MS Matters, UK Multiple Sclerosis Society

Sight troubles in MS are very common but they often clear up, sometimes without any medication. Visual impairment is rarely serious or total in MS but is very commonly mild or subtle. There is a lot that people with MS can do to try to get help coping with visual impairment - and to help themselves.

Vision problems you have may be quite unrelated to MS. If you wore glasses before diagnosis, eye specialists recommend you continue to visit your optician regularly.

Three common vision problems for people with MS are diplopia (double vision) and nystagmus (jerky eye movements) and optic neuritis (inflammation of the optic nerve), which is a common first symptom of MS.

? Optic neuritis Symptoms of optic neuritis differ widely but typically it develops as pain and blurred vision over several days. The pain is usually a dull ache in and behind the eye, aggravated by eye movement and tenderness when the eye is touched, but the pain of optic neuritis can be excruciating for some people. The blurred vision is often described as a band across the middle of the eye. The middle of someone's face might look blurred and the outline clear. (Some people find this can be made worse by heat, exercise, being in bright surroundings or following prolonged fixation.) People also describe colours breaking up, dull or washed out in the affected eye.

In nine out of ten people, normal vision will return within six to eight weeks of an attack - and most of the remainder will have some recovery, even if their sight does not quite get back to the level they once had. (The optic nerve consists of about a million fibres that transmit impulses from the eye to the brain, so even if some fibres are lost during an attack as a result of demyelination, you may not notice any permanent damage to your sight.) Since only one eye is usually affected, there can be interference between the picture seen by the 'normal' and the imperfect eye, and this can be difficult.

There is some debate over whether using steroids to dampen down inflammation in severe optic neuritis helps improve the outcome of the attack (see MS Matters 'Questions and Answers' September-October 1999). The decision to take steroids should be at least partly dictated by the severity of the attack and will be made in conjunction with your doctor.

? Diplopia In MS, diplopia (double vision) arises when demyelination results in a weakness of the eye muscles. When pairs of muscles fail to coordinate, the eye cannot focus. Fatigue, increased temperature and stress can provoke this. The symptom is generally temporary and resolves spontaneously, although a brief course of steroids may sometimes help. Occasionally diplopia persists and then people need advice to learn how to cope.

One young man with diplopia said how 'seeing two of everything all the time' initially left him feeling terrified and sick. He felt he could not co-ordinate things, which in turn affected his confidence. However, it is known that over time the brain can 'learn' to compensate and he has successfully taught himself to live with it. Wearing a patch can help although try to limit this to reading or watching television or the patch can prevent compensation occurring. An optometrist might prescribe glasses with prismatic lenses that can bring the images together.

? Nystagmus Nystagmus is the uncontrolled, rapid movement (horizontal or vertical) of the eye. It can be mild - apparent only with an extreme sideways gaze - or more severe so that vision is noticeable impaired. One woman with an extreme form describes it as, 'everything appears to move in front…lots of things begin to appear double; it's very frightening and very unpredictable'. A related condition called opsoclonus causes 'jumping' vision. Clonazepam (an anti-spasm drug), or special lenses with prisms, can sometimes help. Unlike most symptoms of MS that tend go into remission, in 70% of cases nystagmus remains permanent.

The will to succeed Eye specialists sometimes remark that helping people with MS who have vision problems provides a unique and challenging task. People with MS are generally highly motivated to overcome their sight problems. Equally high, however, can be the sense of frustration and disappointment if sight problems persist and/or other disabilities make it hard to solve visual difficulties.

Indeed, as MS is not a one-symptom condition, often people can be so overwhelmed by other issues or disabilities which they feel need more immediate attention that they can push anything but a really major vision problem to one side and not really see themselves as visually impaired.

In some cases, all this can pose problems and place strains on carers and families. For example, if vision is failing and problems with memory or concentration are beginning to arise, a person might start to fill in the gaps and even invent interpretations, quite subconsciously, in ways that have no bearing on reality (a process known as confabulation). A care worker gave an illustration where a person might say, 'I know it was there a minute ago.' Whatever 'it' was hasn't actually been moved at all - but because it is no longer visible or because memory is playing tricks, the person with vision problems really begins to believe somebody has moved it.

Living with vision problems If you do have a visual impairment, an important way to gain access to services is to become registered as partially sighted or as blind. (If you are told by your eye specialist that you can be registered as blind, this does not mean you will necessarily lose all your sight: it means your eyesight has fallen below certain levels. Nine out of ten people registered as blind have some useful sight.) Being registered means your name will be held on a confidential list by the local Social Services department and registration may entitle you to a big range of services, depending on where you live, like an assessment of your needs for help in the home, special equipment and adaptations etc. There are several routes to registration but you can talk to your regular doctor first. But you don't have to register if you don't want to.

