At MS-UK we believe in giving people information that allows them to manage their Multiple Sclerosis as effectively as possible. Not least in this process is helping you to recognise symptoms and explore the treatments that will suit you best.
When you have MS, the temptation is to think that every ache and pain is related to the disease. Symptoms of MS are unpredictable and vary from person to person as well as time to time, but the type and severity of your symptoms will also be affected by whether you are tired, hot, fighting infection or just feeling ‘under the weather’. Remember that symptoms are not necessarily linked to your MS and if you have any ongoing issues you should seek advice from your GP.
What causes MS symptoms?
In multiple sclerosis, the protective covering of the central nervous system – myelin – is attacked and damaged, causing interruption to the usual flow of impulses along nerve fibres. Because this damage occurs at various sites, the symptoms each person experiences can vary enormously.
These areas of damaged myelin are referred to as ‘lesions’ or ‘plaques’. Sometimes damage is temporary and the body is able to make a partial repair but at other times the damage is more severe and becomes permanent.
While the following list of symptoms may seem daunting – particularly if you have only recently been diagnosed with MS – there are treatments to help manage almost all of them. Not everyone with MS will experience all of these symptoms and many of them will improve during periods of remission.
Above all, remember that you don’t have to simply put up with MS symptoms. Almost all can be treated, so don’t suffer in silence! Talk to your GP, neurologist or MS nurse about any symptoms that are causing you problems.
Why does MS cause balance problems?
Almost every part of our brains is used in some way or another to help us maintain the complicated process of staying upright. The cerebellum plays a particularly important role and if this area becomes damaged by MS the brain may not be able to fully compensate for missing or incorrect messages, or may send out misleading responses to the muscles. Similarly, interruptions to communication between the brain and the rest of the body can cause problems; for example, if the brain says ‘move’ but the message doesn’t reach the leg, the result can be that the person falls over. The medical term for this loss of co-ordination is ataxia.
A lack of co-ordination and unsteadiness affects posture and limb movements and often manifesting itself as clumsiness, unsteady gait, impaired eye and limb movements and speech problems. For some people with MS, these are temporary issues, but for others, more long lasting. These effects can have a real impact as it can appear as if the person is drunk, especially if there are no other visible symptoms.
In cases where the inner ear is affected vertigo may be experienced. If there are sight problems – for example double vision – unsteadiness and balance issues may result. Muscle spasm, spasticity in the legs and tremor can also impact the ability to balance, and numbness can reduce an individual’s perception of the way their feet are touching the ground, making walking more tentative and falling more likely.
There is no specific treatment for balance but some certain medications, can allieviate balance problems as part of their efficacy. These drugs, although not specifically prescribed for balance, may, as a side effect, actually reduce these problems.
For example, people taking Low Dose Naltraxone (LDN) have experienced a range of benefits which include reduced spasm and tremor thereby aiding their balance. are .sometimes used to alleviate symptomsPrescribed as a direct aid for improved mobility, Fampyra. is a symptom management drug that has been shown in late stage clinical trials to improve walking speed by 25 per cent in some people with MS. Because balance problems have the potential to lead to falls so, they should be assessed by a physiotherapist or neurologist to determine the best course of treatment.
Why does MS cause bladder and bowel problems?
Many people experience bladder and/or bowel problems at some point in their lives – not just those with MS. However, in MS, messages between the brain and the bladder or bowel can become impaired and sensations in the body can be altered. A number of nerves and muscles are required in the action of emptying the bladder or bowel and an interruption in these messages can result either in not feeling the need to go to the toilet, or feelings of extreme urgency or frequency.
These problems are embarrassing for the person concerned but it is important to realise that similar problems are common; for example, it is estimated that around 6 million people in the UK have bladder problems – that’s 10% of the population. Your symptoms should always be investigated as the cause may have nothing to do with your MS.
Bladder and bowel problems can affect your everyday life as you are likely to be concerned about going out, where the nearest loo is located, or that you might ‘have an accident’. But not talking about the problem will not make it go away. Consult with your GP or MS nurse who will advise you on the treatments available.
