and more detailed management of the flow of the drug.

    Pain from other Multiple Sclerosis symptoms

    Apart from the types of pain that we have already discussed, there are other sorts that can be associated with MS symptoms, such as that from:

    • urinary retention or infection;
    • pressure sores (later on in the disease), if not treated as early as they should be;
    • eye conditions, especially ‘optic neuritis’, when the optic nerve swells.

    In general, if the source of the problem is treated, the pain will disappear, although the management of the neurological causes of pain is more difficult than management of pain from other sources.

  • Sensations and pain

    Of course, not every twinge, or pain, results from the Multiple Sclerosis. When you visit your doctor, particularly your GP, you may find that he or she puts virtually all your symptoms down to MS itself. Whilst statistically it is probably correct that most of your symptoms will be related to the Multiple Sclerosis, many will not. It is easy for both of you to say ‘Oh, that’s another symptom of MS’ and not realize that, like other people, you can have other everyday problems. It is important that both are recognized in relation to pain as well as other symptoms.
    If GPs do confuse Multiple Sclerosis and non-MS symptoms, this is not through incompetence – even specialists sometimes have similar problems. Most GPs have so few people with MS on their patient lists – often only one or two – that, because of all the other pressing demands on their time, they have not been able to study, and experience, all the many twists and turns of the disease. Try a little persistence if you feel that your symptoms are not being treated as carefully as you wish; you can always ask for a second opinion if necessary.

  • Sexual relationships: Problems for women

    In general women’s sexual problems are cantered on a lack of desire, arousal and orgasm. Lack of desire is the chief complaint among women. A woman’s lack of sexual interest is often tied to her relationship with her partner. It can also be triggered by family concerns, illness or death, financial or job worries, childcare responsibilities, managing a career and children, previous or current physical and emotional abuse, fatigue and depression – as well as by the MS itself. Thus the issue is often trying to deal with a range of factors in managing sexual problems. Nonetheless there is a particular set of problems that may occur as a result of the Multiple Sclerosis, particularly cantered on arousal, and subsequent problems of lubrication.
    The process of sexual arousal is similar in women to that in men: in women the engorgement of the sexual organs (the clitoris and the inner and outer labia round the vagina), and lubrication by internal secretions, occur. For many women such a process is not just an aid to sexual intercourse, but also a considerable aid to sexual pleasure. In MS nervous system control of the process of engorgement is likely to fail – parallel to the process of erection in men. Furthermore, sensations in the breast and genital area may be also affected.
    The usual – and it must be said – still relatively common view in such circumstances is that artificial lubrication, through the use of a lubricant such as K-Y Jelly, is sufficient to deal with problems such as vaginal dryness but, whilst such lubrication can help sexual intercourse, it may well not deal with the complex range of other issues that surround sexual arousal and fulfilment in women.

    Exercises for women

    Although there are several possible causes of your loss of sexual drive, and thus several possible approaches to managing the difficulty, as far as some of the physical components are concerned, the female orgasm involves – amongst other things – the contraction of several sets of muscles around the vagina. There is increasing evidence that exercising these muscles can assist in providing the conditions for better sexual responsiveness. Relevant exercises involve periodically squeezing and then releasing the pubococcygeus muscle – the one that starts and stops urination in mid flow – several times a day if possible. This can help tone the muscles, and possibly enhance vaginal sensations, which may help responsiveness.
    If you have no partner, or indeed wish to attempt to do something yourself to enhance your sexual life, then there are a range of things you might try, including the use of fantasy, or sexually explicit books or magazines, and physical exploration of yourself. Some women use vibrators to provide additional physical stimulation. Although it is difficult to create sexual sensations to order, using one or other of these might help you to regain some of your libido – even if this requires more imagination than usual! Remember that some women without MS do not have perfect and completely satisfying sexual lives!

    Viagra, Cialis and Levitra for women

    In principle, these drugs could help to enhance sexual pleasure by promoting the engorgement of the clitoris and the inner and outer labia. Until relatively recently, although there are reports of individual women who have found Viagra helpful, there have been few systematic studies of women’s sexual response using the drug, and none in relation to women with Multiple Sclerosis. Women may feel that this again shows very particular gender priorities in the testing of such drugs.
    However, although a number of studies show that women tend to report more sexual problems then men, there is less evidence that a drug such as Viagra will assist with many of their problems. By and large, the major problems for many women are concerned with desire and arousal, rather than with the engorgement of their sexual organs alone. In particular, as it has been graphically put, often ‘the most important sex organ for women is between the ears, not in the genitals’. Thus it is not at all clear that many women as might be expected will be helped by the physical effects of such drugs alone, although it is important to note, for some women with MS in particular, the local genital effects of such a drug might be beneficial when there are difficulties, for example, with lubrication. Nonetheless many drug companies over the last two years or so have begun the development and testing of drugs, which potentially may have a range of effects on women’s sexual desire, in addition to similar effects to those of Viagra.

