Glossary

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Access to Work

An Access to Work grant helps pay for practical support if you have a disability, so you can start working, stay in work or start your own business.

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Acute disseminated encephalomyelitis

ADEM (acute disseminated encephalomyelitis) is a brief but intense attack of inflammation in the brain and spinal cord that damages the protective myelin layer around the nerve fibres. ADEM often follows an infection and, while rare, is more common in children than in adults. As both the symptoms and the test results for ADEM can be similar to those of MS, it may be difficult for doctors to distinguish between the two. For more information about ADEM, visit the Great Ormond Street Hospital website www.gosh.nhs.uk or the National MS Society website www.nationalmssociety.org and search for ‘ADEM’.

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ADEM

Acute disseminated encephalomyelitis (ADEM) is a brief but intense attack of inflammation in the brain and spinal cord that damages the protective myelin layer around the nerve fibres. ADEM often follows an infection and, while rare, is more common in children than in adults. As both the symptoms and the test results for ADEM can be similar to those of MS, it may be difficult for doctors to distinguish between the two. For more information about ADEM, visit the Great Ormond Street Hospital website www.gosh.nhs.uk or the National MS Society website www.nationalmssociety.org and search for ‘ADEM’.

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Advance care plan

An advance care plan is used to record your future care and treatment wishes, and will normally be made in partnership with a health care team towards the end of life.

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Advance decision

An 'advance decision to refuse treatment' (previously known as an 'advance directive' or a 'living will') is a decision you can make now to refuse a specific type of treatment at some time in the future. It can be used if you lose the capacity or ability to make the decision yourself at the time of the proposed medical treatment.

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Advance statement

An advance statement allows you to set down your preferences, wishes, beliefs and values regarding your future care. It can act as a guide to anyone in the future who might have to make decisions on your behalf if you lose the capacity to make or communicate these decisions yourself.

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Aetiology

Aetiology is the study of the cause of a particular medical condition. Researchers studying the aetiology of multiple sclerosis (MS) will be studying the causes of MS.

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Aimspro

Aimspro is a goat serum that has been tested for use in MS. This treatment uses serum (the fluid portion of blood) from goats that have been inoculated with a variety of vaccines, to generate neutralising antibodies.

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Alemtuzumab

Alemtuzumab is a licensed treatment for people with active relapsing remitting MS. Its brand name is Lemtrada and it has also been known as Campath.

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Alternative therapies

Complementary and alternative medicine' is the name given to a broad group of health-related therapies and disciplines which are not considered to be part of mainstream medical care. They may be used alongside conventional healthcare and accepted as 'complementing' it, or they may be provided as an 'alternative' to conventional healthcare.

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Amino acids

Amino acids are often called the 'building blocks' of proteins. Each protein is made up of hundreds or thousands of amino acids joined together in long chains.

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Annuity

When you start drawing an income from your pension fund you can normally take part of it, typically up to 25%, as a tax free lump sum. You must then convert the remainder of the fund into an annuity. An annuity is provided by an insurance company and pays you a guaranteed regular income for the rest of your life. Your choice of which insurance company you choose to provide your annuity is crucial, because once the annuity has started you cannot change your mind. People with MS may be able to get a special type of annuity, offering more income than a conventional one.

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Anti-inflammatory

Inflammation is the body's response to injury, irritation, or infection. Active lesions in the brain of people with MS are sites of inflammation. Anti-inflammatory treatments aim to reduce or prevent inflammation.

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Antibodies

Antibodies are made in the body by immune cells. Normally they attach to foreign objects in the body, like viruses and bacteria, and mark them to be destroyed by the immune system.

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Anticholinergics

Anticholinergics are drugs that can be prescribed for treating an overactive bladder. They aim to reduce the tendency for the bladder to contract, which can help to relieve both frequency (the need to urinate frequently) and urgency (an inability to hold on).

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Apitherapy

Apitherapy, also known as bee venom therapy, is the medical use of bee venom to treat MS. There is currently no clinical evidence to support this therapy.

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APPG

The All-Party Parliamentary Group (APPG) for MS is a group of parliamentary supporters who are committed to tackling MS issues, and ensuring that these are raised in parliament.

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Ataxia

Ataxia is a medical term often used in relation to MS-related tremor. It covers a group of symptoms that includes problems with balance and coordination along with tremor.

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Atrophy

Atrophy refers to shrinkage of tissue. In MS, damage to the brain causes it to shrink faster than would normally occur (also known as brain atrophy). This can be seen on an MRI scan.

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Attendance Allowance

Attendance Allowance is a benefit paid to people aged 65 or over who have an illness or disability and, as a result, need help with personal care or supervision, or both.

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Aubagio

Aubagio is the brand name for teriflunomide, a licensed treatment for people with relapsing remitting MS.

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Autoimmunity

Autoimmune conditions occur where the body's natural defence mechanisms (the immune system) attack the body's own tissue. MS is widely believed to be an autoimmune condition. In MS, the tissue that comes under attack is myelin, which is the coating surrounding nerve fibres in the brain and spinal cord.

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Axon

Axons are the long extensions of nerve cells that transmit nerve signals. They communicate with other nerve cells or muscles.

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Bee venom therapy

Bee venom therapy, also known as apitherapy, is the medical use of bees or bee products to treat MS and other medical conditions. Clinical trials looking at the use of bee venom therapy to treat MS did not find any benefits.

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Benign MS

Benign MS is a label that can only be applied when looking back at the course of someone's MS over a period of at least 10 to 15 years. It applies if they have little or no disability and/or other symptoms, or their MS hasn't worsened.

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Beta interferon

Another name for interferon beta.

Synonyms: Beta-interferon

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BG-12

BG-12 is a previously used name for dimethyl fumarate (brand name Tecfidera). It is a licensed tablet taken 2 or 3 times a day as a first-line treatment for people with relapsing remitting MS.

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Biomarkers

Biomarkers are biological measures that can be detected in the body (usually the blood or urine). They can be used to diagnose, chart, and/or predict the course of a condition. Current research is focusing on discovering new biomarkers in MS that could be detected by a simple blood or urine test.

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Blind clinical trials

Blinding - either single or double - is a method used to limit bias in clinical trials. In a single blind trial the researchers know who is receiving the real treatment and who is receiving the dummy (or placebo), but the participants don't. In double blind trials, neither the researchers nor the participants know who is receiving which treatment. If participants know which treatment they are getting it might influence how they feel or report their symptoms. If researchers know which treatment a participant is receiving, it might influence how they record or view that participant's results.

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Blood brain barrier

The blood-brain-barrier is a protective layer that prevents some substances from getting out of the bloodstream and into the central nervous system (CNS). It is formed by the cells lining the blood vessels in the brain.

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Blue Badge Scheme

The Blue Badge Scheme is a national arrangement that offers special parking provision for some people with disabilities, and enables parking for either drivers or passengers closer to the required destination.

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Bone marrow

Bone marrow is the spongy tissue found in the middle of most bones. New red blood cells and some of the cells in the immune system are made in the bone marrow.

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Botox

Botox (botulinum toxin) is commonly known for its use in cosmetic procedures. However, it is also licensed for the treatment of people with MS who have an overactive bladder. It works by temporarily paralysing muscles.

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Cambridge Centre for Myelin Repair

This MS Society-funded programme has established a research centre of excellence at Cambridge University for developing new therapies for promoting myelin repair and preventing nerve fibre loss in MS patients. The centre will unite existing expertise in stem cells, brain repair and MS in a focused programme of work.

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Campath-1H

Campath 1-H is a previously used name for alemtuzumab (brand name Lemtrada). It is a licensed first-line annual infusion treatment for people with active relapsing remitting MS.

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CAMs

Complementary and alternative therapies, or CAMS, are broadly defined as health-related therapies and disciplines which are not considered to be part of mainstream medical care.

