Glossary

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Access to Work

Access to Work is a government scheme that gives you and your employer advice and support with extra costs which might arise because of your needs.

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Acetylcholine

Acetylcholine is a neurotransmitter. It is a chemical signal that transmits information from one nerve cell

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Adhesion molecules

Adhesion molecules are found on the surface of cells and help cells 'stick' together. They are important in MS because they are involved in inflammation. Cells lining the blood vessels produce adhesion molecules in areas of inflammation. These cells can then 'capture' passing white blood cell. Once 'captured', white blood cells can enter the brain and attack myelin. Researchers hope that blocking the action of adhesion molecules will prove to be a useful treatment for MS.

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Advance care planning

Advance care planning can be used to set out a person?s preferences and wishes in relation to their future care, especially whether they wish to refuse certain specific forms of treatment or would like to grant a lasting power of attorney to a relative or friend.

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Advance decision

Advance care planning can be used to set out a person's preferences and wishes in relation to their future care, especially whether they wish to refuse certain specific forms of treatment or would like to grant a lasting power of attorney to a relative or friend.

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Advance directive

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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Advance statement

Advance statements are general statements of your views or wishes. You can make an advance statement to request certain forms of medical intervention and make positive statements about the range of treatments and types of care you wish to receive in the event that you lose capacity to express your views in the future.

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

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Alemtuzumab

Alemtuzumab (pronounced: al-em-tooz-oo-mab) is a licensed first-line annual infusion 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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Allele

An allele is one of the possible forms of a gene. For example, 'brown' and 'blue' are two alleles of a gene that affects eye colour.

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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 which are made from RNA.

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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

Preventing or reducing inflammation. (inflammation is the body's response to injury, irritation, or infection). Active lesions in the brain of people with MS are sites of inflammation.

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Antibodies

Antibodies are molecules made by immune cells called plasma cells. They recognise and bind to specific molecules called antigens. Antibodies that plasma cells make stick to the antigens on foreign material in the body. They signal to the immune system that the foreign matter must be destroyed.

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Anticholinergics

Anticholinergics are drugs used to treat spasticity and bladder problems. They reduce nerve cell activity by blocking the neurotransmitter acetylcholine.

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Antigen

Antigens are molecules that trigger an immune response. Antigens act like identification tags for unwanted or foreign material. Antigens are recognised by molecules produced by the immune system called antibodies. An antibody bound to an antigen on the surface of a foreign body, signals to the immune system that the foreign body must be destroyed.

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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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Apoptosis

Apoptosis (also known as programmed cell death) is cell death that occurs during normal growth and development of the body. During development there is a continual turnover of cells which helps the body get rid of old unwanted cells and stops the growth of tumours. Apoptosis is a very specific process which occurs when a cell recieves specific signals from the body to die or stay alive.

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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. The group is made up of over 40 MPs and peers, and meets around four times per year. The current chair is the former Minister for Care and Support, the Rt. Hon. Paul Burstow MP

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Astrocyte

Astrocytes are star-shaped cells within the central nervous system (CNS). Astrocytes provide nerve cells with nutrients and structural support and are also involved in laying down the scar tissue typical of MS lesions.

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Astrogliosis

Astrogliosis describes an increase in the number of brain cells called astrocytes. These cells multiply at sites of damage in the central nervous system (CNS), such as an MS lesion, and lay down a dense network of fibrous scar tissue.

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Ataxia

Ataxia refers to uncoordinated movements. It is caused by damage to nerve cells, not by muscle weakness.

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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 tax-free benefit for disabled people aged 65 or over who need help with personal care.

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Aubagio

Aubagio is a licensed tablet taken once a day as a first-line treatment for people with relapsing remitting MS. Its scientific name is teriflunomide.

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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, specialised immune cells in the body enter the brain and mistakenly attack myelin.

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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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B-cell

B-cells are a specialised type of white blood cell that form part of the immune system. When B-cells come across foreign material, they release molecules called antibodies. These molecules bind to the foreign matter, signalling to the immune system that this material must be destroyed. B-cells are thought to play a role in the attack on myelin in MS.

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Baseline

The severity of a person's symptoms or disability are assessed at the start of a clinical trial and used to measure change during the trial.

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Bee venom therapy

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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Benign MS

A form of multiple sclerosis that entails infrequent relapses and few symptoms. It is usually diagnosed retrospectively.

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Beta-interferon

Beta-interferon is a licensed first-line treatment for relapsing remitting MS, admisistrered by injection. It is available on the NHS in the UK. Brand names: Avonex, Rebif, Betaferon and Extavia.

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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 two or three 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) that can diagnose and/or chart the course of a condition. Currently the only known biomarker for diagnosing MS are oligoclonal bands that can be detected by a lumbar puncture. This biomarker is also not 100% reliable, meaning that other tests need to be carried out in conjunction (like MRI) before a diagnosis can be made. Current research is focusing on discovering a biomarker that can be detected by a simple blood or urine test.

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Blind clinical trials

Blinding is a method used in clinical trials to control and limit bias introduced by participants and researchers. Single blind clinical trials are clinical trials where participants do not know if they are taking a drug or a placebo treatment. If they knew which treatment they were getting it might influence how they felt or reported their symptoms.

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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 provides a range of parking benefits and other motoring concessions for people with mobility difficulties who travel either as drivers or as passengers.

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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 is licensed for the treatment of people with MS who have symptoms of an overactive bladder. It is administered by injection and is approved for use in Scotland and Wales.

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Brain perivascular macrophage

Brain perivascular macrophages are large white blood cells that line the blood vessels in the brain. They are part of the immune system. Researchers are trying to find out what role these cells have in causing inflammation in MS.

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Brainstem

The brainstem is the lower part of the brain that connects to the spinal cord.

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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 However a cannabis-based oral spray called Sativex is licensed for the treatment of spasticity in people with MS.