A number of drugs can be used to ‘calm’ the bladder, making it less sensitive and so avoiding the need to pass urine so frequently. Sometimes these are used in conjunction with exercises to strengthen your bladder and increase its capacity. The medication you are taking for your MS may have side effects that create bowel problems such as constipation, so these will be investigated together with your diet and the use of other treatments.
No matter what problems you are having, there is no need to suffer in silence. Your medical professional will be able to put together a combination of treatments to help you manage the problem in a way that allows you to carry on your day to day activities.
For more information on the causes and treatments of bladder and bowel problems, download our Choices leaflet.
Why does MS cause fatigue problems?
MS causes two types of fatigue. Primary fatigue is a direct effect of the disease and is caused by the attack on myelin in the body’s central nervous system. The slowing of messages from the brain and spinal cord together with muscle weakness make the individual feel overwhelmingly tired. Secondary fatigue occurs when the body tries to compensate for MS symptoms such as spasms, pain or bladder problems that can result in a loss of sleep. Certain medications, stress and depression can also cause secondary fatigue.
Fatigue can be a real problem because it is an invisible symptom and difficult to describe. For some people with MS, it is the symptom that affects them the most. However, many people find that fatigue comes and goes and a period of feeling completely exhausted may be followed by a period when they have much more energy.
Such overwhelming tiredness can interfere with day to day activities or even affect the ability to think clearly or concentrate, often referred to as brain fog. Some people experience sudden and extreme tiredness, while others find their limbs feel heavy or their grip is weakened. Even vision and speech can worsen but this will be a temporary effect that will improve as the fatigue recedes.
Finding out what exacerbates your fatigue is one of the most important steps you can take. It may be that heat, humidity, a hot bath, over-exertion, a heavy meal, smoking, stress, or even a food allergy can make your fatigue worse. If it is triggered by another MS symptom – for example, sleep disturbance – then treating that symptom effectively is likely to help solve the problem. Talk to your medical consultant or MS nurse. Planning ahead can also help; if you have a busy day coming up, try to rest beforehand and conserve your energy. Fatigue management courses are sometimes offered at hospitals. It is worth asking if there is one available to you in your area.
Despite using up energy, regular exercise will leave you feeling more invigorated and less fatigued. It is important to listen to your body and to stop when you feel you are tired, without over exerting yourself. Your physiotherapist or an MS Therapy Centre will help you devise an exercise programme that suits you. Feel free to call one of our advisors at MS-UK, who will talk to you about the types of exercise that might suit you.
If heat and humidity are a problem, dress in layers and use a fan to help you cool down. Avoid hot and humid locations if you can, and try clothing items such as Kool-Ties or Cooling Vests.
The drugs Amantadine and Modafinil are sometimes used to treat fatigue. Amantadine can improve muscle control and reduce muscle stiffness, while Modafinil (although not specifically licensed for use in MS) is sometimes prescribed by neurologists to help combat extreme tiredness.
There is no definitive research that suggests supplements can improve fatigue but some people seem to benefit from acetyl L carnitine, vitamin B12, magnesium and co-enzyme Q10.
For more information on the causes, effects and treatments of fatigue, download the MS-UK Choices leaflet.
Why does MS cause foot drop?
The damage that MS causes to the myelin surrounding nerves in the brain and spinal column results in both muscle and nerve problems. Sometimes these problems affect the muscles of the foot and ankle, which means flexing the ankle in order to walk in a ‘heel-toe’ fashion becomes difficult. As a result, the toes touch the ground before the heel and the foot tends to drag along the ground.
The most obvious effect is that the person is more likely to fall or trip because of the difficulty they have in walking. A further effect can be fatigue, because more energy and concentration is required in order to walk. People often tend to lift their leg higher or swing from the hip in order to try to compensate.
An ankle splint, known as an orthosis, can help hold the foot in a rigid position to make walking easier. A technique known as Functional Electrical Stimulation (FES) is sometimes used to stimulate nerves and help restore function. FES is a means of producing useful movement in paralysed muscles. Electrical impulses are applied using either skin surface or implanted electrodes and course muscles to contract in a controlled manner. Applications are found in MS, spinal cord injury, stroke and cerebral palsy to assist standing, walking and hand function. More information can be found at the National Clinical FES Centre - http://www.salisburyfes.com/.