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Cannabinoids

Cannabinoids are the active parts of the cannabis plant, found in the leaves, stems and flowers. Cannabis is deemed to be an illegal substance. However, a cannabis-based oral spray called Sativex is licensed for the treatment of spasticity in people with MS.

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Cannabis

Cannabis is an illegal drug in the UK. However, a cannabis-based oral spray called Sativex is licensed for the treatment of spasticity in people with MS. At present, it is only available in Wales on the NHS.

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Care and repair agencies

Care and repair agencies, also known as home improvement agencies, assist older and disabled people to improve, repair, maintain or adapt their home. There are local care and repair agencies across all four nations of the UK.

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Care and Support Alliance

The Care and Support Alliance is a consortium of over 70 organisations that represent and support older and disabled people, including disabled children, those with long-term conditions, and their families. It campaigns to keep adult care funding and reform on the political agenda.

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Care assessment

If you apply to your local authority for support, they will do a care assessment (sometimes called community care assessment) to find out what your care needs are and how they can be met - for example, health care, equipment, help in your home or residential care.

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CAT scan

A CAT (computerised tomography) scan is a type of X-ray that produces a three-dimensional picture of the body. It is about 100 times more sensitive than a standard X-ray. It can be taken with or without a contrast dye. The dye, given as a drink or by injection, enhances the quality of the X-ray pictures.

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Catheter

A catheter is a hollow tube used to drain bodily fluids. For some people with MS, using a catheter can help if they are not emptying their bladder fully.

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CBT

CBT (cognitive behavioural therapy) is a talking therapy that can help you manage your problems by changing the way you think and behave. It is based on the concept that your thoughts, feelings, physical sensations and actions are interconnected, and that negative thoughts and feelings can trap you in a vicious cycle. CBT can help you to manage some of the symptoms of MS. It can't make them go away, but it can help you to cope better with them.

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CCSVI

Chronic cerebrospinal venous insufficiency (CCSVI) is a syndrome characterised by poor removal of oxygen-depleted blood from the central nervous system. This is thought to be caused by a constriction of blood vessels in the brain and neck which affects brain blood flow and drainage. Research studies and clinical trials have failed to show either a definitive link between this syndrome and MS, or the benefit of procedures designed to treat CCSVI. The MS Society does not recommend seeking this unproven treatment outside of a properly regulated clinical trial.

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Central Nervous System

The central nervous system (CNS) is made up of the brain and spinal cord. It is responsible for controlling all the functions in the body.

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Cerebrospinal fluid

Cerebrospinal fluid is a clear liquid that surrounds the brain and spinal cord.

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Chromosome

The genetic material (DNA) inside cells is packed into tight coils called chromosomes. There are 23 pairs of chromosomes in every cell in the human body. These contain all the genetic information needed to make a human being.

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Chronic cerebrospinal venous insufficiency (CCSVI)

Chronic cerebrospinal venous insufficiency (CCSVI) is a syndrome characterised by poor removal of oxygen-depleted blood from the central nervous system. This is thought to be caused by a constriction of blood vessels in the brain and neck which affects brain blood flow and drainage. Numerous studies and clinical trials have failed to show either a definitive link between this syndrome and MS, or the benefit of procedures designed to treat CCSVI. The MS Society does not recommend seeking this unproven treatment outside of a properly regulated clinical trial.

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CIS

CIS (clinically isolated syndrome) describes symptoms which, like MS, might be due to damaged myelin around nerve fibres. Unlike MS, there have been no previous attacks in CIS. Some people with CIS go on to have further attacks and, if test results support it, are diagnosed with MS. Some people never develop MS and the CIS will remain an isolated incident.

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Citizens Advice Bureau

Citizens Advice Bureaux are a network of centres across the UK, providing advice and information on a wide range of issues including benefits, housing rights, consumer issues, money and debt.

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Cladribine

Cladribine is a tablet currently being tested for people with relapsing remitting MS. Cladribine has traditionally been used as a cancer drug, because it kills immune cells (which are involved in the damage caused in MS).

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Clinical commissioning groups

Clinical commissioning groups (CCGs) are groups of General Practices that work together to plan and design local health services. They are responsible for commissioning health care services across England.

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Clinical trial

Clinical trials are research studies involving volunteers, which aim to evaluate the safety and effectiveness of unproven treatments. No matter how promising a new treatment may appear, it must go through a proper clinical trial before its benefits and risks can be certain.

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Clinically Isolated Syndrome

CIS (clinically isolated syndrome) describes symptoms which, like MS, might be due to damaged myelin around nerve fibres. Unlike MS, there have been no previous attacks in CIS. Some people with CIS go on to have further attacks and, if test results support it, are diagnosed with MS. Some people never develop MS and the CIS will remain an isolated incident.

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Clonus

Clonus describes a spasm where the muscles jerk repeatedly, for example if your foot taps repeatedly on the floor. This type of spasm can be a symptom of MS.

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CNS

The central nervous system (CNS) is made up of the brain and spinal cord. It is responsible for controlling all the functions in the body.

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Cognition

Cognition refers to attention, language, perception, memory and thinking. Some people with MS have problems with these processes, known as 'cognitive difficulties'.

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Cognitive Behavioural Therapy

CBT (cognitive behavioural therapy) is a talking therapy that can help you manage your problems by changing the way you think and behave. It is based on the concept that your thoughts, feelings, physical sensations and actions are interconnected, and that negative thoughts and feelings can trap you in a vicious cycle. CBT can help you to manage some of the symptoms of MS. It can't make them go away, but it can help you to cope better with them.

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Cold Weather Payments

If you are on a low income, a Cold Weather Payment may be available to help you for each week of very cold weather in your area.

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Commissioning

Commissioning is the buying or procuring of services. It’s a term often used in health care, where it’s the job of an individual or an organisation to arrange the provision of health care services for individuals.

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Community care assessment

A health and social care assessment with the social services department of your local council looks at your individual needs and discusses them with you, so the right support can be provided. Services you may need can include healthcare, equipment, help in your home or residential care.

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Community care grant

Community care grants are available if you live in Northern Ireland, are on a low income and you need financial help to live independently in the community. If you live in England, Scotland or Wales, other sources of funding may be available.

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Complementary therapies

Complementary and alternative medicine therapies (CAMS) are the name given to a broad group of health-related therapies and disciplines which are not considered to be part of mainstream medical care. They may be used alongside conventional healthcare and accepted as 'complementing' it, or they may be provided as an 'alternative' to conventional healthcare.

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Constipation

Constipation describes bowel movements which are irregular, infrequent or difficult. It is a common symptom in MS.

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Continuing healthcare

Continuing healthcare (sometimes known as fully funded NHS care) is care outside of hospital that is arranged and funded by the NHS. It is only available to people who have a complex medical condition and need a high level of care, which is primarily health care (rather than social care).

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Contribution-based Jobseeker's Allowance

Jobseeker's Allowance is a benefit paid if you are not in full-time work but are actively looking for work. Contribution-based Jobseeker's Allowance is paid for six months if you have worked and paid enough National Insurance contributions in the relevant years.

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Controlled experiment

In a controlled experiment, two virtually identical experiments are conducted, but the factor being tested is varied in only one of them. This allows researchers to isolate the causes of any change which occurs during the experiment.

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Controlled trials

These are designed to compare a new treatment with a standard or usual therapy. One group are given the new treatment, while the others are given either the standard treatment or no treatment at all.

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Copaxone

Copaxone is the brand name for glatiramer acetate, a licensed drug for relapsing remitting MS.

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Corticosteroids

Corticosteroids are types of drugs that are sometimes used to treat relapses in MS as they can help to reduce inflammation.

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Council tax reduction

If you have a low income or you receive certain benefits, you can apply for a reduction of up to 100 per cent of your council tax bill. This is known as council tax reduction. It replaces council tax benefit.

