Articles on Medical Diseases and Conditions

Category: Managing your Multiple Sclerosis

Managing Your Multiple Sclerosis is not a book about what MS is, its causes and diagnosis. It is a practical guide to its management and there is more information to be found in Multiple Sclerosis – the ‘at your fingertips’ guide, which can be found in your local bookshop, library or possibly your nearest health clinic; also the MS Society can provide you with many information sheets on this subject. This new book was written by popular demand from readers of the first book who wanted to know more about practical steps that they could take in their day-to-day living with MS.

  • 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: Balance

    Socially and physically loss of balance is a difficult issue to manage. Unfortunately, there is no easy solution, as the loss of balance is basically a problem caused by damage to part of the brain – the
    ‘cerebellum’ (or its pathways in the brain stem). Other factors can compound the problem, such as spasticity or weakness in the legs. After a while you will probably adjust to some of your problems and, although you may wish to keep going for as long as possible, the most obvious way of helping yourself is by using walking aids (perhaps a stick or crutches); at least these will help you avoid some painful falls and also signal to others that you are not drunk, but that you have some physical problems with movement.

    Dizziness

    Dizziness (if due to true ‘vertigo’) is when you feel that things around you are moving, or feel that you are moving, sometimes quite rapidly, when in reality neither is happening. This can sometimes be alarming, especially if you feel that you are falling. Sometimes other sensations, like feeling sick (‘nausea’), are associated with vertigo. Dizziness from loss of balance is also related to damage to the cerebellum (or brain stem), the nerve connections to it from the middle ear, or within what is called the ‘vestibular system of the inner ear’. In almost all cases in MS, the dizziness goes away of its own accord after a few hours or days.
    Dizziness can be helped by some drugs:

    • Steroids (particularly intravenous methylprednisolone) can help when the dizziness is both acute and persistent.
    • Diazepam (Valium) is given to dampen down the reflexes of the vestibular system.
    • Antihistamines can provide some help if the symptoms of vertigo or dizziness are mild.
    • Stemetil (prochlorperazine) may be prescribed.

    There is one other apparently strange method that people use: when the vertigo feels worse on moving, exaggerating those movements can sometimes help. Deliberately falling on to a bed (or other very soft surface) on your left and right side, and backwards, three times each way, may ‘rebalance’ the vestibular system, at least temporarily. You may also find that there is a particular position that lessens the vertigo, such as lying on one side rather than another. There is also some evidence that tolerance can develop (e.g. dizziness can be lessened) if you can, with professional help, maintain the position of your head, when the dizziness is at its worst, for as long as possible. Of course, this approach can be rather uncomfortable until tolerance increases.

  • Sensations and pain: Sensations

    Initially strange and sometimes uncomfortable sensations of many kinds are typical effects of Multiple Sclerosis. A person can feel these symptoms but the doctor may to be able to find clear physical evidence of why particular symptoms are caused. They are related to damage to the nervous system. They may take various forms, and are frequently intermittent. Doctors often regard these symptoms as relatively benign because, although they may be irritating, they do not, on the whole, tend to result in major problems in daily functioning. Many people with MS get to know the situations in which these sensations occur and adjust their everyday lives as much as possible to avoid those situations. Some may be uncomfortable but can be tolerated. Others may be helped by remedies that you can use yourself. Yet others may require medical advice, support and treatment.
    It is often felt by doctors that, although it is now recognized that pain is more frequent and often more severe than previously thought, it does not generally lead to decreased mobility, and is not associated with a poor prognosis. This may of fer some comfort to those who have pain from their MS.

    ‘Burning’

    A burning pain can occur in your arms, legs and in other parts of your body. Medically, this is often called ‘dysaesthesia’ and results from abnormalities in the sensory pathways in the nervous system. After exercise, or at night, this burning pain may get worse. Unfortunately, ordinary pain medications do not usually have much effect on this kind of sensation. Antidepressant medications such as amitriptyline may be used for relief if it becomes too problematic, or other remedies, such as antiepileptic drugs (gabapentin and carbamazepine), may be used to try and alter conduction along the nerve fibres, which has produced the sensation.