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Care & Repair agencies

Care & Repair are advisory and support agencies who work improve the housing conditions of older and disabled people. They can offer help to repair, improve, maintain or adapt people's homes. There are approximately 230 home improvement agencies in England, and over 90% of residents in England have access to a home improvement agency.

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Care and Support Alliance

The Care and Support Alliance was set up in July 2009 as a consortium of over 40 organisations that represent and support older and disabled people, including disabled children, those with long-term conditions and their families. The Alliance has been at the forefront of raising political awareness of the chronic underfunding of social care and continues to work to achieve sustainable reform of the care and support system and how it is funded. Organisations include Alzheimer’s Society, Carers UK, Mencap, Parkinsons UK and RNIB.

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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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Care plan

If you receive a care assessment from social services and are found to be eligible for care, local health and social services teams will discuss this with you and put together a care plan. Services you may need might include healthcare, 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. In MS, catheters are most often used to empty the bladder via the urethra.

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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.

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CDP323

CDP323 is an oral drug that was initially designed to prevent immune cells from entering the brain. It was in phase II clinical trials for treating relapsing remitting MS. In June 2009, clinical trials were discontinued because the drug did not appear to be effective in treating MS.

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Central Nervous System

A system made up of the brain and spinal cord that is responsible for controlling all functions in the body. Most of the CNS is made of neurons (brain cells) and axons covered in myelin sheaths (a fatty substance that protects neurons). It is through this basic structure that signals or impulses travel to and from the brain and control movement and muscle function.

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Cerebral cortex

The cerebral cortex is the outer layer of the brain, the wrinkled part that is visible from the outside. Most of the complex functions of the brain, i.e. thinking, remembering and speaking are carried out by the cerebral cortex.

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Cerebral hemispheres

The cerebral hemispheres are the visible halves of the brain - left and right.

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Cerebrospinal fluid

Cerebrospinal fluid is a clear bodily fluid that surrounds the brain and spinal cord. Examination of specific proteins in the fluid called oligoclonal bands can be done by taking a lumbar puncture and is often helpful in diagnosing MS.

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Chemokine

Chemokines are 'chemical messengers' or molecules that affect the behaviour of immune cells. Most chemokines are involved in attracting immune cells to where they are needed. Different chemokines will attract different types of cells.

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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.

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Citizens Advice Bureau

Citizens Advice Bureaus 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 (pronounced: klad-ruh-bean) 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). It is what's called an anti-metabolite. It stops cells from making essential molecules, which prevents them from growing and they therefore die.

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Clinical commissioning groups

Clinical commissioning groups (CCGs) took the place of primary care trusts in England as a result of the NHS reform and Health and Social Care Act 2012. 211 CCGs are responsible for commissioning healthcare services across England.

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Clinical trial

Clinical trials are research studies involving humans, which aim to evaluate the safety and effectivness 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

A clinically isolated syndrome (CIS) is a set of symptoms which, like MS, may well be due to damaged myelin around nerve fibres. Unlike MS, there have been no other attacks. Optic neuritis is a common example. Some people with a 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

If muscles jerk repeatedly, this is known as ?clonus?, for example when a foot taps repetitively on the floor. This type of spasm can be a symptom of MS.

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Cognitive Behavioural Therapy

Cognitive behavioural therapy (CBT) is a type of talking therapy designed to influence the way people feel about their thoughts, emotions and actions through a goal-orientated, systematic approach. It is currently being used for relief of certain symptoms experienced by people with MS

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Cognitive dysfunction

Cognitive dysfunction describes the problems that some people with MS have with thinking and remembering.

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Cold Weather Payments

f 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 and social care services to refer to the arrangement or provision of services, like physiotherapy or occupational therapy.

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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 help people on low incomes who are moving out of residential care to live independently in the community.

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Complementary therapies

Complementary and alternative medicine therapies 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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Contribution-based Jobseeker's Allowance

You may be entitled to claim contribution-based Jobseeker's Allowance if you have paid enough National Insurance contributions (NICs). Jobcentre Plus can pay this for up to 182 days.

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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 a licensed first-line treatment for people with relapsing remitting MS, administered by daily injections. It is available on the NHS across the UK and its scientific name is glatiramer acetate.

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Corpus callosum

The corpus callosum is a broad track of nerve fibres that connects the two halves of the brain.

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Corticosteroids

Steroids are naturally occurring hormones in the body. Corticosteroids are hormones produced by the adrenal gland in times of stress. They are effective in reducing inflammation. Synthetic versions of corticosteroids are used to treat relapses in MS.

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Council tax benefit

Council Tax Benefit provides help with your council tax, if you are on a low income.

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CT scan

Computed tomography scan was often used to detect lesions in the brain of people with suspected MS at diagnosis before the development of MRI. CT-scanning is not often used in the diagnosis of MS as it is less sensitive than MRI scanning and, unlike MRI, involves doses of radiation.

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CUPID

CUPID stands for Cannabinoid Use in Progressive Inflammatory brain Disease. CUPID is a clinical trial which will evaluate whether THC, one of many chemical compounds (cannabinoids) found in the cannabis plant, might slow the development of disability in MS.

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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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Cytokine

Cytokines are molecules that affect the behaviour of cells. They are produced by cells of the immune system and signal to other cells to respond. Cytokines play a major role in controlling the immune system response. There are many different types produced by different cell types. They can signal immune cells to do a number of things including growing, dividing, dying, and turning into a different cell type.

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Daclizumab

Daclizumab (pronounced: da-kliz-uh-mab) is a potential treatment currently in phase III trials. [link]

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Deep brain stimulation

Deep brain stimulation, or thalamic stimulation, is a type of surgery which involves using fine needles inserted into the brain to identify the source of tremor. Once the source is identified, surgeons leave electrodes in place in the thalamus. The electrodes deliver a small electric current to the thalamus, which can sometimes calm the tremor. For a few people with severe tremor, this surgery may offer a chance of improvement in their quality of life. However, surgery would only be considered when other options are not effective and is only appropriate for a few people. Surgery to reduce tremor in MS is still at an early stage of development. Few centres carry out this surgery and there remains much to learn about it.