  • Sexual relationships

    Many people are diagnosed with MS at a time when they are, or may be about to become, sexually active in their relationships. The issues associated with how best to manage sexual activity and MS have in the past often proved difficult to discuss with others. However, increasingly, both doctors and other health professionals concerned with MS are aware of the importance of such issues and are able to offer helpful support and advice. In this chapter, we address some of the common worries that men and women with MS, and their partners, may have. Multiple sclerosis – the ‘at your fingertips’ guide contains more information on this subject. We start with a discussion about problems with erections, common issues affecting men with MS, and their sexual relationships.

  • Diagnosing a bladder problem in Multiple Sclerosis

    The most helpful information for a doctor or other health professional to assist in diagnosing your problems is a brief history of any bladder symptoms you may have, for example:

    • What is your major concern about your bladder/urination?
    • How often do you urinate during the day/night?
    • Do you leak when you laugh, or cough, or do you have an accident? How often? In what circumstances?
    • Do you find it hard to begin urinating? Do you feel that you empty your bladder?
    • Do you wear pads or protection? If so how often?
    • When and how often have you had kidney infections?
    • Do you have pain on urinating or blood in your urine?
    • Have you had any formal investigations before, or are you taking any medications?

    If responses to these questions suggest the existence of bladder problems, then it is likely that you will asked to take some tests.

    Tests
    Increasingly there are different tests being used to determine more accurately what the exact problem is. Your GP will probably only undertake
    tests for urinary tract infections, and it will be your neurologist who may refer you to specialists, e.g. a urologist, for other tests, if necessary. The two most significant tests assess:

    • urinary tract infection, and
    • control of urinary flow.

    Tests for urinary tract infection. Doctors are recognizing that urinary tract infections are an increasing problem for people with MS and often associated with retention of urine in the bladder. However, it is important that you ask your doctor to undertake such tests regularly. If your doctor suspects that an infection is present, a ‘mid-flow’ sample of your urine is normally requested and, after the specimen has been
    ‘cultured’ to identify the particular bacteria present, you will be prescribed the most appropriate antibiotic.
    Tests for urinary flow. More and more sophisticated tests, known as
    ‘urodynamic’ tests, are being developed to measure ‘urinary flow’. A more recent test investigates this flow and the amount of urine remaining in the bladder after urination by taking a non-invasive ultrasound picture of your bladder. Of particular importance is the measurement of the amount of urine remaining in the bladder after you have urinated – it is this residue that can give rise to infection. This overall test, called an ‘ultrasound cystodynogram’ (USCD), is gradually replacing one that measures the rate of flow or urine by the introduction of a
    ‘catheter’ (a thin tube) through your urethra (the opening in your body from where urination occurs) to your bladder. The remaining urine then flows out and can be measured. To obtain additional information, further ultrasound pictures might be taken of your kidneys. Very occasionally, a far more intrusive investigation – ‘cystometry’ – is performed, usually only in very rare cases indeed, to allow the examination of the inside of your bladder (almost as a final resort after all other methods have been tried with no success), and when surgery is being considered. Surgery is rarely, however, considered for urinary problems in MS, for it is often associated with a range of side effects and difficulties.

  • Bladder control

    This is one of the most difficult issues to deal with in MS, despite being a very common symptom. Research has suggested that between 80–90% of people with MS have urinary problems of some kind, although they vary widely in type and seriousness. More expertise and resources are now being devoted to dealing with it.
    If particular nerves in the spinal cord are damaged by Multiple Sclerosis, then urinary control will be affected. There are several kinds of urinary control in people with MS that might then be affected:

    • They may urinate involuntarily – either just dribbling a little, or sometimes even more (a problem of ‘incontinence’).
    • They may wish to urinate immediately (a problem of ‘urgency’).
    • People may wish to urinate more often than before (a problem of frequency). When people have frequency at night, i.e. needing to urinate several times during the night, it is called ‘nocturia’.
    • They may fail to empty their bladder (a problem of ‘voiding’).
    • They may find it difficult to begin to, or to continue to urinate (a problem of ‘hesitancy’).

    The major bladder problems in Multiple Sclerosis can be summarized as either:

    • a failure to store
    • a failure to empty, or
    • a combination of both.

    In general the more serious the MS, the more serious your urinary symptoms are likely to be. About 65% of people with urinary problems have difficulties with urgency, or frequency and incontinence resulting from urgency. About 25% have difficulties in relation to urine retention and bladder emptying, and the remaining 10% may have both sets of problems.
    Whilst many of the common urinary problems above that people with MS experience are indeed a result of damage to the nervous system caused by the disease, others may be caused by ‘urinary tract infections’. Urinary tract infections are not caused directly by the MS itself, but are more likely in people with MS because of some of its functional effects – for example through infections from a failure to empty the bladder. Thus it is very important that you are regularly tested for urinary infections. This is particularly important if the bladder problems you have are significant.