Information Brochure for patients newly diagnosed with Multiple Sclerosis

Get support and take control of your Multiple Sclerosis (MS)

Information for patients with MS and their families

What is Multiple Sclerosis (MS)?

MS is a chronic disease of the central nervous system (brain and spinal cord) that controls the actions and activities of your body.

The name of MS comes from the multiple scars (sclerosis) which develop and damage the nerves in the brain and in the spinal cord.

Need to know more? Visit: www.patient.co.uk health multiple!sclerosis

ow does MS de!elop?

The nature and severity of the disease is specific to each person and is influenced by the si"e of the lesions in the nerves and its progress over time.

The nerves fibres in your brain and spinal cord are surrounded by a substance called myelin that protects them and smoothly carries the messages between the brain and the body.

#hen the myelin is damaged$ the signals are disrupted and this causes a wide range of symptoms in your body. %owever$ the myelin can also repair itself and the nerves become functional again.

ow MS pro"resses?

MS is an unpredictable condition and its progression$ symptoms and treatment vary considerably among individuals.

&lthough appro'imatively ())$))) people in *+ suffer from this chronic disease$ which affects multiple aspects of life$ remember that MS is not a life!threatening condition.

The most common MS types are, #$ %elapsin" remittin" (about -) . of patients),

It follows a pattern of relapses (sudden worsening of symptoms) and remissions (partial or complete recovery). /elapses last for days or months and usually occur at every two years.

&$ Secondary pro"ressi!e: &bout 0). of people with the relapsing remitting develops this MS type$ after nearly ten years. The symptoms worsen progressively and the periods of remissions decrease or disappear completely. '$ (rimary (ro"ressi!e: (()!(0. of patients)

Symptoms decline slowly and gradually from their first occurrence and there are minor or no remissions.

What causes MS?

MS is caused when the immune system attacks the nerves of your brain and spinal cord. This is why MS is also considered an autoimmune disease.

The causes that trigger the immune system to attack the nerves are not known but research suggests that a combination of environmental and genetic factors may contribute to this reaction.

The cells of the immune system usually target viruses and bacteria in your body. In MS$ they mistakenly attack the myelin of healthy nerves.

1erves are damaged and the signals they carry around the body are disrupted$ and this produces your symptoms.

What are the symptoms of MS?

2our symptoms might occur in various areas of your body$ but there is little probability you develop all of them.

(ossi)le physiolo"ical and psycholo"ical symptoms:

Visual difficulties: blurred or double vision or functional blindness$ usually in one eye

Muscle spasms and spasticity: stiffness$ tight and painful contractions

Ner!e pain: pins and needle$ burning$ tightness$ numbness$ itching sensations in e'tremities or anywhere else in the body

Musculoskeletal pain: in the hips and lower )ack$ muscles* tendons and li"aments

+ati"ue: sudden overwhelming tiredness ,motional pro)lems: depression$ an'iety$ anger and mood change

-o"niti!e difficulties: with thought$ attention$ memory and speech

Mo)ility pro)lems: balance and coordination difficulties$ tremor$ di""iness

.ladder or )owel dysfunction: dribbling$ constipation and incontinence.

/ealin" with the new dia"nosis

3iving with MS can be very challenging. /emember that although you might e'perience highs and lows$ and this is very common$ many people live long and en4oyable lives despite this condition. The news of being diagnosed with MS may trigger different emotions and reactions in you and your family members and friends. 5nce you get more information about MS

and come to term with your diagnosis$ you are more confident to speak about it. Similarly$ when people become aware about what is like to live with MS$ they are more prepared to provide support if or when asked.

When you are ready to speak a)out your dia"nosis with your dear ones* it may help to:
6o not take personally their possible negative reactions Make a list of what information you want to share with them 7'plain them to treat you with the same consideration as before 7ncourage them to read about your condition.

Need to know more? Visit: www.mssociety.org.uk ms!support emotional!support living!with!ms telling!your! family

Which treatments are a!aila)le for MS?

&lthough MS is not currently a curable disease$ there are a wide range of treatment options you can benefit from to ease the symptoms and$ eventually$ to slow the progression of the disease. They are available in hospitals$ outpatient clinics and community settings and are tailored to meet your needs.

(harmacolo"ical treatment
treat relapses and alleviate the symptoms

Supporti!e therapies

8sychological therapies Multidisciplinary and vocational rehabilitation 9omplementary therapies,

diet$ refle'ology$ massage$ t:ai chi$yoga$ neural therapy and many others.