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Demyelination

Demyelination refers to the destruction, loss or removal of the myelin sheath from a nerve fibre (axon).

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Dendritic cells

Dendritic cells are a type of white blood cell found in the spleen and the lymph nodes. They are involved in triggering an immune response.

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Deoxyribose nucleic acid

DNA is the genetic material found inside every living cell. Genetic information that is contained in DNA can be translated into RNA and then proteins within cells.

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Diagnostic criteria

The diagnostic criteria for MS are the clinical, laboratory and MRI findings that confirm that a person has MS.

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Direct Payments

Direct payments are cash payments that are made to people who have been assessed as needing social care services. People receive cash for the services they need instead of receiving services directly from the local authority. Many recipients use their payment to employ a personal assistant - meaning they also take on legal responsibility of acting as their employer.

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Disability Discrimination Act

See the Equality Act

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Disability Employment Advisor

Disability Employment Advisers are nased 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 is a benefit that many people with MS receive if they need help getting around and/or looking after themselves. It is being replaced with Personal Independence Payment (PIP) for people of working age.

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Disabled Facilities Grant

Disabled Facilities Grants are local council grants to help towards the cost of adapting your home, to enable you to continue to live there.

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Disease modifying drugs

Disease modifying drugs are not a cure for MS, but they can reduce the number and severity of relapses. Unfortunately, research to date has shown that these drugs are of no benefit for people with primary progressive MS. It is not yet known whether any of these MS drugs will slow down the rate of disability in the long term.

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DLA

Disability Living Allowance is a benefit that many people with MS receive if they need help getting around and/or looking after themselves. It is being replaced with Personal Independence Payment (PIP) for people of working age.

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Dose

The amount of drug given to someone to produce a therapeutic response.

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Double blind trials

In a double blind trial neither the participant nor the trial investigators know whether the participants are taking the drug being studied, or another drug for comparison or a placebo. This avoids the doctors' and patients' hopes and expectations influencing the results of the trial.

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Doxycyclin

Doxycyclin 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 the most common form of speech problem for people with MS, where MS damage in different parts of the brain affects the way speech is produced. For example, damage in one part of the brain might affect the muscles of the tongue and lips, making it difficult to pronounce precise sounds. Damage in another area might weaken the diaphragm, affecting breath control and volume.

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Dysphagia

Dysphagia is the medical name for swallowing difficulties. MS can cause dysphagia if there is damage to any part of the brain that controls swallowing, or damage to the connections between the brain and the spinal cord (the brainstem).

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Dysphasia

Dysphasia is a type of speech impairment that can happen with MS, but it is rare. Dysphasia can make it hard to understand what is being said (receptive dysphasia), or difficult to recall vocabulary or find the right way to say something (expressive dysphasia).

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Edinburgh Centre for Translational Research

The Edinburgh Centre for Translational Research is aimed at promoting collaboration between scientists and clinicians from many disciplines of MS research to speed up the process of drug discovery and delivery of potential therapies into clinical trials.

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Electroencephalogram

An EEG 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 specialised to have a specific function. Stem cells are different because they are early precursor cells which can reproduce themselves, and they have the potential to specialise and become other cells, like cells in muscle, blood or the brain.

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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

An enduring Power of Attorney (EPA) is a legal document that allows someone you have chosen to make decisions about your property and financial affairs. They have now been replaced by Lasting Powers of Attorney (LPAs).

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Enzyme

A protein molecule produced by living organisms which is able to able to speed up, or facilitate, a specific chemical reaction involving other substances or chemicals without itself being destroyed or changed in any way. For example, enzymes used in the gut to aid digestion or breakdown of 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 infects around 95 per cent of the population in the UK. Most people have no symptoms but in some severe cases infection can result in glandular fever. Research has shown an association between EBV and MS, but more research is needed in order to find out if EBV has any role in causing or contributing to MS.

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Equality Act

The Equality Act (which replaced 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.

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Equity release schemes

Equity release is a way for homeowners aged 55-95 to release cash locked up in their home to provide a lump sum or regular income. The money released can be spent in any way you choose. People often use it to pay for care for a relative or simply as a way to relieve the strain of daily living costs.

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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 a measurement of the time it takes for stimuli to reach the brain. For example, a physician will shine a light in a patient?s eye or place a small stimulus on the surface of the skin, and will then monitor the brain for how long it takes for this stimulus to reach the brain. If it is delayed, it can be evidence of a neurological problem.

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Expanded Disability Status Scale

A scale used to quantify the disability of multiple sclerosis. It ranges from 0 (no detectable disability) to 10.

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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 that provides opportunities for people to develop new skills to manage long-term conditions on a day-to-day basis. It doesn't address MS specifically, and people on the courses may have other long-term conditions. You can find out more about courses in your area from your GP or MS nurse, or by visiting their website.

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Extracellular matrix

The extracellular matrix is the material that surrounds cells. It helps cells 'stick' together and provides some protection from the external environment. In the central nervous system, specific molecules in the extracelluar matrix affect the growth of nerve fibres and may be involved in myelination.

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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 (pronounced: fam-pri-deen) is a licensed tablet for use by people with MS to help improve walking speed and ability. Its brand name is Fampyra.

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Fatigue

Fatigue is a clinical symptom of MS and described as a feeling of overwhelming tiredness. It is a common symptom of MS, affecting 85% of people with the condition.

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FES

Functional Electrical Stimulation (FES) is a non-invasive device that can help some people with MS to walk by using electrical current to stimulate nerves and move parts of the body.