Why does MS cause heat intolerance?
Hot conditions cause nerve transmission to slow down. For people who have MS, damage to the myelin means that nerve impulses are already under strain and therefore hot conditions can cause their symptoms to worsen. These effects can be caused by a change in body temperature as little as one-quarter to one-half of a degree. The scientific name for heat intolerance is anhidrosis.
Over-heating can cause blurring of vision (known as Uhthoff’s symptom), fatigue, general tremor, intention tremor, decrease in cognitive function and memory problems. This intolerance is so common in people with MS that for years a ‘hot bath’ test was used to diagnose the condition. The person would be immerse in a hot bath and tested to see if neurological symptoms appeared or worsened.
It is important to remember that although heat and humidity can worsen MS symptoms, this worsening is only temporary and no actual tissue damage is being caused.
Drink lots of fluids to help prevent dehydration, preferably water or diluted fruit juice. Sucking on ice cubes or ice lollies can help, as can being in an air conditioned environment or having a cold bath or shower. Cooling products such as a mist spray or cooling gel in a wristband or scarf can also be very effective.
See our sections below on vision disturbances and tremor for more information.
Why does MS cause L’hermitte’s sign?
Named after a French neurologist who published an article on this condition in 1924, L’hermitte’s sign describes an electric shock-like sensation which radiates down the back and into the legs when the neck is flexed. This is a sign of nerve damage that can be seen when the neck is in a flexed position and the corresponding nerves are stretched. The condition is associated with early MS but isn’t regarded as diagnostic because it can be caused by types of arthritis, injury or trauma, or can be a side effect of radiotherapy to the neck area. Patients with a meningioma – a type of brain tumour – experience L’hermitte’s sign and even a simple vitamin B12 deficiency can cause nerve damage and give rise to this symptom.
Incidences of L’hermitte’s sign should be investigated to ensure that the cause is related to your MS. It may be that nerves are under pressure due to another condition or to an injury and this needs to be ruled out. The sudden electric shock-like pain that L’hermitte’s sign produces spreads from the neck down into the arms, the spine and the legs. It can be triggered by bending the chin towards the chest, as in doing so the nerves are stretched. The pain is sudden but very short-lived, usually a second or less.
Treatment for L’hermitte’s sign is rarely required as the pain is usually transient and doesn’t last long enough for pain medication to be effective.
Why does MS cause mobility issues?
Multiple sclerosis attacks the myelin sheath surrounding the nerves, blocking or distorting the transmission of nerve impulses to other parts of the body. Mobility issues happen when messages from the brain fail to get through to the muscles or when damage to the nerves has occurred. This loss of strength or co-ordination can result in difficulties with walking.
When strength and co-ordination are impaired there is a subsequent loss of mobility; the scientific name for this type of co-ordination difficulty is ataxia. Commonly it is the action of moving your legs and placing your feet on the ground that presents problems, although any part of your body can be affected, not just your legs. Balance problems and vertigo can also affect the ability to walk, as can severe tremor.
Any loss of mobility will affect your everyday life and should therefore be assessed by your health professional. If you would like to talk to one of our advisors about this or any other symptom of MS, contact us by phone 01206 226500 or by email firstname.lastname@example.org.
Why does MS cause the hug or girdle effect?
This is a spasm-type symptom that is one of the more unusual effects of MS. Between each of our ribs are tiny muscles called intercostal muscles. These hold the ribs in place but provide flexibility at the same time. If these muscles go into spasm, the result can be uncomfortable or painful. This is sometimes referred to as ‘banding’.
People with this symptom of MS describe a burning or tight sensation which spreads around the rib cage, causing a crushing feeling that can range from uncomfortable to very painful. Sometimes it is accompanied by pins and needles. Most commonly felt around the ribs, occasionally the effect is experienced in the hands or feet.
Individuals with MS who experience the hug or girdle effect do not always have the same degree of intensity of pain. For some, it is no more than an uncomfortable feeling, which passes without the need for any treatment. Others, however, need pain relief to deal with the spasm. Analgesic cream, warmth and painkillers are all used to provide relief. Your medical professional will discuss how best to manage your pain and will bear in mind any other drugs you are taking.
Why does MS cause muscle weakness?