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CT scan

CT (computed tomography) scans used to be used to help diagnose MS before the development of MRI. CT scanning is rarely used now as it is less sensitive than MRI scanning and, unlike MRI, involves doses of radiation.

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Cyclophosphamide

Cyclophosphamide is a drug that supresses (or dampens down) the immune system. It is often given by injection to treat MS.

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Deep brain stimulation

Deep brain stimulation - or thalamic stimulation - is a type of surgery that is sometimes used to treat severe tremor if other treatment options haven't worked. It involves placing electrodes in a part of the brain called the thalamus. They deliver a small electric current which can help calm the tremor. The technique was originally developed to treat tremor in people with Parkinson's and is less successful at treating MS tremor. However, it can help some people.

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Demyelination

Nerve fibres in the brain and spinal cord are surrounded by a fatty substance, called myelin. This myelin protects the nerves, and helps messages travel along them quickly and smoothly. 'Demyelination' means loss or damage to that protective layer through disease or injury.

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Diagnostic criteria

To diagnose MS, a neurologist is looking for evidence of damage to the central nervous system that has occurred on different dates, and affected at least 2 different places in the central nervous system. This is the diagnostic criteria for MS, also known as the McDonald criteria. They will look for this evidence using MRI, lumbar puncture and evoked potentials, as well as taking a history of current and previous symptoms.

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Dietitian

Registered dietitians are experts in diet and nutrition. They give advice on all aspects of eating and diet. If MS is affecting what or how you eat, a dietitian can help you to ensure you're still meeting all your nutritional needs.

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Dimethyl fumarate

Dimethyl fumarate is a licensed treatment for people with relapsing remitting MS. Its brand name is Tecfidera and it has also been known as BG-12.

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Direct Payments

Direct payments are paid to you by the local authority to arrange your own care and support. You can use them to buy whatever support is identified in your support plan.

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Disability Discrimination Act

In Northern Ireland, the Disability Discrimination Act aims to protect disabled people and prevent disability discrimination. It provides legal rights for disabled people in the areas of employment, education, access to goods, services and facilities, and buying and renting land or property. In England, Wales and Scotland, the Disability Discrimination Act was replaced with the Equality Act in 2010.

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Disability employment advisor

Disability Employment Advisers are based at local Jobcentres, and can help people with disabilities help find work or gain new skills.

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Disability Living Allowance

Disability Living Allowance (DLA) was, until 2013, the benefit you could claim if you needed help getting around and/or looking after yourself. For working age people in England, Wales and Scotland it is being replaced by Personal Independence Payment (PIP).

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Disabled Facilities Grant

A Disabled Facilities Grant (DFG) can be used for a wide range of adaptations to the home, for example to improve access or make your property safer. In England, Wales and Northern Ireland you can apply for one from your local authority. For Scotland, similar help is available through the Scheme of Assistance.

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Disease modifying treatments

If you have relapses with your MS, disease modifying treatments (DMTs) might be a suitable treatment for you. They're not a cure for MS, but they can reduce the number of relapses you have.

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DLA

Disability Living Allowance (DLA) was, until 2013, the benefit you could claim if you needed help getting around and/or looking after yourself. For working age people in England, Wales and Scotland it is being replaced by Personal Independence Payment (PIP).

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DNA

DNA (Deoxyribose nucleic acid) is found inside every living cell. It is made up of lots of different sections, called genes. These genes contain instructions on how our bodies develop and function.

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Dose

The amount of drug given to someone.

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Double blind trials

In a double blind trial neither the participants nor the trial investigators know whether or not the participants are taking the drug being studied. This is so that the hopes or expectations of doctors and patients will not influence the results of the trial.

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Doxycycline

Doxycycline is an oral antibiotic currently being tested for use in relapsing remitting multiple sclerosis (MS). It is thought that doxycycline can dampen down the immune system.

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Drop foot

Drop foot (also known as foot drop or dropped foot), is the inability to lift the foot and toes when walking. This symptom is a feature of a number of neurological disorders, including MS, and can be caused by muscle or nerve problems. It is due to weakness of the muscles that pull the foot upwards (ankle dorsiflexors), and can be partial or complete. A variety of treatments exist, including Functional Electrical Stimulation (FES) or orthotics.

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Dysarthria

Dysarthria is difficulty speaking caused by problems controlling the muscles used in speech. It can be a symptom of MS.

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Dysphagia

Dysphagia is the medical term for swallowing difficulties. It can be a symptom of MS.

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Dysphasia

Dysphasia can make it hard to understand what is being said (receptive dysphasia), or difficult to recall words or find the right way to say something (expressive dysphasia). It can be a symptom of MS.

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Edinburgh Centre for Translational Research

Co-funded by the MS Society, the Edinburgh Centre for Translational Research promotes collaboration between scientists and clinicians from many disciplines of MS research. It aims to speed up the process of drug discovery and delivery of potential therapies into clinical trials.

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EDSS

The EDSS (Expanded Disability Status Scale) is used to measure disability in multiple sclerosis and to monitor changes in the level of disability over time. The scale ranges from 0 to 10 - the higher the number the higher the level of disability.

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EEG

An EEG (electroencephalogram), shows the electrical activity in the brain. It is measured by placing electrodes on the scalp. EEGs are very sensitive and can detect when nerve signals have been slowed down by damage to the brain. One form of EEG, the visual evoked potential (VEP) is used to diagnose MS.

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Electroencephalogram

An EEG (electroencephalogram), shows the electrical activity in the brain. It is measured by placing electrodes on the scalp. EEGs are very sensitive and can detect when nerve signals have been slowed down by damage to the brain. One form of EEG, the visual evoked potential (VEP) is used to diagnose MS.

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Embryonic stem cells

Most of the cells in our body have a specific function, like the cells in our skin or bones. These types of cells are called specialised cells. Embryonic stem cells are unique because they are able to make all of the specialised cells in the body, and can also make many copies of themselves. Researchers use embryonic stem cells to investigate how nerve cells are made, how they work, and to test new drugs that might have an effect on myelin damage or repair.

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Employment and Support Allowance

Employment and Support Allowance (ESA) is a benefit paid if your ability to work is limited by ill health or disability. It replaces Incapacity Benefit or incapacity-related Income Support.

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Enduring Powers of Attorney

In England, Wales and Northern Ireland, an Enduring Power of Attorney (EPA) is a legal document that allows someone you have chosen to make decisions on your behalf. They can cover property and financial affairs and/or health and welfare. In England and Wales, EPAs have been replaced by Lasting Powers of Attorney (LPAs). However, an EPA can still be used if it was made and signed before October 2007.

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Enzyme

Enzymes are protein molecules that speed up chemical reactions. An example of enzymes in the body are the ones in your gut that helps you digest or breakdown food.

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Epidemiology

Epidemiology is the study of when, where and how a disease or condition spreads through a population and how diseases can be controlled.

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Epstein Barr virus

Epstein Barr Virus (also known as EBV) is a common virus that can sometimes cause glandular fever. It is carried by around 95 per cent of the population in the UK, but most have no symptoms. Research has shown there may be a link between EBV and MS, but more research needs to be done to confirm if EBV has any role in causing or contributing to MS.

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Equality Act

The Equality Act (which has replaced the Disability Discrimination Act in England, Scotland and Wales) aims to protect disabled people and prevent disability discrimination. It provides legal rights for disabled people in the areas of employment, education, access to goods, services and facilities, and buying and renting land or property.

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ESA

Employment and Support Allowance (ESA) is a benefit paid if your ability to work is limited by ill health or disability. It replaces Incapacity Benefit or incapacity-related Income Support.

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Esperanza Neuropeptide

Esperanza Homeopathic NeuroPeptide is a product, the active ingredient of which is extracted from cobra venom. The manufacturers say that it can help symptoms relating to MS, and that the product allows messages to be conducted along nerves, despite the loss of protective myelin, which is a feature of MS. There is no evidence to show that this is the case.