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Fibroblast

Fibroblasts are found in connective tissue. This is the tissue that holds together the different structures of the body e.g. tendons and cartilage. Fibroblasts produce and maintain collagen - the main component of connective tissue.

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Fingolimod

Fingolimod (pronounced: fin-goe-lee-mod) is a licensed tablet taken daily for second-line treatment of rapidly evolving severe MS. It is available on the NHS and its brand name is Gilenya.

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Functional Electrical Stimulation

Functional Electrical Stimulation (FES) is a non-invasive device that can help some people with MS to walk by using electrical current to stimulate nerves and move parts of the body.

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Functional magnetic resonance imaging

fMRI is an imaging technique that can be used to detect brain activity. The technique measures blood flow to the brain. Highly active brain regions are detected because they require an increased supply of blood.

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Gamma aminobutyric acid

GABA is a neurotransmitter. It is a chemical signal that transmits information from one nerve to another.

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Gene

DNA is the genetic material found in every cell. A gene is a stretch of DNA that includes all the information about how and when to make a specific protein. A cell will 'read' a particular gene every time it needs to make that 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, e.g. 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.

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Gilenya

Gilenya is a licensed tablet taken daily for second-line treatment of rapidly evolving severe MS. It is available on the NHS and its scientific name is fingolimod.

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Glatiramer acetate

Glatiramer acetate is a licensed first-line treatment for people with relapsing remitting MS, administered by daily injections. It is available on the NHS across the UK and its brand name is Copaxone.

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Glial Cells

Glial cells are the maintenance cells in the central nervous system. Their job is to look after nerve cells by providing structural support, feeding them essential factors and producing and repairing the myelin sheath. There are three main types: oligodendrocytes, astrocytes and microglial cells.

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Glucocorticoids

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

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Glutamate

Glutamate is a neurotransmitter. It is a chemical signal that transmits information from one nerve to another.

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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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Haematopoiesis

Haematopoiesis is the process of producing new red and white blood cells. It takes place in the bone marrow.

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Hepatitis B vaccination

Some anecdotal observations in the 1990s suggested that the vaccine for Hepatitis B increased the risk of demyelination and additional relapses in people already diagnosed with multiple sclerosis. Subsequent investigations concluded that there was no link between administration of the vaccine and the onset of MS.

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Heredity

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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Herpes virus

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

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Histology

Histology is the study of tissue. It involves examining cells and tissues under the microscope.

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Hookworms

Hookworms are parasitic worms that infect the gut of other organisms and live off of nutrients moving through the gut. Researchers have noticed that as hookworm infections have been eradicated in developing countries, the incidence of autoimmune conditions has increased. This has led to research showing that hookworm infections can dampen down the immune system, suggesting that they may be effective at treating a number of autoimmune conditions. A phase II 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

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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Housing benefit

You may get Housing Benefit if you pay rent and your income and capital (savings and investments) are below a certain level. You could qualify if you are out of work, or in work and earning a wage.

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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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Human Leukocyte Antigen

The group of genes that are involved in immune system function. Geneticists have found that variation in some of the HLA genes are linked with an increased risk of developing MS.

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Hyperbaric oxygen therapy

A treatment where a patient breathes in pure oxygen while under increased air pressure. Hyperbaric oxygen increases the oxygen content in the blood and in different body tissues. It is an accepted therapy for some medical conditions, including burns, decompression sickness, severe infections, radiation-induced tissue injury, and carbon monoxide poisoning. Anecdotally, people with MS may have found relief from some symptoms, but scientific studies fail to reproduce these claims.

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Hypersomnia

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

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Hypothesis

A hypothesis is a testable theory about how something works. Trial and error is used by researchers to confirm or disprove their theory.

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Immune cells

Cells that are responsible for detection and combat of infections. In people with MS, immune cells lose their ability to distinguish suspicious foreign cells from normal healthy cells. This causes the body's immune system to activate and attack myelin, which protects nerve cells, when it shouldn't.

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Immune response

The immune response refers to the activity of the immune system following infection. A complex string of events takes place immediately after and in the days and weeks following an infection: Immune cells are recruited to the site of infection and signal a response. Some types of immune cell can kill infectious cells directly (known as innate immunity). Other types of immune cells can adapt to the infection and produce specific molecules that can kill the infectious cells. The latter of these responses (known as the adaptive immune response) can mount a quick response if that infection occurs in the future. This is what gives people immunity to certain infections.

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Immune system

The immune system is made up of organs (e.g. lymph glands), specialised cells (white blood cells) and signalling molecules (e.g. cytokines). The immune system protects us from infections by recognising and neutralising any foreign matter in the body. It will 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 e.g. 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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Immunoglobulin

Immunoglobulins are the proteins that form antibodies. Because antibodies regulate the immune system response, immunoglobulins are being researched as a treatment for 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 is a weekly payment for people under state pension age who are incapable of work because of illness or disability. Since 27 October 2008 it has not been possible to make a new claim. New claimants may be able to receive Employment and Support Allowance.

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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

Income-based Jobseeker's Allowance is based on your income and savings. You may get this if you have not paid enough national insurance contributions (or you've only paid contributions for self-employment) and you're on a low income.

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Infection

MS symptoms sometimes feel worse if your body temperature rises because of an infection – this is sometimes known as a ‘pseudo-relapse’ because it has the appearance of a relapse but has a different cause. 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 of 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

Administering a drug or other substance as part of a liquid solution injected directly into a vein (usually in the arm) over a period of time.

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Integrin

Integrins are a family of adhesion molecules found on the surface of cells. In a similar way to velcro, they bind to other complementary molecules (integrin receptors) on the cell surface to help cells 'stick' together.

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Intercellular adhesion molecule-1

When a tissue is inflamed, ICAM-1 is an adhesion molecule found on the surface of the cells lining the blood vessels. ICAM-1 is involved in recruiting immune cells to the site of inflammation.