Muscle weakness is common in people with MS. The problem is associated with damaged nerves that are not able to transmit messages properly and as such is a problem with the nerves rather than the muscle itself. Because of this, exercising to the point of exhaustion will not help build up the muscle and, in fact, can make the weakness worse. However, a sensible exercise routine will help because it is vital to maintain your muscle tone – weak and un-used muscles will simply continue to weaken.
Weakness in both legs (paraparesis) or one leg (monoparesis) can lead to problems with walking and balance. A lack of strength can make bowel problems worse, and as weakness and fatigue are closely linked, one often exacerbates the other. Some medications used to treat MS can cause weakness. Baclofen is widely used for muscle spasticity but if the dose is too high it can lead to weakness and loss of muscle tone.
Exercise is vital to retain your muscle tone and function. Research suggests that people who keep up their level of fitness manage to slow down the effects that MS has on their muscles. Swimming, walking and cycling are all excellent forms of exercise but if you are unable to do these, other more gentle exercises can be devised to help keep you fit. Your physiotherapist will be able to provide you with strengthening exercises or you may like to join a yoga or pilates class. If you tire easily, remember to prioritise your activities and conserve energy where possible.
For more information, see our Exercise page.
Josephs Court, MS-UK Centre of Excellence
Why does MS cause optic neuritis?
Optic neuritis is a term used for inflammation and damage to the optic nerve that serves the retina in the back of the eye. MS can cause demyelination of the sheath surrounding this nerve resulting in vision impairment.
Not everyone with optic neuritis will be affected in the same way. Vision can be moderately or severely impaired and one or both eyes can be affected. About 58% of people experience blurring of vision and about 54% of those suffer complete blindness (although this may be in just one eye). Pain can be present, sometimes in the eye itself or as a more generalised headache. Reduced colour vision occurs in all cases of optic neuritis, particularly in relation to the colour red. Visual flashing sensations can be present and over half of those affected by optic neuritis will experience Uhtoff’s symptom – where cases worsen with heat or exhaustion.
Your medical professional will observe your symptoms and may carry out a scan or an electrical test to the optic nerves (called a visual evoked potentials test).
The good news is that most people recover well. Around 80% show signs of improvement after three weeks and over 90% begin to recover within five weeks. Recovery is often complete and even in the most severe cases, patients recover at least some sight. Further improvement in vision can take place up to a year after symptoms begin, although a few people are left with long term visual impairment of some sort.
Treatments include corticosteroids, usually given intravenously, to alleviate inflammation and shorten the duration of the attack. Copaxone and other beta interferons have been shown to reduce the probability and severity of recurrences, as well as alleviate other symptoms of MS. It has been suggested that supplements such as vitamin D, vitamin E (in high doses) and vitamin A may help aid recovery. Alternative remedies include Devil’s Claw, Bromelain, Lutein, Beta-Carotene, Zinc, Selenium and Copper, as well as the essential fatty acids found in Omega 3 and 6, Flax Seed Oil and Evening Primrose Oil.
If you have other sight issues not related to optic neuritis, see our section on visual disturbances below.
Why does MS cause pain?
Over half of those with MS will experience pain at some stage. The intensity of pain is sometimes described by patients as between 4 and 6 on a 1 to 10 scale. Pain can be caused by spasm, optic neuritis, trigeminal neuralgia (an intense stabbing pain down one side of the face), or by general muscle problems which lead to musculoskeletal pain. Generally, pain is either classified as neuropathic (nerve pain) or musculoskeletal (nociceptive pain). The cause of pain in MS is an irritation or interruption to the central sensory pathways to and from the brain. Pain may occur more frequently in older people or those with a long history of MS.
Pain may be low intensity and continuous or more intense and transient. Some people with MS have chronic pain, i.e. long term and difficult to control. Living with this type of pain can have a very real effect on your lifestyle and ability to carry out day to day activities. As well as being hard to bear, it can be demoralising and depressing – see our section on pain control below.
However, not everyone will experience this type of pain. Some people with MS have only mild pain and others have pain that has nothing to do with the disease itself, for example, related to a back injury. Your medical professional will help to identify the cause of your pain and talk to you about how it can be controlled.