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Estrogen (sex hormones)

It is well established that females are more susceptible to relapsing remitting MS than males. In addition, the frequency of relapses reduces by up to 70 per cent during pregnancy, particularly late stages of pregnancy. These observations have led researchers to investigate the role of the gender-specific hormones estriol (a pregnancy hormone) and testosterone (a male hormone) in reducing relapses in MS. Current studies are being done to investigate the effects of these hormones on relapses in MS.

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Evoked potential

An evoked potential is one of the tests used to diagnose MS. It measures how quickly messages travel between the brain, eyes, ears and skin. Small electrodes attached to the head monitor how brain waves respond to what the person has seen or heard. Messages are slower if myelin damage has occurred.

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Expanded Disability Status Scale

The Expanded Disability Status Scale (EDSS) is used by health professionals to measure disability in multiple sclerosis and to monitor changes in the level of disability over time. The scale ranges from 0 to 10 - the higher the number the higher the level of disability.

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Experimental autoimmune encephalomyelitis

Experimental autoimmune encephalomyelitis (EAE) is an animal model of MS, usually studied in mice. It is brought on by artificially triggering the immune system to attack myelin. EAE is not exactly the same as MS, but studies of the various forms of EAE are thought to provide some insight into the nature of MS and potential treatments.

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Expert patient courses

The Expert Patients Programme is an NHS initiative in England and Wales that provides opportunities for people to develop new skills to manage long-term conditions on a day-to-day basis.

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Family risk of MS

Heredity refers to the passing of genetic traits from parents to their children. Studies in siblings and twins suggest that MS is caused by a mixture of genetic and environmental factors. There have been several genes shown to be linked with MS, but researchers believe there could be between 50 and 100 genes associated with MS.

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Fampridine

Fampridine (brand name Fampyra) is a licensed treatment for people with MS to help improve walking speed and ability. Unfortunately, it is not available on the NHS.

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Fatigue

Fatigue is one of the most common, troubling symptoms experienced by people with MS. MS fatigue is more than just the ordinary tiredness you might experience after a hard day's work or strenuous exercise. Many people with MS describe their fatigue as an overwhelming tiredness with no obvious cause.

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FES

FES (functional electrical stimulation) is a device which stimulates the muscles and nerve fibres of the ankle and foot. It can help combat ‘drop foot’ – where the muscles cannot smoothly control the foot’s actions during walking.

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Fingolimod

Fingolimod is a licensed treatment for rapidly evolving severe MS. Its brand name is Gilenya. It is taken as an oral tablet.

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Functional Electrical Stimulation

Functional electrical stimulation (FES) is a device which stimulates the muscles and nerve fibres of the ankle and foot. It can help combat ‘drop foot’ – where the muscles cannot smoothly control the foot’s actions during walking.

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Functional magnetic resonance imaging

Functional magnetic resonance imaging (fMRI) is an imaging technique that measures blood flow to the brain. It is able to detect highly active brain regions because they require an increased supply of blood.

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Gene

Genes are found in every cell of the human body. They contain information on how and when to make a protein. Cells 'read' the genes when they need to make the protein. The proteins inside a cell determine what type of cell it is and what it can do.

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Gene susceptibility

With some conditions, for example cystic fibrosis, genetic factors make it certain that a person will eventually get a disease if they inherit certain genes. In other cases, genetic factors only make it more likely that a person will get a disease. This is true for MS. People who are genetically susceptible to MS also need to be exposed to one or more (as yet unknown) environmental factors before they develop the condition.

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Genetics

The study of genes and genetic susceptibility (the likelihood of developing a condition based on your genes).

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Gilenya

Gilenya is the brand name for fingolimod, a licensed treatment for relapsing remitting MS.

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Glatiramer acetate

Glatiramer acetate is a licensed treatment for relapsing remitting MS. Its brand name is Copaxone.

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Glucocorticoids

Glucocorticoids are a type of steroid hormone found naturally in the body. They control the immune system and have an anti-inflammatory effect. A synthetic version is used to treat relapses in MS.

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Grey matter

Grey matter refers to the areas in the brain and spinal cord where nerves do not have a myelin sheath. These areas appear dark when compared with white matter.

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Heredity

Heredity is the passing of genetic traits from parents to their children, such as hair or eye colour. Studies in siblings and twins suggest that MS is caused by a mixture of genetic and environmental factors. There are several genes linked to MS, but researchers have shown there are over 110 genes associated with MS.

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Herpes virus

There are a number of herpes viruses including the viruses that cause cold sores and genital herpes (HSV 1 and 2), and the human herpes virus 6 (HHV-6). Some researchers believe HHV-6 may be linked to MS.

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Hookworms

Hookworms are parasitic worms that infect the gut of other organisms and live off nutrients moving through the gut. Research has shown that hookworm infections can dampen down the immune system, suggesting that they may be effective in treating a number of autoimmune conditions including MS. A phase 2 clinical trial taking place in Nottingham is investigating the safety and effectiveness of hookworm infections in people with relapsing remitting MS.

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Hormones

A hormone is a chemical message produced by glands in the body that travels through the bloodstream to regulate different organs. Current studies are being done to investigate the effects of hormones on relapses in MS.

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Housing benefit

Housing Benefit is paid by local authorities to help people on a low income to pay their rent. You may be able to claim all of your rent or just part of it. You do not have to be unemployed or claiming other benefits to apply for it.

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Human endogenous retrovirus

Human endogenous retroviruses (HERVs) are viruses that at some time in the past integrated themselves into human DNA. There is some evidence linking specific HERVs to MS, but the connection is still unclear.

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Hyperbaric oxygen therapy

Hyperbaric oxygen therapy involves breathing pure oxygen in a pressurised room or tube. Hyperbaric oxygen increases the oxygen content in the blood and in different body tissues. It is an accepted therapy for some medical conditions, for example, burns and decompression sickness. Some people with MS say it helps relieve some of their symptoms, but scientific studies fail to prove these claims.

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Hypersomnia

Hypersomnia is excessive sleeping, which may be a symptom of depression.

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Immune cells

Cells that are responsible for detecting and fighting off infections. In people with MS, immune cells lose their ability to distinguish suspicious foreign cells from normal healthy cells. This causes the immune system to mistakenly attack the protective layer of myelin on nerve cells.

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Immune response

The immune response refers to the activity of the immune system immediately after an infection, and in the days and weeks following. If the infection strikes again, the immune system recognises it and can mount a quick response. This is what gives people immunity to certain infections.

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Immune system

The immune system is your body’s defence against infections. It is made up of organs, proteins, white blood cells, and antibodies. It's job is to destroy bacteria and viruses, neutralise toxins, repair damage to cells following injury, and destroy the body's own cells if they are no longer functioning properly (eg to prevent cancer).

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Immunisation

Immunisation, or vaccination, is the process by which the body is injected with a harmless form of a virus. This process allows the immune system of the body to produce natural antibodies to the virus and give people immunity to viruses. There have been previous concerns that vaccinations, in particular hepatitis B vaccination, may play a role in triggering the onset or relapse of MS, but there is little evidence to suggest this is the case. The general consensus within the medical field is that vaccinations in general and hepatitis B vaccination do not increase the risk of onset or relapses in MS. There is no reason to advise people with MS, their relatives and children, or the general population to avoid vaccinations.

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Immuno-suppression

Immunosuppression involves reducing the activity of the immune system. Drugs which suppress the immune system are sometimes used to treat autoimmune conditions like MS.

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Immunology

Immunology is the study of the immune system and how it works.

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Incapacity Benefit

Incapacity Benefit was, until 2008, the benefit claimed by people who were incapable of work through ill health or disability. It is being replaced with Employment and Support Allowance (ESA).