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Interleukins

Interleukins are a group of signalling molecules that act as chemical messengers between cells. They are important in regulating the immune system.

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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 sometimes used to manage relapses in MS if steroids cannot be taken. It is also being tested to reduce the number of relapses in people with relapsing forms of MS. Current data is inconclusive as to whether IVIg is an effective therapy for MS and therefore it is not widely used as a disease modifying therapy.

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Jobseeker's Allowance

Jobseeker's Allowance is the main benefit for people of working age who are out of work or work less than 16 hours a week on average. If you're eligible, it is paid while you're looking for work.

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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 the accumulation of sodium molecules from entering cells. It is currently in phase II clinical trials for secondary progressive MS to examine its neuroprotective effects.

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Laquinimod

Laquinimod is a tablet taken daily to treat relapsing remitting MS, but is not yet licensed. Its brand name is Nerventra.

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Lasting Power of Attorney

A Lasting Powers of Attorney is a legal document that allows you to choose someone you trust to look after your affairs and make decisions on your behalf if necessary. LPAs now cover health care and consent to medical treatment, as well as decisions about property and financial affairs. They replace Enduring Powers of Attorney (EPAs).

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LDN

Naltrexone is licensed in the UK to help treat people who are addicted to opiates, such as heroin. Advocates of its use in MS suggest it should be given at a much lower dose than usual (Lower Dose Naltrexone - LDN) for the treatment of MS (10-50 times lower dose). Some research suggests that when naltrexone is given at low doses it triggers a prolonged up-regulation of endorphins. This increase may have an anti-inflammatory effect which could be beneficial in the treatment of MS. It has also been hypothesised that LDN may be able to reduce injury to the nervous system by decreasing the harmful effects of two types of chemicals called 'free radicals' and 'excitotoxins' (Med Hypotheses 2005; 64(4):721-4).

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Lemtrada

Lemtrada is a licensed first-line annual infusion treatment for people with active relapsing remitting MS. Its scientific name is alemtuzumab and it has also been known as Campath.

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Lesion

In MS, lesions (or plaques) are patches in the central nervous system where inflammation has resulted in the loss of myelin. Some lesions will spontaneously repair themselves and disappear. Others become permanent areas of visible scarring.

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Leucocyte

Leucocyte is another name for white blood cells. These cells form part of the immune system.

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Licensed treatment

A treatment that has been deemed safe and effective for use in people with a specific condition or symptom by the relevant regulators. In the UK the Medicines and Healthcare Products Regulatory Agency decides what treatments can been licensed.

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Lingo-1

Lingo-1 is a potential therapy for MS that is currently in phase I clinical trials to test for safety. It is an antibody designed to regenerate myelin. A small study in the Netherlands has enrolled 64 healthy volunteers to test that the treatment is safe and is expected to finish in 2011.

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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. Advocates of its use in MS suggest it should be given at a much lower dose than usual (Lower Dose Naltrexone - LDN) for the treatment of MS (10-50 times lower dose). Some research suggests that when naltrexone is given at low doses it triggers a prolonged up-regulation of endorphins. This increase may have an anti-inflammatory effect which could be beneficial in the treatment of MS. It has also been hypothesised that LDN may be able to reduce injury to the nervous system by decreasing the harmful effects of two types of chemicals called ?free radicals? and ?excitotoxins? (Med Hypotheses 2005; 64(4):721-4).

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Lumbar puncture

A lumbar puncture is a procedure used to collect a sample of the fluid that surrounds the central nervous system (cerebrospinal fluid). This fluid is analysed to diagnose MS.

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Lymph

Lymph is the fluid that flows through the lymphatic system. It transports white blood cells around the body to carry out an immune response wherever they are needed. The lymphatic system connects up with the blood vessels in the body. Together blood and lymph keep fluid circulating through the body.

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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 preparation for an immune response. 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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Lymphocyte

Lymphocyte is another name for white blood cells. These cells form part of the immune system.

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Macrophage

Macrophages are large white blood cells that take in and digest any debris - including dead, injured or infected cells as well as bacteria. They are thought to play a role in inflammation in the brain during attacks in MS.

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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

MT is a new form 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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Major histocompatability complex

MHC proteins are found on the surface of all types of cells. They act as a signal to the immune system to confirm that the cell is part of the body and shouldn't be attacked.

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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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Matrix metallo-proteinases

MMPs are found throughout the body. They are responsible for breaking down and reforming body tissue and getting rid of waste material. Researchers think that MMPs may be important in MS. They may be part of the mechanism that controls whether immune cells leave the bloodstream to enter the brain.

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MBP8298

Dirucotide (MBP 8298) is a drug being tested for use in progressive forms of MS. Phase III clinical trials of the drug were recently cancelled because the drug was not demonstrating effectiveness in trial participants.

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McDonald Criteria

The McDonald criteria are the criteria required for a diagnosis. Although the McDonald criteria say it is possible to clinically diagnose MS without any tests, they recommend that investigations are carried out so test results can provide further evidence of MS. Diagnosis of relapsing remitting MS rests on: two relapses, separated by more than 30 days, OR one relapse and an MRI scan three months later that shows new lesions. To determine if a person has secondary progressive MS, they must have: had relapses in the past, shown a steady increase in disability for at least six months, whether or not they continue to have relapses. Primary progressive MS is diagnosed if there have been no previous relapses and if there is: a progression of disability over at least a year, an MRI scan that shows lesions consistent with MS, evidence of MS detected by examining the spinal fluid collected during a lumbar puncture (this is the only situation where a lumbar puncture is needed to diagnose MS).