Pain can be described as a burning or tingling sensation, numbness, tightness, stabbing or sensitivity. Professionals divide pain into acute or chronic: acute pain is of the intense, sharp or shooting type that is short lived or intermittent and often comes on quite quickly – equally it can disappear quickly too – whereas chronic pain is defined as that which lasts for more than one month; its onset is often slow, it can fluctuate in severity and sometimes never goes away completely.
Treatment will depend on the nature and severity of your pain. Drug treatments, physiotherapy or other types of therapy may be recommended. If traditional treatments are not effective you may be referred to a pain management specialist who will attempt to reduce your pain to a level that is bearable for you. Not all hospitals have a Pain Clinic, so in order to find your nearest Clinic contact The British Pain Society. The Society’s contact details and more information on pain and its management can be found in our Choices leaflet and ‘other support’ section.
Why does MS cause sensory disburbance?
Many people with MS report sensory disturbances of some kind. These are caused by interrupted nerve messages within the body’s central nervous system.
MS can lead to many different types of sensory disturbance such as pins and needles, burning, crawling and – often the most commonly felt sensation – numbness. Sometimes these disturbances are not troubling but at other times they can be painful. These achy, burning sensations, or a feeling of tightness or banding are known as ‘dysesthesias’ and are classed as neuropathic pain symptoms.
Sensory disturbance of the legs may or may not be related to a functional abnormality of the legs or the bladder. This can sometimes be the first presenting symptom before MS is diagnosed. Because there is often no motor involvement with the sensory disturbance, patients are told it is related to stress or ‘neuritis’.
If the sensory disturbance is causing pain, that pain will need to be managed. Consult your GP or neurologist and refer to our MS symptoms section on pain.
Why does MS cause spasm?
Spasms are sudden involuntary contractions of a muscle or a muscle group resulting from damaged nerves. They can be triggered by bladder and bowel problems or infections, so if spasms start for no reason or suddenly become worse, it is worth investigating causes other than your MS. They can also be aggravated by irritations such as skin breakdown and ulcers.
Most spasms occur in the legs and arms, although less commonly they can occur in the throat. Sometimes, spasms will be painful or cause numbness. If they interrupt your sleep pattern they are likely to make fatigue problems worse and if they occur in your legs, you may be at risk of falling.
Your physiotherapist can help by providing stretching exercises and advice on posture and positioning. Occupational therapy advice may be useful to assess your safety needs during periods when spasms are active. If spasms affect your throat muscles you may experience speech problems, or occasionally, problems with swallowing, and you may be referred to a speech and language therapist.
Drug therapies include baclofen or gabapentin. If these are not effective or cause unacceptable side effects, carbemazepine, clonazepam, dantrolene, tizanidine and, in some cases, Botox may be used.
Talk to your medical professional about how to control the spasms you are experiencing. Our advisors will be pleased to discuss any aspect of life with MS, including symptoms, treatment options and lifestyle adaptations. Contact us on 01206 226500 or email email@example.com
Why does MS cause spasticity?
In MS, messages from the brain to the muscles become interrupted or confused and the muscles can respond by going into spasticity or spasm. This involuntary muscle contraction or stiffness can be painful, producing a lack of co-ordination, a deformed posture and a shortening of the range in your limb movements. Sometimes it is a permanent feature but it can be transient, brought on or worsened by factors such as fatigue, heat, humidity, infection, sudden movements, position changes or even tight clothing. Spasticity is most commonly experienced in the legs.
Spasticity can create feelings of pain or tightness in and around joints, and can cause low back pain. Ironically, it increases rather than decreases muscle tone, allowing a person to stand up well, although walking can be laboured. Spasticity includes spasms, which are powerful, uncontrollable and sometimes painful muscle contractions; clonus, which is a repetitive movement, such as a constant foot tapping, and contracture, when muscles become shortened and fix the limb in one position.
Left untreated, spasticity can lead to complications such as frozen or immobilised joints and pressure sores. However, treatment can be very effective and includes:
Your physiotherapist will assess the degree of spasticity and recommend ways to alleviate your symptoms. These may include exercise, medication and a change to your daily activities. Stretching exercises can also help relieve your symptoms.