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Income Support

Income Support is extra money to help people on a low income. It's for people who don't have to sign on as unemployed. Whether you qualify or not, and how much you get, depends on your circumstances.

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Income-based Jobseeker's Allowance

Jobseeker's Allowance is a benefit paid if you are not in full-time work but are actively looking for work. Income-based Jobseeker's Allowance is means-tested and can be paid because you have not paid enough National Insurance contributions to qualify for Contribution -based Jobseekers' Allowance, or because you have already received that for six months.

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Incontinence

Incontinence, or problems 'holding on', means difficulty in controlling bladder or bowel movements. Both types of incontinence can affect people with MS.

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Infection

Infection is when bacteria, viruses, fungi or other organisms enter the body. It causes the body temperature to rise, which can feel like a relapse. It is important that infection is ruled out as a cause of any attack of symptoms.

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Inflammation

Inflammation describes the body's reaction to injury or infection. It is part of the immune response. Outside the central nervous system (CNS), inflammation causes the blood supply to the area to be increased and large numbers of white blood cells to be released. Inside the CNS, inflammation causes myelin damage. Active lesions in MS are sites of inflammation.

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Infusion

An infusion, also known as a drip, is a way of taking a drug. It is a liquid injected directly into a vein (usually in the arm) over a period of time.

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Intravenous infusion

An intravenous infusion is a method used to deliver some types of medication. It involves inserting the medication into the vein via a drip. This is usually done at a hospital.

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IVIg

Intravenous immunoglobulin (IVIg) is a treatment made from donated blood fluids. It used to be used as a treatment for MS if other treatments could not be used. However, it is not clear whether it is effective, and the Department of Health advises against its use for MS.

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Jobseeker's Allowance

Jobseeker's Allowance is a benefit paid if you are not in full-time work but are actively looking for work. To claim it, you must be between 16 and pension age, unemployed or working for fewer than 16 hours a week, and not be in full-time education.

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L'Hermitte's sign

A sudden, electric-shock-like sensation, that spreads into the arms or legs, often triggered when the neck is bent forward, or after a cough or sneeze.

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Lamotrigine

Lamotrigine is an anticonvulsant drug commonly used to treat epilepsy. It is known as a sodium channel blocker because it can block sodium molecules from entering cells. It is currently in phase 2 clinical trials for secondary progressive MS to examine its neuroprotective effects.

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Laquinimod

Laquinimod was a drug developed to treat relapsing remitting MS. It did not receive a licence due to disappointing trial results.

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Lasting Power of Attorney

A lasting power of attorney (LPA) is a legal document that lets you appoint people who can make decisions on your behalf if you become unable to do so. The two types of LPA cover 'health and welfare' and 'property and financial affairs'. In England and Wales it has replaced the 'enduring power of attorney'. There is a different process in Scotland and Northern Ireland.

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LDN

Naltrexone is licensed in the UK to help treat people who are addicted to opiates, such as heroin. Some research suggests that when naltrexone is given at low doses ('Low-dose naltrexone' or LDN), it may have an anti-inflammatory effect that could be beneficial in the treatment of MS. Currently there is not enough evidence-based information to prove LDN is an effective treatment for MS and it is not licensed for the treatment of MS in the UK.

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Lemtrada

Lemtrada is the brand name for alemtuzumab, a licensed treatment for active relapsing remitting MS. It has also been known as Campath.

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Lesion

In MS, lesions are patches of inflammation in the brain and spinal cord. Some lesions will spontaneously repair themselves and disappear. Others become permanent areas of visible scarring, known as plaques.

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Licensed treatment

A treatment that has been deemed safe and effective, and can be prescribed for use in people with a specific condition or symptom. In the UK the Medicines and Healthcare Products Regulatory Agency (MHRA) decides what treatments can been licensed.

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Lingo-1

Lingo-1 is an antibody designed to regenerate myelin that is being developed as a potential therapy for MS. A phase 1 study found the treatment to be safe to use in healthy volunteers. The drug will now be tested in phase 2 trials which will investigate the safety of the treatment in a larger group of people with MS.

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Living will

An 'advance directive' (also called an 'advance decision' or 'living will') allows you to refuse a specific medical treatment some time in the future, should you lose the capacity or ability to communicate your wishes regarding that treatment.

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Low-dose naltrexone

Naltrexone is licensed in the UK to help treat people who are addicted to opiates, such as heroin. Some research suggests that when naltrexone is given at low doses ('Low-dose naltrexone' or LDN), it may have an anti-inflammatory effect which could be helpful in treating MS. However, there is currently not enough evidence to prove LDN is an effective treatment for MS and it is not licensed for the treatment of MS in the UK.

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Lumbar puncture

A lumbar puncture is one of the standard tests that is used to diagnose MS. People with MS often have antibodies in the fluid that surrounds the brain and spinal cord. These antibodies are a sign that the immune system has been active in the central nervous system. The procedure used to get a sample of this fluid is called a lumbar puncture. It involves inserting a needle into the space around the spinal cord and drawing out fluid.

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Lymph glands

Lymph glands or nodes are small bean-shaped glands located throughout the body that form part of the immune system. White blood cells multiply in these nodes in response to an infection. This is why lymph glands become swollen at the site of an infection.

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Lymph nodes

Lymph nodes are small bean-shaped glands located throughout the body that form part of the immune system. White blood cells multiply in these nodes in preparation for an immune response. This is why lymph glands become swollen at the site of an infection.

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Magnetic resonance imaging

Magnetic resonance imaging (or MRI) is a technique used by doctors and researchers in the diagnosis and monitoring of MS, because it can detect lesions (areas of myelin damage) in the brain and spinal cord of people with MS.

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Magnetic transfer imaging

Magnetic transfer imaging (MT) is a new form of MRI that has been used extensively in MS research. It is better at detecting damage to the brain than standard MRI.

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Marburg MS

This is an extremely rare and very aggressive form of MS which is associated with rapidly increasing disability. Only a few cases are seen and little is known about this condition, though research continues.

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McDonald Criteria

The McDonald criteria are the guidelines used by neurologists to diagnose MS.

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Mental Capacity Act

Mental capacity is the ability to make decisions for yourself. The Mental Capacity Act 2005 protects people who are unable to do this, and also provides a framework for people who need to make decisions on behalf of someone who 'lacks capacity'. This might be due to illness, injury, a learning disability, or mental health problems. The principles cover important decisions relating to property and financial affair, as well as health and social care, and further information and advice should be sought.

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Methotrexate

Methotrexate is a chemotherapy drug that inhibits the immune system. It has been shown to reduce relapse rates in people with relapsing remitting MS.

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Methylprednisolone

Methylprednisolone is a type of corticosteroid which is often used to treat MS relapses. It can reduce inflammation, shorten the length of the relapse and help speed up recovery, although it doesn't affect the outcome of the relapse.

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Minocycline

Minocycline is an oral antibiotic used to treat acne. It has also been shown to have some anti-inflammatory properties, and one phase 2 clinical trial reported promising results in MS. Further trials are currently underway.

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Mitoxantrone

The drug mitoxantrone (brand name Novantrone) is approved in the US for treating secondary progressive MS and worsening relapsing remitting MS. It is currently licensed in the UK as a cancer-fighting drug, but not for MS, although it can be prescribed on an individual 'named patient basis'.

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Molecule

A molecule is the smallest part of a substance that can possibly exist on its own and still have the properties of that substance. It is usually made of a group of atoms, for example a molecule of water is made up of two hydrogen atoms and one oxygen atom.

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Motability scheme

Motability is a scheme which helps disabled people to become more mobile. People who receive the higher rate mobility component of Disability Living Allowance or Personal Independence Payment may exchange all or part of their allowance in return for a car, powered wheelchair or scooter.

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MRI

MRI (magnetic resonance imaging) scanners use strong magnetic fields to create an image of someone’s brain and spinal cord. If there are areas of inflammation or damage, or ‘lesions’, these show up on the scan.