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Mental Capacity Act

The Mental Capacity Act 2005. It is a basic principle of the law on consent that a mentally competent adult can refuse treatment for a good reason, a bad reason or for no reason at all. There are five key principles: Every adult has the right to make his or her own decisions and must be assumed to have capacity to do so unless it is proved otherwise, A person must be given all practicable help before anyone treats them as not being able to make their own decisions, Individuals must retain the right to make what might be seen as an unwise or eccentric decision, Anything done on behalf of a person who lacks capacity must be done in their best interests, Anything done for or on behalf of a person who lacks capacity should be the least restrictive of their basic rights and freedoms, The act provides a legal framework to protect patients with impaired capacity and also protects the carers who make decisions about their care and treatment.

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Methotrexate

Methotrexate is a chemotherapy drug that inhibits the production and maintenance of essential molecules in the cell. It has been shown to inhibit immune cell activation in MS, which prevents the cells from attacking myelin. It?s been shown to reduce the relapse rate in people with relapsing remitting MS.

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Methylprednisolone

Methylprednisolone is a type of corticosteriod which is often used to reduce the lenghth of time and severity of relapses in people with MS. It is currently being tested as a potential disease modifying therapy in secondary progressive MS.

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Minocycline

is an oral antibiotic used to treat acne. It?s being developed for use in people with MS.

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Mitoxantrone

Mitoxantrone is a drug which acts to damage rapidly dividing cells, such as those in the immune system. It is usually used, in combination with other drugs, as a type of chemotherapy to treat certain types of cancer. In recent years it has been used to treat some forms of MS. It is normally used in very active relapsing remitting or secondary progressive MS, where relapses are still a significant feature. During the period of treatment, mitoxantrone appears to work in MS by suppressing the immune system and giving the nervous system a chance to recover from recent relapses.

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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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Monoclonal antibody

A highly specific, laboratory-produced antibody (molecules normally made by the immune system that typically combat infections) that can locate and bind to specific targets wherever they are in the body. Several monoclonal antibodies are being tested or used as treatments for MS.

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Motability scheme

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

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MRI

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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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

An MS nurse (also called and MS specialist nurse) has specialist training and experience in working with people with MS. Some are based in hospitals, some work in clinics in the community. Some MS nurses can make home visits. For many people, the MS nurse is the first point of contact for managing their MS, and a trusted voice at the end of the phone line to answer health questions like - "Is this a relapse I am having? How can I manage this new symptom? Can I speak to someone about physiotherapy?" If there is not an MS nurse in your area, a neurological nurse or district nurse might play a similar role for you.

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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 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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Murine

Murine is the adjective that refers to mice. For example, murine diseases are diseases that affect mice.

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Musculoskeletal pain

Musculoskeletal pain is pain in muscles, joints and ligaments that can come from living with the stresses and strains of life including the effects of MS. For example, difficulties with balance, fatigue or muscle weakness could lead to problems with posture, putting a strain on joints, ligaments or other muscles.

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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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Myelin basic protein

Myelin basic protein (MBP) is the major protein found in myelin. Researchers think that MBP is the main target of the immune system attack in MS.

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Myelination

Myelination is the process of producing myelin. Remyelination refers to the process of reforming myelin after it has been damaged by disease or injury.

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Natalizumab

Natalizumab (pronounced: nay-tal-iz-oo-mab) is a licensed monthly infusion used as a seond-line treatment for highly active forms of relapsing remitting MS. It is available on the NHS and its brand name is Tysabri.

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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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Natural killer cells

Natural killer cells make up 15% of white blood cells. They play a part in carrying out one part of the immune response, recognising and destroying tumour cells or cells infected with a virus.

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Nerve cells

Nerve cells are cells in the nervous system (brain and spinal cord) 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.

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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 alongside Primary Care Trusts and County Councils 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 involve the central nervous system (the brain, spinal cord and 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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Neuron

The human body is made up of trillions of cells. Cells of the nervous system, called nerve cells or neurons, are specialised to carry "messages" through an electrochemical process. The human brain has approximately 100 billion neurons.

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Neurophysiotherapy
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

Drugs that are injected cause the immune system to react to the foreign agent. In response to the injection of protein-based products such as beta interferon or glatiramer acetate, the immune system typically reacts by producing antibodies.

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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 Clinical Guideline for MS

The National Institute for Care and Excellence (NICE) Clinical Guideline for MS provides evidence-based recommendations on managing all aspects of MS. Written in 2003 and due to be updated in 2014, it states how people can be diagnosed, what information and support they should receive and what treatments are advisable and available. It offers a blueprint for service providers and commissioners on the best way to organise healthcare services.

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Nutritionist

A nutritionist will advise you on how the nutrients in your diet relate to your health and wellbeing. A nutritionist can help you to get the best out of food, making a significant contribution to your quality of life.

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Occupational therapist

Occupational therapists help people who have difficulties with practical everyday tasks to enable you 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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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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Oligoclonal bands

A group of protiens 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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Oligodendrocyte precursor cells

OPCs are cells that mature and develop into oligodendrocytes. Researchers are trying to find out if these cells could be used to repair the damage to myelin caused by MS.

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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

In a clinical trial, both the trial investigator and the participant know which treatment the participant is receiving.

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Optic neuritis

Inflammation of the optic nerve that has the potential to cause partial or complete blindness. It is caused by the deconstruction of the myelin sheath covering the optic nerve. It can be painful and come and go.

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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 is the active holistic care of people with advanced, progressive conditions. It includes management of pain and other symptoms and provision of psychological, social and spiritual support with the aim of achieving the best quality of life for the person concerned and their family. Because MS is unpredictable, it's hard to say whether people with MS will need palliative care at certain points in their life or not. The MS Society believes that high quality, person-centred palliative care should therefore be made available to people with MS whenever it?s needed, rather than being confined to the last stages of life.