You can also get advice by telephoning your council's Social Services department. Ask to speak to the Visual Impairment Team, Rehabilitation Worker or the Duty Social Worker. Information is the key to intelligent planning for living with visual impairment. Organisations like the Royal National Institute for the Blind (RNIB) can give information on aids and treatments - and also the nitty gritty details that help with day-to-day living.

'Low vision aids' are devices which help you to see better and can help many (though not all) people who have some residual sight. Choosing the right aid is important. You can try to get professional help although unfortunately low vision clinics in hospitals and specialist optometrists are not found everywhere.

Prescription lenses can help correct vision, and can also be tinted to filter out glare, UV and different colours of light. To enlarge print, there are magnifiers (of perspex or standard glass - some small enough to slip inside a book, other hand-held or on stands) or even small automatic focussing telescopes. Specially adapted computers can magnify text and maximise contrast. Reading problems can sometimes be solved with stronger glasses - or by bringing your book closer! Stronger directed lighting helps.

Technology has helped enormously in allowing people with visual impairment to continue to manage their everyday affairs. ? Banks, utility companies, British Telecom etc. allow telephone transactions. Telephones themselves can come with large obvious buttons for easier use. ? Ask your bank for a template to help you fill in cheques and ask what else they can do to help. Most banks and building societies will send large print statements. If your bank is unhelpful, change your bank. ? As for publications in large print and on tape. From the Inland Revenue and Benefits Agency to Tesco, Sainsbury's and Boots, many leaflets, promotions etc. are produced in large print and on tape. ? Ask people who write to you to use large, thick-nibbed pens. Using a similar pen with a writing frame as a guide might make your own letters clearer, too.

Judging distances can become a problem and this might affect your ability to move around, recognise and find objects. Life in the kitchen in particular can become a new challenge! Catalogues and booklets give details of products and services for people with sight problems including: ? specially designed tools for DIY and gardening enthusiasts ?gadgets for marking or colour-contrasting, so that you do not have to hunt for light switches or knobs on appliances and so on ?items to ensure medications are taken safely ?aids for the kitchen including 'talking' microwaves and scales, dark chopping boards for light foods and vice versa.

Talking books An enormous feeling of loss can be felt with visual impairment. One woman with MS felt her greatest sadness when she was no longer able to lose herself in a book. However, there are excellent subscription services available that will send books, national and local newspapers, journals and magazines on tape to your home. (Note that you can also get MS Matters on tape - see the panel for details.)

Driving The DVLA has a booklet with advice on driving regulations and certain visual problems. They also have a special medical helpline linked to their Customer Enquiries (see panel).

Finally, do remember that most vision problems in MS will resolve of their own accord without the need for medication. Permanent visual impairment is rare. There is a big selection of help available to help you cope with a sight problem. Becoming registered as partially sighted or as blind can trigger services locally.

Terms and definitions ?Optometrist (previously called an optician and sometimes known as an ophthalmic optician) works in a high street practice or hospital. Tests sight, prescribes glasses, and can refer you to a GP or ophthalmologist. ?Optician (previously called a dispensing optician) supplies and fits glasses. ?Ophthalmologist (a specialist eye doctor) most work in hospital eye clinics and diagnose eye conditions, treat them and perform surgery.

Useful contacts and information RNIB (Royal National Institute for the Blind) Helpline tel: 0345 669 999

RNIB publish a wide range of information including the leaflet All about registering as a blind or partially sighted person and the book You and your sight: Living with a sight problem. Ask for a copy of Getting on: Services for people with a visual impairment (published by Action for Blind People), and about RNIB catalogues and talking books.

Action for Blind People Information and Advice Centre Tel: 020 7732 8771

Partially Sighted Society offers one-hour private low vision assessments by qualified orthoptists for £25 Tel: 01302 323 132

Nystagmus Network 108C Warner Road London SE5 9HQ Helpline: 01392 272 5733

Talking Newspaper Association Tel: 020 7407 9417

Driver and Vehicle Licensing Authority (DVLA) Customer enquiries: 01792 772 151

For MS Matters on cassette tape, telephone Sarah Minett at MS Society HQ on 020 7610 7182

Visual Impairment in MS
MS Matters, UK Multiple Sclerosis Society
Visual Impairment in MS  (218 k)