- Drug Treatments
There are two major anti-spasticity drugs that have good safety records, although they will not cure spasticity or improve muscle co-ordination or strength. Most commonly used is baclofen (Lioresal), which is a muscle relaxant that affects the nerves in the spinal cord. Side effects include drowsiness and a feeling of muscle weakness. In severe cases of spasticity, that do not respond well to oral therapy baclofen can be given by a baclofen pump intrathecally (into the spinal fluid). The baclofen pump is surgically implanted to continuously supply a controlled dose baclofen to the fluid around the spinal cord. Tizanidine (Zanaflex) works quickly to relieve the spasm and relax muscles.
Less commonly used drugs include diazepam (Valium), which may be used for spasms that interrupt sleep, and dantrolene (Dantrium), which is only used where other drugs are ineffective because of its potentially serious side effects, such as liver damage. Botox injections have been shown to be effective in relieving spasticity in individual muscles for up to three months. Clonidine is normally prescribed for hypertension and, although still considered an experimental drug, does seem to relieve spasticity.
Sativex is a cannabis based medicine used to help manageMS-related spasticity. It is only prescribable when people have been unable to find relief with other treatments or have found side effects intolerable and too difficult to cope with. Sativex is an oral-mucosal spray into the mouth, under the tongue or inside of the cheeks. The number of sprays or timings of these sprays varies, dependent on severity of symptoms and will be confirmed by the prescribing doctor. The maximum number of sprays a day is 12 and a gap of at least 15 minutes should be left between sprays.
The most common side effects are dizziness, fatigue, drowsiness and nausea.
- Self help
You may like to try relaxation techniques such as yoga, meditation or deep breathing exercises, as these may help you to relax and get to sleep at night. Massage can also relax your muscles and help to prevent pressure sores, but should not be used if pressure sores or reddened skin areas are already present. Complementary therapies such as acupuncture and taking mineral supplements such as calcium and magnesium may help to allieviate this symptom.
Surgical measures are only considered for rare cases that defy all other treatments.
If spasticity is causing you stress and affecting your everyday life, feel free to talk to one of our advisors. You can call us on 01206 226500 or email us on firstname.lastname@example.org
Why does MS cause speech problems?
Although many of us take the gift of speech for granted, it is actually an extremely complex process that requires fine control and co-ordination. In MS, difficulties can result when lesions occur in the area of the brain that facilitate speech. These difficulties can vary from being almost imperceptible to very severe. In addition, fatigue can affect the voice, making it very weak, especially towards the end of the day when you are tired or during periods of relapse. On occasion, low blood sugar levels can have the same effect.
By far the most common problem is slurred speech. This can cause enormous embarrassment, particularly if it is combined with impaired mobility or balance problems as it can seem as if the person affected is drunk. This can lead to a lack of self esteem, which may in turn cause more hesitation in speech and make the problem worse (see the next section on treatments). Other speech problems include weakness in the voice, sounding as if the person is speaking through their nose, and abnormally long pauses between words or syllables (called scanned speech). In some cases lesions in the brain cause a lack of understanding of what is being said and an inability to recall the vocabulary and grammar with which to construct a reply; this is known as dysphasia. Where understanding is still intact, yet the person has difficulty recalling words and constructing sentences, this is known as dysarthia.
Failing to speak clearly or make yourself understood can have a huge impact on your self confidence. However, a speech and language therapist is almost certain to be able to offer you help. They will devise strategies to help you cope with your speech problems by achieving more control over the way in which you form words and sentences. They will teach you the importance of good posture, clear articulation, managing the speed at which you talk, making the most of intonation and emphasis, avoiding over exertion, and avoiding speech when there is a lot of background noise. They will also show you how to strengthen the muscles you use when you talk.
Why does MS cause swallowing difficulties?
Swallowing is such an automatic response that we give it little thought unless it starts to give us a problem. The medical term for swallowing difficulties in dysphagia. Around 30% to 50% of people with MS have some degree of difficulty in swallowing. This is due to myelin damage in the part of the brain that controls the swallowing mechanism or in the nerves connected to it.