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PALS

If you are not happy with any NHS services, or feel you are not getting the treatments you need, try to resolve the problem using the Patient Advice and Liaison Service, known as PALS. They can answer questions and concerns of a non-medical kind, as well as offer confidential advice on how to deal with any problems you are experiencing. The telephone number for PALS is available from your GP's practice or hospital switchboard. If you cannot resolve the problem with the help of PALS, you may wish to make a formal complaint. There is a standard NHS complaints process which PALS can help you with. You should try to complain within six months of the event concerned. To submit your complaint, contact the complaints manager at the hospital or clinic by telephone or in writing. They should respond within two weeks.

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Parasite infection

Hookworms are parasitic worms that infect the gut of other organisms and live off of nutrients moving through the gut. Researchers have noticed that as hookworm infections have been eradicated in developing countries, the incidence of autoimmune conditions has increased. This has led to research showing that hookworm infections can dampen down the immune system, suggesting that they may be effective at treating a number of autoimmune conditions. A phase II 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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Pathogen

Pathogen is the collective name for viruses, bacteria and fungi and any other organisms that cause disease.

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Pathogenesis

Pathogenesis refers to the processes that cause a disease or condition and allows that disease or condition to develop.

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Pathology

Pathology is the study of diseases.

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Peptide

A peptide is a small protein. Proteins are made up amino acids. A peptide is made up of only a few amino acids, whereas a protein may be made of several hundred.

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Percutaneous endoscopic gastrostomy

If someone is experiencing severe swallowing difficulties a PEG (percutaneous endoscopic gastrostomy) allows nourishing liquid food to go directly through a tube into the stomach and 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

If you are eligible for social care services, you may be offered a Personal Budget. With a personal budget, you can choose to: Receive all your services from the local authority Buy all your services using direct payments or a combination of both. You can manage your care yourself, or the local authority could manage it on your behalf - or it could be managed by a third party.

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Personal health budgets

Personal Health Budgets are designed to give patients more choice over the health services and care they receive. They involve a Personal Care Plan which are essentially an agreement between the primary care trust and the individual that sets out the person’s health needs, the amount of money available to meet those needs and how this money will be spent.

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Personal Independence Payment

Personal Independence Payment (PIP) is a benefit you may be able to claim if you need help doing everyday tasks or find it difficult to get around outside your home. It is replacing Disability Living Allowance (DLA) for people of working age. If you are over 65, you can claim Attendance Allowance instead.

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Personalisation

Personalisation refers to a new focus in social care policy which emphasises supporting people to have choice and control over the care services they use. This is also sometimes known as 'self-directed support'. Increasingly, anyone who is eligible for help from social care services will receive a personal budget. To find out what's available in your area, speak to your social care services department.

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Pharmaceutical companies

Where we believe it's in the best interests of people with MS, we work in an open, transparent and impartial way with the pharmaceutical industry

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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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Phase II 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 III 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 III 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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Physiotherapist

A physiotherapist uses physical exercise or massage to treat a condition. The benefits of physiotherapy in MS are now clear and several studies have suggested that excercise can benefit physical movement and decrease fatigue.

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Physiotherapy

Physiotherapy is the use of physical excercise or massage to treat a condition. The benefits of physiotherapy in MS are now clear and several studies have suggested that excercise can benefit physical movement and decrease fatigue. A clinical trial being carried out in Ireland aims to assess the benefits of different excercise interventions for people with MS.

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PIP

Personal Independence Payment, or PIP, is the new benefit to help working age disabled people with the costs of living with a disability. It will replace Disability Living Allowance in 2013-14.

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Placebo

A placebo is a control substance known to cause no effect (a dummy treatment) that is given to people taking part in a clinical trial. It allows researchers to test for the 'placebo effect'. This is a psychological response where people feel better even though the substance 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

In MS, plaque is an alternative name for a lesion.

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PML

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 Tysabri (natalizumab). The risk of developing PML is about one in 1000 for people who are taking Tysabri for more than 12 months. The risk increases after two years of therapy. Patients with MS should be informed about the risks of Tysabri, 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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Prescription pre-payment certificate

If you are having to pay lots of money for prescriptions on a regular basis, and you live in England, you might be able to use a Pre-Payment Certificate (PPC) to help spread out the costs. This allows you to pay a set amount of money for your prescriptions which will cover all your prescription costs for a certain period. You can apply for a PPC by: Using the online NHS form, Calling 0845 850 0030, By completing form FP95, available at pharmacies and doctors' surgeries

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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

A course of MS characterised by progression of disability from onset of the condition, without plateaus or recovery periods (remissions).

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Progressive MS

People with progressive forms of MS experience a steady decline in disability over time rather than relapses followed by recovery. There are two types of progressive MS; secondary progressive MS and primary progressive MS.

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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 1000 for people who taking natalizumab for more than 12 months. The risk increases after two 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 refers to a process in clinical trials in which participants of the trial 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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Receptors

Receptors are chemicals which bind selectively to other chemicals (called ligands) in a similar way to a lock and key. The receptor is the 'lock' that can only be opened by a specific ligand 'key'. Receptors are usually found on the surface of cells. When a ligand binds to its receptor it often triggers a response in the 'activated' cell.

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Rehabilitation

Rehabilitation brings together nursing, physiotherapy, occupational therapy and other disciplines in a team approach, combining their different expertise. Rehabilitation can help all people with MS at every stage of their condition. It can help minimise some of the effects of MS, helping you retain your independence, make the most of your abilities and gain relief from distressing symptoms.

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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.

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Relapsing remitting MS

A type of MS characterised by clearly defined flare-ups (periods when people with MS experience new symptoms or when their old symptoms reoccur) followed by partial or complete recovery periods (remissions) free of disability progression. About 85 per cent of people with MS are diagnosed with relapsing remitting MS at time of diagnosis.

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Remission

The symptoms of MS can come and go. After a time of experiencing symptoms, a person with MS can partially or completely recover. This recovery period is known as remission but is not permanent.

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Remyelination

Remyelination is the replacement of lost or damaged myelin. In MS, the body's failure to repair myelin and replace lost nerves cells is the cause of increasing levels of disability. Finding ways to encourage remyelination is a therefore a major goal for MS research.