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MS hug

A type of neuropathic pain caused by MS nerve damage in the brain or spinal cord. It feels like a tight band or constricting pain, usually around the trunk of the body.

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MS nurse

MS nurses are qualified nurses with specialist training in MS. They are a great source of information and advice, and they are the first point of contact for many people when they have concerns about their MS. Ideally, you should be referred to an MS nurse as soon as you are diagnosed (though a GP should be the person to contact about general health queries).

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Multidisciplinary teams

A multidisciplinary team (MDT) is a group of care professionals with different skills to help you manage your MS. For example, the team might include MS nurses, physiotherapists, occupational therapists, dietitians, pain specialists and psychologists. Because they are all part of one team, they can quickly and easily share information and refer you to their specialist colleagues when you need extra support.

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Musculoskeletal pain

‘Musculoskeletal pain’ is pain in muscles and joints. In MS, it is often the result of the stresses and strains the condition places on the body.

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Myelin

Myelin is made by cells in the central nervous system called oligodendrocytes. These cells wrap themselves around nerve axons very many times to form a protective myelin sheath. The myelin increases the speed at which nerve signals travel along axons and also protects nerve fibres from damage. In MS, myelin is vulnerable to attack from the immune system. Damage to myelin can cause the symptoms of MS.

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Myelination

Myelination is the process of producing myelin, the protective layer around nerves. Remyelination is the process of reforming myelin after it has been damaged by disease or injury.

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Natalizumab

Natalizumab is a licensed treatment for highly active relapsing remitting MS. Its brand name is Tysabri and it is administered by monthly infusion.

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National Institute for Health and Clinical Excellence

The National Institute for Health and Care Excellence (NICE) provides national guidance and advice to help improve health and social care. This includes the development of clinical guidelines, quality standards and appraising whether new, licensed treatments should be made available on the NHS in England based on their cost-effectiveness and safety profiles.

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Nerve cells

Nerve cells are cells in the nervous system that process and transmit information. MS affects the ability for nerve cells in the brain and spinal cord to communicate with one another.

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Nerve fibres

Nerve fibres (or axons) are the long extensions of nerves that make connections with muscles or other nerves. The nerve fibres in the central nervous system are protected by a layer of protein and fatty tissue called myelin.

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Neurological Commissioning Support

Neurological Commissioning Support is a joint initiative of the MND Association, MS Society and Parkinson’s UK. They work with commissioners and health and social care providers to make sure that the needs of people living with long-term neurological conditions are included in the commissioning of services.

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Neurological condition

Neurological conditions are conditions that affect the nervous system (the brain, spinal cord and peripheral nerves).

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Neurologist

A doctor who specialises in conditions involving the central nervous system (the brain, spinal cord and nerves).

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Neurology

The study of the function of nerves and the treatment of conditions of the nervous system.

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Neuromyelitis optica

Neuromyelitis optica (NMO), sometimes known as 'Devic's disease', is a condition mainly affecting the spinal cord and optic nerve (the nerve connecting the eye to the brain). Like MS, it is a 'demyelinating' condition - it damages the protective myelin sheath around the nerve fibres. And like MS, too, it is an autoimmune condition. The symptoms of NMO can be similar to those of MS, which means they can be easily mistaken. However, test results should show which condition you have. The NHS has good information on NMO on the NHS Choices website http://www.nhs.uk/conditions/neuromyelitis-optica and on the NHS NMO site http://www.nmouk.nhs.uk/.

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Neuron

Neurons are specialised nerve cells that carry messages to and from the brain.

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Neurotransmitter

Neurotransmitters are chemical signals used to transmit information from one nerve to another or from a nerve to a muscle.

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Neutralising antibodies

Sometimes the body's immune system begins to react against a drug by producing antibodies, which might prevent the drug from being effective.

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NICE

NICE (the National Institute for Health and Care Excellence) provides national guidance and advice to help improve health and social care. This includes the development of clinical guidelines, quality standards and appraising whether new, licensed treatments should be made available on the NHS in England based on their cost-effectiveness and safety profiles.

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NICE guidelines

The NICE guidelines for MS were updated in 2014 and provide evidence-based recommendations for managing MS on the NHS. Decisions on how NICE guidance applies in Wales, Scotland and NI are made by the devolved administrations, who are often involved and consulted with in the development of NICE guidance.

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NMO

NMO (neuromyelitis optica), sometimes known as 'Devic's disease', is a condition mainly affecting the spinal cord and optic nerve (the nerve connecting the eye to the brain). Like MS, it is a 'demyelinating' condition - it damages the protective myelin sheath around the nerve fibres. And like MS, too, it is an autoimmune condition. The symptoms of NMO can be similar to those of MS, which means they can be easily mistaken. However, test results should show which condition you have. The NHS has good information on NMO on the NHS Choices website http://www.nhs.uk/conditions/neuromyelitis-optica and on the NHS NMO site http://www.nmouk.nhs.uk/.

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Nutritionist

A nutritionist can provide general information about food and healthy eating, but they can't provide information about special diets for medical conditions. If MS is affecting what or how you eat, a dietitian can help.

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Occupational therapist

Occupational therapists (also known as OTs) can help you to do activities that, because of your MS, you may have difficulty carrying out every day. They can also suggest making changes to your physical environment, altering the way you do a task, or they can show you how to relearn to do something.

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Occupational therapy

Occupational therapy helps people who have difficulties with practical everyday tasks to live as independently as possible - at home, in employment or in education. Occupational therapists work in health and social care and work closely with health, housing and educational services.

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Off-label

Some treatments are used which aren’t licensed specifically for treating MS. This is known as ‘off-label’ use. For example, some antidepressants can be used for treating pain.

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Oligoclonal bands

A group of proteins found in blood serum, plasma, or cerebrospinal fluid (CSF). Doctors look for the presence of oligoclonal bands in the CSF in order to help diagnose MS since a majority of people with MS have them.

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Oligodendrocytes

Oligodendrocytes are cells responsible for producing the myelin sheath surrounding nerve fibres, which gets damaged in a person with MS.

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Open label trial

A clinical trial where both the trial investigator and the participant know which treatment the participant is receiving.

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Optic neuritis

Optic neuritis is the name for inflammation (swelling) of the optic nerve. This is the nerve that carries messages from your eyes to your brain. Effects vary, and can range from blurred vision in one or both eyes to complete loss of sight. In some cases optic neuritis can be painful, particularly when you move your eyes.

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Oral treatment

A drug or treatment which can be taken by mouth, such as a tablet or capsule.

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Orthotist

Orthotists are responsible for all aspects of supplying an orthosis (devices that are fitted to an existing body part in order to improve its function or reduce pain.)

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Palliative care

Palliative care can help someone with advanced MS to have the best possible quality of life. It can relieve pain and other symptoms, while providing psychological, social and spiritual support for you, your family and your carers. This is known as taking a 'holistic' approach to care.

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PALS

The Patient Advice and Liaison Service (PALS) offers confidential advice, support and information on health-related matters. They provide a point of contact for patients, their families and their carers. If you are not happy with any NHS services, or feel you are not getting the treatments you need, you can contact them. Ask your local GP or hospital reception for the contact details of your local service.

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Pathology

Pathology is the study of diseases.

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PEG

A PEG (percutaneous endoscopic gastrostomy) allows liquid food to go directly through a tube into the stomach. It can be a relief to those who have severe chewing or swallowing difficulties. People can sometimes continue to eat a little by mouth, so they don't lose the chance to enjoy their favourite foods.

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Peripheral nervous system

The peripheral nervous system is the collective name for the parts of the nervous system that are outside of the brain and spinal cord. It includes the nerves relaying information from the senses and the nerves that relay signals from the central nervous system out to the muscles.