When we swallow two things happen:
1. The tongue is raised to block the opening to the nasal passage. It is then drawn back and the epiglottis moves to a horizontal position to close the airway. The voice box moves up and out to complete this airway closure. This prevents food from entering the windpipe. If the manoeuvre is not completed successfully a choking reflex clears the passage – we usually describe this as food or drink ‘going down the wrong way’.
2. Throat and oesophagus muscles then contract and relax to create waves that push the food into the stomach. When this wave reaches the stomach the muscles sealing the stomach entrance relax and after the food has entered the sphincter (a muscle) closes in order to prevent regurgitation.
The swallowing problems caused by MS often manifest themselves in swallowing when the person is not ready to do so or in choking or spluttering over food. Sometimes food is regurgitated involuntarily.
Early detection and appropriate treatment can successfully reduce the problems associated with swallowing difficulties. It is important that carers, families and friends also recognise this as a potential problem and understand that it is not limited to people with more advanced MS.
A radiologist, speech therapist and dietician may all be involved in addressing your swallowing problems. You may be referred for a video-fluroscopy, which takes a moving X-ray and can verify the exact nature and location of your swallowing problem. A speech therapist will help you deal with problems related to eating and drinking and a dietician can advise you on the types of food that you are likely to find easy to swallow.
You can also help by tucking in your chin when you swallow. Even a centimetre or so will help close the airways. Avoid rushing your meals and take time to chew well. Alternate liquid with solid food to moisten it and avoid speaking whilst you are eating. Remain upright for at least 30 minutes after your meal. You might also like to introduce softer foods into your diet or liquidise some of your food. The dietician will give you advice on thickening drinks by adding a corn-starch product.
In severe cases of swallowing problems that could put the individual at risk, nutrition can be provided through a procedure called a percutaneous endoscopic gastrostomy (PEG). This involves a tube being inserted through the abdomen directly into the stomach.
It is recommended that the Heimlich manoeuvre (a first aid treatment for choking) should be learned by carers and people with MS
- stand behind the person who is choking
- place your arms around their waist and bend them well forward
- clench your fist and place it right above the person's navel (belly button)
- place your other hand on top, then thrust both hands backwards into the stomach with a hard, upward movement
- repeat this until the object stuck in the throat is expelled through their mouth.
If you need to carry out this manoeuvre on yourself, place a clenched hand above your navel (belly button) and your other hand on top. Then thrust your fist hard into your stomach. Repeat this until the object stuck in the throat is expelled through the mouth.
Why does MS cause tremor?
The exact cause of tremor is unknown but it is thought to be due to lesions in the cerebellum, the area of the brain responsible for balance, co-ordination and ‘fluidity’ of movement. Tremor can also result from demyelination of the thalamus and the basal ganglia in the brain. Stress and fatigue are known to worsen tremor.
As many as 75% of people with MS develop a tremor but often not for many years after the original symptoms of MS appear. The tremor may come on gradually or develop quite swiftly. This involuntary, rhythmical, alternating movement can affect muscles in any part of the body. Some people experience a tremor during relapses, which lessens during periods of remission, while those with secondary progressive MS may develop a tremor that becomes more severe over time.
You may hear the term ‘intention tremor’, which is characterised by a slow broad shaking that occurs at the end of an intended movement, most noticeably in the hands. Sometimes this is referred to as Kinetic, Action and Cerebellar tremor.
When we move nerve transmissions are sent along motor nerve pathways and our muscles are instructed to perform an action, such as pick up a cup. This is a two-way process, in that the brain receives feedback about the movement from sensors in the joints and muscles and this feedback is used to guide and fine tune our movement. When an intention tremor is present this feedback happens more slowly, perhaps making the person overshoot their target. It is more obvious when performing delicate movements than broad sweeping ones.
Some people experience a tremor in their jaw, lip or tongue, which may affect their ability to speak efficiently. A postural tremor is one that occurs when the limbs are outstretched.
For less exaggerated tremors, minor adjustments to your posture, such as holding your arm close to your body, may be able to make the condition tolerable. You may also like to stabilise your head against a headrest or hold the wrist of your active hand with your resting hand. Fatigue and heat will almost certainly make your tremor worse, so plan your activities accordingly. Adding a weight to a limb, especially at the ankle or wrist, helps provide more control. However, take the advice of your neurologist or therapist as some studies show that tremor can be increased after the weights have been removed. Using easy-grip handles and non-skid surfaces is recommended and placing weights on household items can be useful, for example an additional weight on a pen, cutlery, hair brushes or kitchen utensils.