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Ribonucleic acid

RNA is a form of genetic material. It is produced when a gene is activated inside a cell. The RNA instructs the cell as to what proteins it needs to make.

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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 drugs glatiramer acetate and beta-interferons available on the NHS 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 (pronounced: ri-TUK-si-mab) is a potential treatment for MS. It is what is known as a monoclonal antibody and has been used to treat certain types of blood cancer (leukaemia and lymphomas) for several years.

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Sativex

Sativex (pronounced: sat-iv-ex) is a cannabis-based oral spray licensed for the treatment of spasticity in people with MS.

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SB-683699

SB-683699 is an oral medication that helps to reduce the number of white blood cells entering the brain. It is currently in Phase II trials for relapsing remitting MS.

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Schwann cells

Schwann cells are the type of cell that form myelin in the peripheral nervous system.

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Secondary progressive MS

This is a type of MS that follows on from relapsing remitting MS in many cases. It is characterised by a progression of disability rather than by relapses followed by recovery. Some people with secondary progressive MS may experience relapses, but these are characterised by incomplete recovery.

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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 Prozac 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 complications experienced by people undergoing treatments. All treatments can have side effects. With all treatments, it can be a case of weighing the benefits against 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, but the oral pill has also been studied for its ability to decrease the number of lesions and reduce inflammation in people with MS. A phase II clinical trial of simvastatin in people with secondary progressive MS reported that the drug might slow disability progression in October 2012 . It is also being trialled as a combination therapy with beta interferon and copaxone in people with relapsing remitting MS.

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Smoking

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 is the collective name given to muscle spasms and stiffness. Muscles in the body come in pairs that pull in opposite directions. Usually when one contracts, the other is stretched. With spasticity both muscles are contracted at the same time. These involuntary contractions can be painful and debilitating.

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Speech and language therapist

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

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Statutory sick pay

If you're an employee and unable to work because you're ill you may be able to get Statutory Sick Pay. It is paid by your employer and can be paid for up to 28 weeks. Find out who can get Statutory Sick Pay and how it's paid.

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Stem cell therapy

Stem cells are cells that can both reproduce themselves and develop into many different cell types. 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 of the cells in our body have specialised to have a specific function. Stem cells are different because they are early precursor cells which can reproduce themselves, and they have the potential to specialise and become other cells, like cells in muscle, blood or the brain.

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Steroids

Steroids are natural hormones found in the body. They include the sex hormones, oestrogen and testosterone, and the corticosteroids that affect the metabolism and the immune system. Synthetic steroids are used to treat relapses.

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Supportive listening

Supportive listening is a treatment where people are helped towards finding solutions by talking through experiences, thoughts and feelings in a non-judgmental listening environment.

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Symptom Relief Research Initiative

MS can cause a wide variety of symptoms. To date, symptom relief is an area of research which has been under-explored. The MS Society has begun a new initiative to raise money to fund research into symptom relief. The aim is to raise

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Synapse

The synapse is the connection between two nerve cells or between a nerve cell and a muscle cell. Nerve signals are transmitted across the synapse by the release of chemical signals called neurotransmitters.

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T-cell

T-cells are a type of white blood cell and form part of the immune system. There are many different types of T-cells. Some activate the immune response by signalling to other cells. Some directly attach to infected cells and destroy them. Others work to dampen down the immune response. Overactive T-cells are thought to be responsible for much of the damage to myelin seen in MS.

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T-cell vaccination

T-cell vaccination is currently being tested in phase III clinical trials for use in relapsing remitting MS. T-cell vaccination works by eliminating specific T cells that recognise myelin in the brain. These T-cells that specifically recognise myelin are thought to cause damage to myelin that occurs in MS. Preliminary results from some studies have suggested that T-cell vaccination may reduce the number of relapses experienced by people with relapsing remitting MS.

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TENS

Transcutaneous electrical nerve stimulation (TENS) is a type of neuropathic pain management system that uses patches placed on the surface on the skin to pass an electrical current through to specific nerves. TENS can help in the management of pain in the short-term, but does not get rid of pain in the long-term.

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Teriflunomide

Teriflunomide (pronounced: ter-i-flun-o-mide) is a licensed tablet taken once a day as a first-line treatment for people with relapsing remitting MS. Its brand name is Aubagio.

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The Cambridge Centre for Myelin Repair

This MS Society funded programme grant, launched at the beginning of 2005, 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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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. It is a chronic disorder of the trigeminal nerve (or 5th cranial nerve).

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Tumour necrosis factor

TNF is a signalling molecule in the immune system. Because it is part of the mechanism causing inflammation, researchers are trying to find out if this molecule is important in MS.

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Tysabri

Tysabri is a licensed monthly infusion used used as a seond-line treatment for highly active forms of relapsing remitting MS. It is available on the NHS and its scientific name is natalizumab.

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Uhthoff's phenomenon

Many people with MS - though not all - are sensitive to heat. Illness or infection, hot weather and exercise can all raise the body's temperature, which can make existing MS symptoms feel temporarily worse or bring about fatigue, weakness or vision problems. This is known as 'Uhthoff's phenomenon' and it probably occurs in MS because heat makes it harder for messages to pass between the brain and the rest of the body. Uhthoff symptoms fade away after the body cools down again and these temporary changes need not be a reason to avoid exercise.

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Unlicensed treatment

A treatment that has not been licensed by the relevant regulatory authority.

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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

Urinary urgency describes an urgent need to pass urine. It is a common symptom of MS, caused by damage to the nerves controlling the bladder muscles. It can lead to incontinence.

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Vaccination

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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Virus

A virus is a tiny microbe, much smaller than bacteria. Viruses cannot reproduce themselves and have to infect another cell to be able to do so. Viruses therefore enter cells in the body to cause diseases such as flu, AIDS 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 cell

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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