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Personal budgets

A personal budget is the amount of money allocated to pay for your social care. The amount you are eligible for is set out in your support plan and you can pay for anything with your personal budget so long as it is helping you to achieve the outcomes agreed in your support plan.

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Personal health budgets

A personal health budget is an amount of money allocated to you to help you meet your identified health and wellbeing goals. The amount you are eligible for and how you will spend it is set out in your care and support plan. At the moment, personal health budgets are only available for people receiving continuing health care.

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Personal Independence Payment

Personal Independence Payment (PIP) is a benefit for people of working age who have a long term health condition or disability.

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Personalisation

Personalisation refers to a new focus in social care services on giving people more of a say in the support they need. It is also sometimes referred to as 'self-directed support'.

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Phase 2 clinical trial

The second phase in clinical trials aims to investigate the safety and effectiveness of a potential therapy. Usually between 100 and 300 people will be enlisted to take part with the aim of determining whether the treatment will be safe and effective to treat a condition.

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Phase 3 clinical trial

If previous trials have indicated a treatment is safe and that it also shows promise in being able to treat a condition, phase 3 clinical trials begin. These involve large numbers of participants, typically more than 1,000, and are often spread between different hospitals and countries. If these trials show that a drug is safe and effective, the manufacturers can apply for a drug license.

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Phase I clinical trial

Phase I is the first stage of a clinical trial. It is to ensure a treatment is safe for people to take, rather than to try to treat a condition. These trials are very small, (typically around 30 people), and usually involve volunteers or sometimes patients.

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Physiotherapist

Physiotherapists use techniques such as exercise and movement of the body to improve health. Some physiotherapists train in neurology and are known as ‘neuro-physiotherapists’. If you experience a relapse or have new symptoms that affect day-to-day tasks, you might benefit from physiotherapy.

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Physiotherapy

Physiotherapy is the use of physical exercise or massage to treat a condition. A physiotherapist works with you to assess your physical difficulties, and suggest exercises that concentrate on a particular area of your body or help you manage a specific effect of MS.

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PIP

PIP (Personal Independence Payment) is a benefit for people of working age who have a long term health condition or disability.

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Placebo

A placebo is a dummy treatment used in clinical trials. It has no effect and is given to people to compare their response to those taking the 'real' treatment. It allows researchers to test for the 'placebo effect'. This is a psychological response where people feel better even though what they are taking has no effect. By comparing people's responses to the placebo and to the drug being tested, researchers can tell whether the drug is having any real benefit.

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Plaque

Plaques are areas of damage in the brain or spinal cord caused by MS. They can be detected by MRI scanners.

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PML

PML (Progressive multifocal leukoencephalopathy) is a viral brain infection. It is a rare but very serious side effect of natalizumab (Tysabri), which is used to treat highly active relapsing remitting MS.

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Prescription pre-payment certificate

If you pay for your prescriptions, a prescription prepayment certificate (PPC) may make them cheaper, especially if you’re likely to need several throughout the year. You can only buy a PPC for your own prescriptions and they are only available if you live in England. Your GP or pharmacy will have information on how to apply.

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Primary Care Trusts

Replaced by clinical commissioning groups (CCGs) in 2012, primary care trusts (PCTs) were a type of NHS trust in England. PCTs provided some primary and community services or commissioned them from other providers, and were involved in commissioning secondary care.

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Primary progressive MS

People with primary progressive MS don't have any distinct attacks or remissions, but begin with subtle problems that slowly get worse over time. Their MS is progressive from the start.

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Progressive MS

People with progressive MS experience a steady build up of symptoms over time, rather than relapses followed by remission. There are 2 types of progressive MS: primary progressive and secondary progressive.

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Progressive multifocal leukoencephalopathy

Progressive multifocal leukoencephalopathy (PML) is a serious and often fatal condition caused by a viral infection in the white matter of the brain at multiple locations. It occurs almost exclusively in people with severe immune deficiency, e.g. transplant patients on immunosuppressive medications, or AIDS patients. It is a rare side affect for people taking the MS drug natalizumab/Tysabri. The risk of developing PML is about one in 1,000 for people who taking natalizumab for more than 12 months. The risk increases after 2 years of therapy. Patients with MS should be informed about the risks of natalizumab, including PML, both before treatment and again after 2 years. They will be monitored regularly to identify PML and other potentially serious side effects as early as possible.

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Protein

Proteins are complex molecules made up of amino acids. There are thousands of different types of protein in the body that all have very different roles to play within cells.

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Pseudo-relapse

A pseudo-relapse is a flare-up of symptoms caused by a raise in body temperature, for example as a result of exercise, a hot bath or a fever. No permanent harm will come from these pseudo-relapses, and once whatever is causing the raised body temperature has gone away, so will the symptoms.

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PubMed

PubMed is a large database run by the National Institutes of Health in the USA. It contains lists of published research papers that are searchable by author, keyword, date, journal and institute.

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Randomisation

Randomisation is a part of the clinical trial process where participants are allocated at random to the treatment groups, usually using a computer programme. This is done so that each group has a random mix of people of different ages, sex and state of health. This ensures that if one group improves after treatment it is due to the therapy provided and not other factors.

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Rehabilitation

Rehabilitation can combine many different approaches to managing MS – physiotherapy, occupational therapy, dietary advice, employment services, support for care at home, and so on. Whatever services are involved, the aim is to lessen the impact of MS on someone’s life.

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Relapse

A relapse or flare-up of symptoms (also known as an attack or exacerbation) is defined by the appearance of new symptoms, or the return of old symptoms, for a period of 24 hours or more – in the absence of a change in core body temperature or infection. Relapses occur when inflammatory cells attack the myelin of specific nerve fibres, interfering with the job the nerve normally does. For example, inflammation in the optic nerve may result in visual problems. Relapses usually take a few days to develop and can last for days, weeks (most commonly) or months, varying from mild to severe. Relapses occur when inflammatory cells attack the myelin of specific nerve fibres, interfering with the job the nerve normally does. For example, inflammation in the optic nerve may result in visual problems. Relapses usually take a few days to develop and can last for days, weeks (most commonly) or months, varying from mild to severe.

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Relapsing remitting MS

In relapsing remitting MS, people have relapses or attacks of symptoms that occur for a period of time – days, weeks or months – and then improve, either partially or completely. Around 85 per cent of people with MS are diagnosed with this type.

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Remission

In relapsing remitting MS, people have distinct relapses - or attacks - of symptoms, followed by periods of remission. During remission, symptoms improve or go away entirely. Periods of remission can last for weeks, months or even years.

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Remyelination

Remyelination, or myelin repair, is the replacement of lost or damaged myelin surrounding nerve fibres. When myelin becomes damaged or lost, this exposes the nerve fibres themselves to damage or loss, which can lead to permanent disability. As there are currently no treatments that can repair damaged myelin, this is a major focus of MS research.

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Risk-sharing scheme

The Risk Sharing Scheme was set up by the Department of Health in 2001 as a way of making MS disease modifying treatments glatiramer acetate and interferon betas available following a judgement by NICE that they were not cost effective. The cost of the drugs is shared by the Department of Health and the manufacturers of the drugs. If the drugs fail to be as effective as promised during the scheme, the manufacturers will subsidise the cost by reducing prices. The scheme applies throughout the UK and is due to run until 2015.

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Rituximab

Rituximab is a potential treatment for MS. It is a monoclonal antibody that has been used to treat certain types of blood cancer. It targets certain cells of the immune system that may be involved in inflammation and has been trialled in people with MS.

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Sativex

Sativex is a cannabis-based oral spray licensed for the treatment of spasticity in people with MS. At present, it is only available on the NHS in Wales.

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Scottish Medicines Consortium

The Scottish Medicines Consortium (SMC) provides advice about medicines to NHS Scotland. The SMC appraises new medicines independently of NICE in England.