    ‘Pins and needles’

    MS af fects many nerve pathways in the CNS, and those related to sensations in the body are particularly prone to damage. Depending on where the damage occurs, you may feel all sorts of unusual sensations in those areas. The sensation of pins and needles commonly occurs with the interruption and resumption of nerve signals to particular areas of the body. Closely related sensations, such as tingling, may also appear occasionally, as signals to and from the af fected area vary. Some clinicians treat this symptom as relatively unimportant, albeit a disconcerting, symptom of MS, for it has generally a less direct effect on everyday activities than ‘motor (movement) symptoms’, and is associated with a slower course of MS. As with the burning sensation, there is no specific drug therapy for such symptoms although, if the symptoms are associated with pain, a tricyclic antidepressant or sometimes medications such as carbamazepine and valproic acid (usually given for antiepileptic purposes) can help.

    Trembling

    Most people have some kind of ‘tremor’ (or trembling), albeit slight, as there are several different types. Your limbs will normally be the parts affected, as the course of the disease progresses. The most common is what is known as action tremor, although it can be described as intention tremor, goal-directed tremor, or hyperkinetic tremor. This is caused by damage to the nerve pathways to the balance centre of the brain. The nearer your hand approaches an object when reaching for it, the more your hand trembles, so it then becomes difficult either to pick up or control something like a cup. Other kinds of tremor are much rarer.
    As there are no specific drugs for the treatment of action tremor, doctors tend to try a range of dif ferent ones in the hope that one or other may prove of benefit, but it is difficult to avoid unwanted effects. Drugs known as beta-blockers, such as propranolol, might help. People often tend to develop ways of helping themselves. These include such things as:

    • bracing an arm against a piece of furniture;
    • making the arm immobile for a specific task;
    • working out movements with a physiotherapist that are as smooth as possible;
    • adding weights to an arm, using weighted utensils such as forks and spoons.

    A far more drastic approach to reduce action tremor is through surgery, but currently this operation carries considerable risks of exacerbating other problems, and could make life worse, not better, for you. Various newer surgical procedures to control tremor are under development, including the implantation of electrodes, but many of these are still only experimental and, in any case, may only be useful for a small group of people with MS.

    Numbness

    Numbness is quite a common and upsetting symptom in MS, although it can be only temporary if you have a relapse. There may be other strange and sometimes unpleasant skin-based sensations. Usually the worst of these will ‘wear off ’ relatively quickly, although they may stay for days and sometimes longer. Because sensory nerves, in various parts of the CNS, link to all parts of your body, inflammation or damage to them can produce numbness almost anywhere, but particularly in your feet, hands, limbs or face. You may think the nerve damage has occurred where the numbness is; in fact the damage will be in the CNS, often well away from where the symptom appears. Numbness in the hands can cause difficulties for holding or picking things up, particularly those that are hot or sharp. Check carefully where and how you are walking, if the numbness affects your legs.
    Even though depression may not be present, again tricyclic anti- depressants can help to reduce the feeling of persistent numbness, and intravenous steroids can be used when the numbness is, or appears to be, associated with a relapse.

    Sensations and heat

    The extent to which the symptoms of MS appear to change with temperature differences has been known for a long time. In fact, with what seems now to be extraordinary insensitivity, people with suspected MS used to undergo the ‘hot bath’ test, in which they were given a hot bath. If their symptoms became worse, this was thought to indicate that MS was indeed a possible diagnosis.
    Heat, particularly enhanced body heat, changes the process of nerve conduction, and may result in the sensation of weak muscles and limbs. Heat can also exacerbate other symptoms, such as pain associated with inefficient nerve transmission. Conversely, when the core body tempera- ture is cooler, nerve conduction and muscle function appear to be better, particularly in MS. In general, therefore, people with MS are right to try and avoid situations where their core body temperature is raised.
    Tests have been made on body cooling systems, which could be used to maintain a lower body temperature in hot conditions, or more generally to improve the performance of a person with MS in many dif ferent temperature ranges. Other approaches to the problem have been more limited and functional: the use of cold or frozen gel packs held in special vests, so that working or undertaking other activities in hot conditions does not raise your body temperature to any great degree.