6espite of limited medical evidence on the efficacy of complementary therapies$ many people with MS find them useful to maintain or improve their health and general well!being. If you want to try them$ it is recommended to ask advice from your health care team.

Need to know more? Visit: www.mssociety.org.uk what!is!ms treatments!and!therapies alternative!therapies

Where to "et treatment and support?

Specialist support
6epending on the comple'ity of your condition$ your symptoms and other MS related needs are typically addressed by one or many health professionals working together.

This is your neurological rehabilitation who may include,

Neurolo"ists: give diagnosis$ prescribe medication and coordinate the health care team (hysiotherapy

MS specialist nurses: are the first point of contact with the rehabilitation team; they advice on how to maintain a healthy lifestyle and help you self!manage your condition (hysiotherapists: provide special e'ercise programmes to improve the <uality of movement$ mobility$ balance and coordination 0ccupational therapists: teach how to perform and pace occupational and daily tasks independently and confidently Speech and lan"ua"e therapists: address difficulties in speech and communication Social workers, help to access services and resources available in your community and from local authorities -linical psycholo"ists: provide support for emotional difficulties /ieticians: advice on difficulties with eating and how to maintain a balanced diet Specialist continence nurses: help to manage bladder and bowls problems

 (ain mana"ement specialists: help with pain relief.

Support "roups
What do they in!ol!e? 2ou can meet people with a similar condition$ share e'periences and get emotional and moral support for each other.

.enefits:

6iscuss topics of concern and get more information 7'plore and e'press your emotions =orm social and emotional bonds with others 3earn coping skills.

+or a list of a!aila)le support "roups* !isit: www.mssociety.org.uk ms!support support!groups www.mstrust.org.uk interactive links www.patient.co.uk health multiple!sclerosis support

Self1support

%ave a nutritional and healthy diet Maintain an active social support network Build!up your personalised e'ercise programme Monitor your symptoms and treatment effects.

Need to know more? Visit: www.mstrust.org.uk information looking!after!yourself

0ther useful contacts

Multiple Sclerosis %esource -entre 9ounselling and &dvice line, 2322 43' 25#3 www.ms!uk.org .rain and Spine +oundation Talk to a nurse, 2323 323 #222 www.brainandspine.org.uk ,6pert (atient (ro"rammes 2322 733 5552 www.e'pertpatients.co.uk

elp with this )rochure

If you would like this information in, another language Braille British sign language large print an audio format$ please contact us on 247& '847 &77$

%eferences

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&bout MS$ /etrived March ($ ?)(@ from http, www.mstrust.org.uk information Brain and Spine =oundation* www.brainandspine.org.uk 7'pert 8atient 8rogrammes* www.e'pertpatients.co.uk Multiple Sclerosis symptoms. /etrived =ebruary ?0$ ?)(@ from http, www.nhs.uk 9onditions Multiple!sclerosis 8ages Symptoms.asp'

Multiple Sclerosis. /etrived =ebruary ?0$ ?)(@ from http, www.brainandspine.org.uk multiple!sclerosis

Multiple Sclerosis. /etrived =ebruary ?A$ ?)(@ from http, www.patient.co.uk health multiple!sclerosis

Multiple Sclerosis. /etrived =ebruary ?-$ ?)(@ from http, prodigy.clarity.co.uk patientBinformationBleaflet multipleBsclerosis

Multiple sclerosis (9C-), Management of multiple sclerosis in primary and secondary care$ 9linical Cuidelines (?))@)$ /etrived March ($ ?)(@ from http, publications.nice.org.uk multiple!sclerosis!cgMultiple Sclerosis /esource 9entre* www.ms!uk.org

Meet the Multiple Sclerosis Team$ /etrived ?- =ebruary$ ?)(@$ from http, www.uhb.nhs.uk ms!team.htm +han$ =.$ Turner!Stokes$ 3.$ 1g$ 3.$ +ilpatrick$ T.$ &matya$ B. (?)((). Multidisciplinary rehabilitation for adults with multiple sclerosis$ /eview$ The Cochrane Library$ (?.

/umrill$ 8. 6. Dr. (?))E). Multiple sclerosis. Medical and psychosocial aspects$ etiology$ incidence$ and prevalence$ Journal of Vocational Rehabilitation, @($ A0F-?.