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Secondary progressive MS

This is a type of MS that many people with relapsing remitting MS go on to develop. If someone's MS symptoms have become progressively worse over a period of at least six months, they can be said to have moved on to secondary progressive MS. Some people continue to have relapses in addition to progressive deterioration, while others don't.

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Self-management courses

Self-management courses help people who are living with a long-term health condition to manage their condition better on a daily basis.

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Serotonin

Serotonin is a neurotransmitter. It is a chemical signal that transmits information from one nerve to another. Lowered levels of serotonin in the brain are linked to depression. Drugs like fluoxetine work by raising serotonin back to normal levels.

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Sex hormones

It is well established that females are more susceptible to relapsing remitting MS than males. In addition, the frequency of relapses reduces by up to 70 per cent during pregnancy, particularly late stages of pregnancy. These observations have led researchers to investigate the role of the gender-specific hormones estriol (a pregnancy hormone) and testosterone (a male hormone) in reducing relapses in MS. Current studies are being done to investigate the effects of these hormones on relapses in MS.

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Side effects

Side effects are unwanted symptoms caused by a medical treatment. All treatments can have side effects, but not everyone who takes the treatment will have these side effects. With all treatments, it can be a case of weighing the benefits against possible side effects and finding the best compromise. Over time, you and your doctor or MS nurse might make adjustments to the drugs you use or the dose you take, to find the best for you.

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Significance

If a result in a test or trial is significant, this means that a statistical analysis has been carried out to show the result is unlikely to have occurred by chance, and is therefore likely to be due to the treatment given.

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Simvastatin

Simvastatin was originally developed to help lower cholesterol levels. It has also been studied for its ability to decrease the number of lesions and reduce inflammation in people with MS. A phase 2 clinical trial of simvastatin in people with secondary progressive MS reported that the drug might slow disability progression.

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Smoking

There is now a body of evidence that smoking could be a risk factor for developing MS. It's not yet clear exactly why this is, although one theory is that the chemicals in cigarette smoke affect the immune system. A study has shown that cigarette smoking worsens the motor functions (transfer of nerve impulses to muscles) in people with MS, when compared to people who do not have MS.

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Spasticity

Spasticity describes a tightness or stiffness in the muscles, which can make it difficult to move the affected muscles. It is a common symptom of MS.

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Speech and language therapist

Speech and language therapists can diagnose, assist and treat speech and swallowing problems. Your MS nurse or GP can refer you.

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Statutory sick pay

Statutory Sick Pay (SSP) is paid by your employer for up to 28 weeks if you are too ill to work. It can be paid if you have been off work sick for 4 or more days in a row (including non-working days).

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Stem cell therapy

Stem cell therapy is any treatment that uses or targets stem cells. This is usually to replace or repair damaged cells or tissue, but can also be used to prevent damage from happening in the first place. There is a potential to use stem cells to grow different new nerve cells, but research into stem cells is still at the very early stages. The MS Society supports all types of stem cell research.

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Stem cells

Most cells in the body can only do one job, for example, a skin cell can never become a brain cell. Stem cells however, have the potential to become other types of cell, such as cells in the muscles, blood or brain.

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Steroids

Steroids - also called corticosteroids - are used to treat relapses. They can help to reduce inflammation and speed up recovery. They are synthetic versions of natural hormones found in the body.

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Support plan

If you have been assessed as needing support from social care services, you and your social worker will agree a support plan. This is a personalised guide to the money, services and equipment identified in your assessment.

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Supportive listening

Supportive listening is a treatment that helps people find their own solutions by talking through experiences, thoughts and feelings in a non-judgmental listening environment.

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Tecfidera

Tecfidera is the brand name for dimethyl fumarate, a licensed treatment for people with relapsing remitting MS. It has also been known as BG-12.

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TENS

TENS (Transcutaneous electrical nerve stimulation) is a form of electrical stimulation applied through pads attached to the surface of the skin. It is based on principles similar to acupuncture. TENS machines may help to control pain, particularly the pain that some people experience with muscle spasms.

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Teriflunomide

Teriflunomide is a licensed treatment for people with relapsing remitting MS. Its brand name is Aubagio.

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Tissue Bank

A tissue bank is an establishment that collects human brain and spinal cord tissue for medical research. The MS Society Tissue Bank is the largest distributor of MS brain and spinal cord tissue in Europe and contributes to a number of projects every year. To date, the MS Society Tissue Bank has donated over 4,000 individual samples of brain and spinal tissue to projects related to MS. Samples from the MS Society Tissue Bank prove particularly vital to MS research since it can potentially help answer questions about the causes and progression of MS.

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Trigeminal Neuralgia

Trigeminal Neuralgia (TN) is an extremely severe facial pain that tends to come and go unpredictably in sudden shock-like attacks. The pain is often described as stabbing, shooting, excruciating, burning, extremely strong. The pain usually lasts for a few seconds, but there can be many bursts of pain in quick succession. In MS, it is caused by damage to the myelin coating on the trigeminal nerve.

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Tysabri

Tysabri is the brand name for natalizumab, a licensed treatment for highly active forms of relapsing remitting MS.

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Uhthoff's phenomenon

Refers to the temporary changes in symptoms many people with MS have due to heat. It was named after Dr Uthoff, a German eye specialist, who noticed that people with optic neuritis had worse symptoms when they were exercising.

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Unlicensed treatment

Most medicines used in the UK have a licence that says exactly how it can be used. If it is used in a way that does not meet the strict rules set out in the licence, this is described as ‘unlicensed use’ or off-label use.

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Unproven treatments

Treatments that have not undergone clinical trials, and have no clinical evidence to prove they work.

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Urinary frequency

Urinary frequency describes the need to empty the bladder on a very regular basis. It is a common symptom of MS, caused by damage to the nerves associated with the bladder muscles.

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Urinary urgency

This term describes an inability to ‘hold on’ – one of the effects of an overactive bladder along with ‘frequency’ – a need to urinate frequently. For many people with MS, when the nerve pathways in the spine are interrupted, faulty reflexes can appear so that even a small amount of urine in the bladder causes it to contract.

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Vaccination

Vaccination, or immunisation, is when the body is injected with a harmless form of a virus. This allows the immune system to learn the virus and produce natural antibodies to it. It means that if the person catches the real virus, the body will already know how to fight it (they will be immune). The general consensus within the medical field is that vaccinations do not increase the risk of onset or relapses in MS. There is no reason to advise people with MS, their relatives and children, or the general population to avoid vaccinations.

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Virus

A virus is a tiny microbe, much smaller than bacteria. They do not have the ability to reproduce themselves so have to infect living cells to grow and multiply. Viruses therefore enter cells in the body to cause diseases such as flu and chicken pox. There is a lot of research looking at viruses as a potential cause or trigger in MS. The most studied example to date is the Epstein Barr Virus (EBV), but it remains unclear as to whether EBV has any role in causing or contributing to MS.

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Visual evoked potential

A VEP test measures electrical activity in the brain in response to visual stimuli (e.g. a flashing light). The activity is measured by placing electrodes on the scalp. If the brain is damaged, nerve activity is slowed down. VEPs are used to diagnose MS - the VEP is affected in approximately 90% of people with the condition.

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Vitamin B12

A vitamin that is essential in the functioning of the brain and nervous system. There is some evidence supporting the theory that a lack of vitamin B12 can speed up the process of demyelination, and vitamin B12 deficiency can sometimes be confused with MS.

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Vitamin D

Several studies have suggested that vitamin D plays a role in MS - but the exact nature of the relationship between the vitamin and MS is still unclear.

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White blood cells

White blood cells are part of the immune system. They are circulated round the body in the bloodstream and lymphatic system so that they are always available at sites of infection or injury.

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White matter

The white matter in the central nervous system refers to the areas containing nerve fibres that are sheathed in myelin. It is the myelin that gives it a white appearance.

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