  • 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 during intercourse

    Incontinence

    If you haven’t had one already, visit your doctor for an assessment of the problems you have with incontinence. Try and ensure that you have no urinary infections, which can make your bladder problems worse if left untreated.
    The following advice can help reduce the risk of ‘accidents’ during intercourse:

    • Reduce your intake of fluids for an hour or two beforehand.
    • If you are self-catheterizing, do so shortly before you begin.
    • If you are taking drugs to reduce urgency because of a bladder storage problem, take these about 30 minutes beforehand
    to ensure as far as possible that no spontaneous bladder contractions occur.
    • You may need to ensure more vaginal lubrication, with something such as K-Y Jelly.
    • Check out gently and sensitively positions in which you both feel comfortable, and in which you feel you are less likely to have problems with leakage.
    • If the woman has an indwelling catheter, then several positions may be better than others (remember also to empty the collecting bag, and tape the catheter to prevent it moving): a rear entry position may be easiest to manage, lying on your sides with the man behind; or, while the man kneels, the woman could lie on her back with her legs over his shoulders.
    • Alternatively if the man kneels and, as it were, sits on his knees with the woman in front of him with her legs over his shoulders, then gentle movements in this position should be more comfortable. If the woman has problems with spasticity in her legs, then such a position is likely to reduce the possibility of annoying cramps and rigidity.
    • The male partner could use a condom, which might be useful for other reasons as well.

    Pain

    Low levels of sexual arousal can reduce lubrication in the woman, but it can also be due to damage to nerve pathways in the mid- and upper spinal cord area, which leads to inadequate stimulation of the lower nerve pathways to the genital area; certain drugs taken for other purposes – such as urinary problems – also dry up vaginal secretions. Sometimes lubrication can be helped by direct stimulation of the genital area; or try to set up an environment which is relaxing and conducive to sexual thoughts and experiences. As far as additional lubrication is concerned, K-Y Jelly or a similar water-soluble substance can be very helpful. Substances like Vaseline are not recommended because they do not dissolve in water, and they are likely to leave residues which could give rise to infections. They can also create holes and tears in condoms.

    Spasticity

    Check with your doctor that the general control of your spasticity is as good as it can be. Try and keep your muscles as well toned as possible through regular exercises, and use appropriate drugs such as baclofen as necessary to give additional control.
    There are also certain positions for sexual activity that appear to make the muscular spasms less likely, although it is important that you explore other possibilities than those mentioned below, for you may find another position that suits you both very well. For a man who may have difficulty with spasms or rigidity in his legs, then sitting in an appropriate chair (without arms) would allow his partner to sit on his penis either facing him or with her back to him. For a woman, lying on her side may help, perhaps with a towel or other material between your legs for more comfort. Your partner can then approach you from behind. Another possibility is to lie on your back towards the edge of your bed with the lower part of your legs hanging loosely off the bed.

    Fatigue

    As with other symptoms associated with MS, it is important to discuss this with your doctor who will assess the best means of managing it. Although there are one or two drugs which may help (for example amantadine or pemoline) and which – if prescribed for you – might be taken a few minutes before sexual activity, currently the best help is through various appropriate lifestyle changes.
    Consider when you feel least fatigued. Although this may not necessarily be the time when you feel that you should be having sex – such as in the morning, or during the day, rather than at a more conventional time – you may be less tired and enjoy it more. Rather than thinking of sexual intercourse as the major element, you could agree with your partner to engage in some other less energetic sexual activities
    – such as gentle stroking or foreplay – that you could participate in more frequently. As with so many other aspects of living with MS, it is a question of finding ways to adapt to the situation through experimentation.

  • Sexual relationships: Psychological problems and ‘libido’

    Depression or fatigue, which are indirect (or secondary) symptoms of MS, may play as large a part in the way that you feel sexually as does primary neurological damage. If such symptoms are treated successfully, then your sexual drive (often called your libido) may increase.
    If the primary cause of your decreasing sexual drive lies in primary neurological damage, then this is harder to deal with directly. You and your partner could consider first sensual activity experiences, without you feeling the immediate pressure for sexual intercourse. Some parts of your body will probably be more sensitive than others. Ensure that you make time to enjoy the experiences with each other without feeling hurried or under pressure. As in other relationships where circumstances change, new, and possibly exciting and stimulating, patterns of mutual exploration may need to be learnt or re-learnt.

