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Multiple Sclerosis

Medline NLM definition: A disease in which there are foci of demyelination of various sizes throughout the white matter of the central nervous system, sometimes extending into the grey matter. Typically, the symptoms of lesions of the white matter are weakness, incoordination, paresthesias, speech disturbances, and visual complaints. The course of the disease is usually prolonged, so that the term multiple also refers to remissions and relapses that occur over a period of many years. The etiology is unknown. (Dorland, 28th ed)

Multiple Sclerosis service - the MS service based at the National Hospital for Neurology and Neurosurgery (NHNN), in Queen Square in central London, is an established service that has worked closely with thousands of people who live with MS. It is closely linked with University College London's Institute of Neurology (ION) major research programmes, looking at new treatments, better ways of managing MS and improving understanding of the condition. Together they form the largest single-site centre for neurology and neurosurgery in the UK. They are also internationally recognised for being at the leading edge of clinical care, with a team committed to delivering the best possible service to people with MS. They aim to provide specialist services, share information on how to manage symptoms, offer education sessions to discuss lifestyle issues, medication options and rehabilitation services. They run one-to-one sessions at the time of diagnosis, group classes for newly diagnosed patients, symptom management tips, medication management and education regarding treatments, information about coping with MS, as well as a range of specialist clinics.

Multiple sclerosis: information from the NHS website

Multiple Sclerosis: information from Patient UK website

Multiple Sclerosis: factsheet from NINDS, the National Institute of Neurological Disorders and Stroke information (US site)

Multiple Sclerosis: information from NORD, the National Organization for Rare Disorders (US site)

PubMed Medline search on Multiple Sclerosis

Support Groups

MS Society
A community of people living with MS, but also researchers and campaigners. Site includes information on diagnosis, living with MS, and information for carers. There is also information on research funded by the society. Gives information and advice to people with MS and provides services to anyone affected by MS.  Includes information on regional groups.

MS Trust
Set up in 1993 to provide “trusted information”, site includes information on MS and on living with the condition. Site has the Information Standard. The trust funds research in disease management. Provides information to people with MS, their carers and health professionals. Has set up the MS Nurse Forum to provide a programme of education, information and communication for nurses. Produces regular newsletter and has a library and information service.

Multiple Sclerosis International Federation
International research, supporting MS organisations, advocating for and raising awareness of MS, and communicating MS information.

MS-UK
Small but national organisation, which has the PQASSO quality mark (a National Council for Voluntary Organisations scheme – see here for more information). Site has information about MS, and details of helpline and counselling services.

National Multiple Sclerosis Society (US site)
This comprehensive US website has information on aetiology, diagnosis, treatment, prognosis etc of MS. It also has a newsdesk and advocacy information as well as links to local US chapters. The site contains information for medical professionals, people with MS and carers.

Brain and Spine Foundation
Information on living with a neurological condition and on diagnosis. There are publications and resources. The useful glossary of neurological conditions (under 'Information and support') includes links to some other organisations as well as to Brain and Spine Foundation information.

Healthtalk: nerves and brain
Personal experiences of people living with various neurological conditions.

Neurological Alliance
Collective voice for 80 organisations, including stroke and brain injury. Organisations are listed at https://www.neural.org.uk/our-members/, a good place to start if looking for information on those conditions. Site also includes information about living with a neurological condition, a glossary, and information about onset and diagnosis as well as a small set of real life stories.

NHS Inform: brain, nerves and spinal cord 
NHS inform is Scotland's national health information service, with the aim of providing the people in Scotland with accurate and relevant information to help them make informed decisions about their own health and the health of the people they care for.

Overcoming Multiple Sclerosis
UK charity Overcoming MS (OMS) educates, supports and empowers people with MS in evidence-based lifestyle and medication choices that improve health outcomes.

 

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