Clonazepam are is sometimes prescribed for their beneficial relaxing effects but the dose must be effective without causing excess sedation. This drug can create dependency.
Propranolol (Inderal) is a beta blocker normally prescribed for high blood pressure or angina. It can block nerve flow along certain nerves and is only given for physiologic tremors. The dosage starts low and is gradually increased to an effective level.
Amantadine (Symmetrel) is prescribed for its antiviral properties and helps people with MS alleviate fatigue. For some, this drug can also reduce tremors.
Baclofen (Lioresal) is often prescribed to treat spasticity in people with MS. It helps slow tremor but can cause muscle weakness.
Unlike many MS symptoms, tremor does not usually respond well to steroid treatment.
A physiotherapist will give you exercises for the shoulders, body, pelvis and hips that should increase your stability. They may introduce a technique called ‘patterning’ that uses repeated movements to increase muscle co-ordination. The physiotherapist will add increasing amounts of resistance to these movements in order to strengthen and make them automatic and, in turn, reduce your tremor.
Braces to the arms, hands, legs, feet or neck may help you to perform tasks such as writing or eating more easily, and regain your posture and mobility. Thalamotomy and thalamic stimulation
Thalamotomy is a surgical process that cuts or freezes the thalamus (the part of the brain that helps to control movement) in order to destroy the section that produces the tremor. It is only considered in cases where the tremor is very severe and ongoing and other treatment options have been exhausted.
Thalamic stimulation uses surgically implanted electrodes to stimulate the thalamus. Although safer than thalamotomy, this procedure is extremely expensive and still carries risk. As such, it is only suitable for consideration by people who are severely affected by tremor. - Cannabis
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Why does MS cause visual disturbances?
Visual disturbance can be one of the most common symptoms associated with MS. There are three main types – optic neuritis (the most common type), nystagmus and diplopia (double vision). Some people also experience temporary blurring of the vision, temporary loss of vision, pain with eye movements or blind spots. All are caused by damage to the myelin sheath surrounding nerves in the eye and/or central nervous system.
See our section on this topic, above.
In this condition both eyes move together involuntarily, usually in a horizontal plane but occasionally they move vertically or in a rotary manner. The person concerned is often unaware of their eye movements but continual movement can make them feel dizzy or nauseous or lose their balance.
Diplopia is caused when the pair of muscles that control a particular eye movement become weak and uncoordinated. Vision is disturbed producing double images and, in some cases, loss of balance due to spatial disorientation. Onset is usually sudden, which can be frightening for the person concerned. This is often an early symptom of MS but fortunately, usually resolves itself – see the next section on treatments.
Please see section on optic neuritis above for details of treatments.
Although fairly common, this condition can be difficult to treat. Drug therapy and a relaxant injection (Botox) given into the muscles of the eye has been shown to be effective. However, results only last three to four months and injection into the ocular muscles requires that the patient is under general anaesthesia. A study into the drugs gabapentin versus memantine for acquired nystagmus published in 2011 showed both drugs reduced median eye speed, gabapentin by 32.8% and memantine by 27.8%, and improved visual acuity. Each patient improved with one or both drugs. Side-effects included unsteadiness with gabapentin and lethargy with memantine. Both drugs should be considered as treatment for acquired forms of nystagmus.
Diplopia is usually temporary and can last a matter of weeks or months. It will be increased by fatigue or activities such as sitting in front of a computer screen for long periods. Some people find wearing a patch over the affected eye helps them carry on with their everyday tasks – A referral to an orthoptist would be helpful. Orthoptists can provide temporary stick on prisms which can be changed as the diplopia worsens or improves.
Some people have found complementary therapies such as acupuncture to be helpful for vision problems.
Any vision problems should be investigated by your GP or MS Nurse.
RNIB – Royal National Institute of the Blind
Helpline: 0303 123 9999 - Monday to Friday 9.00am - 5.00pm
The Nystagmus Network – www.nystagmusnet.org
A website packed with information about nystagmus; including personal experiences.