  • Sexual relationships: Difficulties with erections

    First, it may be helpful just to explain a little of the ‘mechanics’ of an erection. The penis is made up of the ‘urethra’, which runs through it and carries both urine from the bladder and semen from the testes, and which is surrounded by the ‘prostate gland’. On the underside of the penis, and running along its length, is a mass of spongy tissue called the corpus spongiosum. Alongside this spongy tissue are two ‘chambers’ called the ‘corpora cavernosa’ in which millions of tiny pockets fill up with blood during an erection. Special cells in the penis limit the flow of blood into these pockets most of the time, for otherwise there would be a perpetual erection! When these special cells ‘relax’, they allow the pockets to fill with blood, and thus the penis becomes erect, and when they ‘contract’ the blood is expelled and the erection subsides. A range of enzymes and other chemical substances work together to facilitate blood flow into and out of the penis.
    Erections may not occur, either because of vascular problems, i.e. problems in the blood supply to penis, or, and much more likely in MS, problems in the control of erections through the nervous system, which controls the process of erection and ejaculation.
    Managing erectile problems in principle involves attempting to deal with the problems in the nervous system; dealing with problems in the vascular system, and in addition dealing with psychological and related issues. For many men with MS with erectile problems, drugs like Viagra have appeared to provide an immediate and helpful way forward.

    Viagra and other help for erections

    The introduction of Viagra was a breakthrough in the management of erection problems. Two more drugs, Cialis and Levitra, have now been added to the options available. It is important to explain how this type of drug works. They do not repair any of the nervous system damage caused by MS. Essentially they act on the vascular problems in MS, by assisting the penis to fill with blood. They do this by breaking down an enzyme (a chemical messenger in the blood) that is preventing or seriously slowing down the process of engorgement of the penis. By magnifying the effectiveness of the erectile process, even where this was previously weak or virtually non-existent, erections can be maintained as long as the drug effect lasts. These drugs may be able to help such problems in many men with MS; indeed, there is very strong evidence that men with erection difficulties caused by Multiple Sclerosis are likely to benefit from them.
    At present they are taken orally (by mouth) and, because of the relatively slow digestive process, it may be an hour or two before the drugs produce their ef fects – certainly an issue in planning sexual activity. Viagra, Cialis and Levitra affect not just the penile area, but have potential ef fects all over the body, so there may be some side ef fects elsewhere. Your cardiovascular health will be carefully assessed before they are prescribed. Not everyone will benefit, although firmer, more frequent and longer lasting erections have been found in two-thirds to four-fifths of men who used Viagra.
    Because the drugs are costly, and the demand is assumed to be large, the Department of Health has been extremely circumspect about those who can be prescribed them. However, MS is now one of the designated medical conditions by the Department of Health for which these drugs can be prescribed, and so there should be fewer difficulties in obtaining them on these grounds, although there may still be local variations in supply plus, of course, any clinical reasons for their non-prescription.
    Currently there are a number of other drugs under development, which promise similar overall effectiveness to that of Viagra, but with a greater immediacy and convenience of use. In particular the aim has been to ensure as far as possible that spontaneity can be preserved in relation to sexual activities. The forms in which Viagra can be used are also being developed and before long there will be several different ways in which it can be administered.

    Side effects
    With the publicity for these drugs have come reports of some potentially dangerous and unpredictable effects. We need to clarify the position.
    We have already noted that they work on the vascular system. Most reports have centred on vascular incidents, such as deaths from heart attacks. There are several points that need to be made here. In the population at large, impotence and erection problems increase with age, and so statistically much of the demand has come from older men. However, cardiovascular problems – heart disease and high blood pressure – also increase with age. Although these drugs have been found to enhance erectile function in those with such problems, men who are taking medications such as organic nitrates, which reduce blood pressure, e.g. nitroglycerin (trade names Nitro-bid, Nitrostat), isosorbide dinitrate (trade names Isordil, Sorbitrate), pentaerythritol tetranitrate (trade names Penitrol, Peritrate), and erythrityl tetranitrate (trade name Cardilate), may well suffer a dangerous further drop in blood pressure by taking such drugs. Such medications are also likely to be prescribed more to older men. In addition, and a rather obvious point, sexual activity, and particularly sexual intercourse, involves vigorous exercise, and men who have undertaken almost no exercise for several years, perhaps with an underlying undiagnosed cardiac problem, may find themselves in difficulty – as in undertaking any vigorous activity without prior preparation. The doctor prescribing these drugs will understand these problems. However, because many men with MS are in younger age groups than those in which major problems have occurred, it is likely that the difficulties will be found to be fewer amongst most men with MS.

    Other help available

    Even if the nerve pathways from the brain to the penis are damaged in the middle or upper parts of the spinal cord, the pathways in the lower part of the spinal cord may still be intact. If this is the case, stimulating your penis directly, most helpfully with a vibrator, could result in an erection. You could also induce an erection by placing the (non-erect) penis in your partner’s well-lubricated vagina – with your partner sitting astride you. However, it is important that this is undertaken carefully, for if sensation levels are low, your penis might be damaged by being folded over, without this problem or any subsequent injury, being realized at the time.
    There are a range of devices used in treating men’s erectile problems, although many of them are now being replaced with Viagra or other related drugs, because they are less intrusive and more effective.

    Vacuum pumps
    The least intrusive of these options is the vacuum pump, which should be available to you on prescription. A tube is placed over the flaccid penis, sealed at the bottom round the base of the penis, and air is pumped out either manually or by a battery-operated pump. This causes blood to enter the penis and for it to become erect. A band is then slipped from the bottom of the pump around the bottom of the penis, the pump removed and the penis then stays erect with the blood trapped inside. It is important not to keep the band round the base of the penis for longer than 30 minutes, and the placing of the band round the bottom of the penis may require some dexterity.

    Injections, prostheses and aids
    Other more intrusive forms of erectile assistance include penile injections that relax the smooth muscle normally inhibiting blood flow into the penis, thus allowing an erection; or penile prostheses that can be inserted surgically that allow an erection to take place with various forms of mechanical assistance.
    There are a wide range of issues and concerns relating to the use of penile injections and prostheses, and both require an exceedingly well- organized and planned approach to sexual activity, and intercourse in particular, which some have found difficult to reconcile with anticipated emotions and feelings. If Viagra, Cialis or Levitra are not available, then you should seek a referral from your GP or neurologist to a physician specializing in these other techniques.
    There are also a number of artificial aids that do not require medical consultation or prescription, and these may include latex or similar penises, some of which are hollow and can incorporate a flaccid penis. Vibrators and other aids in the form of a penis are also available in sex shops or by mail order.

  • 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.

  • Bowel function

    Even for people without Multiple Sclerosis, constipation is a very common problem, as evidenced by the number of remedies available in chemist shops, but there are some special issues that may make constipation worse, more frequent, more continuous or, indeed, more problematic for people with MS.
    Until a few years ago problems with bowel function were thought to be relatively minor; however, recent research studies, as well as the views of people with MS, have clearly indicated that these can be a real problem. The most common issue is constipation – that is infrequent, incomplete or difficult bowel movements. There may also difficulties with bowel urgency, where there is a need to pass a stool immediately or urgently, or with bowel incontinence, where control of defaecation is ef fectively reduced or lost.

    Constipation

    Constipation is problematic in MS because it can make other symptoms, such as spasticity and urinary difficulties, worse as well as producing pain or discomfort. Constipation may result from several causes in MS:

    • Demyelination may reduce the speed with which the movement passes through the bowel; as moisture is drawn from the stool continuously, the lower the speed, the more the movement becomes dry and hard and difficult to pass.
    • You may have decreased sensation in your bowel or rectal area thus not realizing that a bowel movement is needed, and therefore the stool is left in your bowel for a very long time.
    • You may have too low a fluid intake thus making the stool dry and hard.
    • You may have weakened those muscles that push the stool out and thus have difficulty in this respect.
    • In some cases drugs for other symptoms or for the MS itself may affect either the dryness of the stool, or the capacity to push it out.

    When MS becomes more severe, it is much more likely that people with the disease will have difficulty evacuating their bowels, as various
    body systems linked to this process become less efficient. You may need to undergo detailed medical investigation and get help for this problem.
    For most people with Multiple Sclerosis who have constipation, especially in the earlier stages of the disease, the advice is very similar to that for other people with the same problem. In particular:

    • Your diet should be high in fibre (e.g. bran, cereals, fruit and vegetables), which allows stools to pass more easily through the intestinal tract.
    • Fluid intake should also be increased for the same reason.
    • Getting as much exercise as possible can help, although clearly this particular advice will be less easy to follow by those who are bed- bound or using wheelchairs. In this latter case seek advice from your physiotherapist.
    • Proprietary bulking agents (such as Fibogel, Metamucil, Mucasil), and stool softeners, can help produce regular motions.
    • You could use laxatives, suppositories or enemas occasionally if all else fails, but be careful about using any of these too regularly, because they can actually increase constipation if overused, by slowing down natural bowel function still further.
    • Finally, make time for regular daily bowel habits (see below).

    As medical and related products are often readily available and may be recommended by some to deal with various problems associated with constipation, it is important to describe briefly some of these products.

    • Bulk formers. These are useful when there is inadequate bulk in the motion. They add moisture and content to the stool. The bulk formers should be taken with a couple of glasses of water. They distend the gastrointestinal tract making the passage of stools easier. Motions should pass through in a day or so after their use. Bulk formers are not habit forming and can be used regularly.
    • Stool softeners. If the cause of the constipation is a hard stool, which is difficult to pass, then a stool softener can draw increasing moisture into the stool from body tissues therefore softening it and helping elimination. Again these are not habit forming and can be used regularly
    • Laxatives. These should be used only occasionally; they are not only very habit forming, but also lead to a weakening of the remaining muscular control of the bowel. Harsh laxatives in particular should be avoided, because basically they are chemical irritants of the bowel tract. Softer laxatives, which should only be taken occasionally, can lead to passing motions in 10–12 hours.
    • Suppositories. These, placed in the rectum, both provide chemical stimulation and lubrication. They may be used occasionally to stimulate a bowel movement.
    • Enemas. These should be used only very occasionally because the bowel may become dependent on them if they are used frequently.

    You may have to be patient to try and find the right combination of strategies that works for you. It is likely that a successful overall strategy will consist of a good fluid intake, a diet with high fibre, as much exercise as possible, and a regular time for a bowel movement – 30 minutes after a meal is usually the most opportune time.

    Faecal incontinence

    This has been a neglected area in Multiple Sclerosis. Recent research has revealed that something like two-thirds of people with MS have some bowel problems and, over several months, nearly half, in one study, had some degree of what is described as ‘faecal’ or ‘bowel incontinence’. Of course, what appears to be an involuntary release of faeces produces a very unpleasant situation. There may be a link between urinary and bowel incontinence (from weakened muscles, from spasms in the intestinal area induced by MS, or from a full bowel pressing on the bladder), but the link is not always clear.
    The exact causes of bowel incontinence are not always easy to find, even in the few centres with special facilities for investigating these issues, but there are several pointers to what may be happening in many cases. Involuntary spasms in the muscles affecting the bowel area are probably the most common causes of such incontinence. Sensation may be reduced in the bowel area and you may not be aware that there has been a build-up of faecal material, until an involuntary movement of the anal sphincter occurs. Prior constipation might lead to this build-up and release of faecal material, as well as a lack of coordination in the muscles controlling bowel movements.
    There are a number of ways in which the problems of faecal incontinence may be helped. It is important to ensure that you have bowel movements (and thus bowel evacuation) on a regular basis. You should avoid substances that irritate the bowels such as alcohol, caffeine, spicy foods, and any other triggers to involuntary bowel action that you can identify. For such a symptom, antibiotics may be a trigger, thus you need to avoid their unnecessary use. It is also important to eliminate the possibility that the faecal incontinence is caused by a bowel infection – to test for this possibility you will need to consult your doctor.

    Spasms


    Stabbing pains in your midrif f may be caused by ‘bowel’ or ‘colon spasms’. These are due to either Multiple Sclerosis directly or changes in bowel function and regularity. Changes in diet and supplementary bulking agents may be all that is required to deal with this problem. If it persists, then antispasmodic drugs may calm your bowel or colon.

    Management techniques

    Although constipation and bowel incontinence may look like two separate problems, often they may be linked, so initially it is a good idea to try similar management. This involves establishing what is often known technically as a ‘bowel regimen’. In addition to checking your diet, making a regular time of day in which you try and have a bowel movement can be very helpful. Once this regular time is established, it is important that you stick to it – even though you may not feel the urge to go. You may find that drinking some warm liquid, such as tea, coffee or water, will help. This ‘retraining’ is not an easy task and may take some weeks or even months to achieve, but there is some evidence that it can reduce both constipation and bowel incontinence.
    You can undergo some complex tests for difficult problems with bowel incontinence, but there are still relatively few specialist centres to assess and help manage these problems. Thus for most people with MS, a tried and tested combination of everyday techniques will probably be a good first step.