Andrew Kemp
Service Development Officer
MS Society, South West

One aim: to beat MS
38,000 members
9,000 volunteers
260 staff members
The UK’s leading MS charity, providing information and support, funding research and fighting for change for 60 years.
Since 1956, the Society has invested over £148 million of today’s money in research.
The Society is a democratic organisation: one member, one vote

Approximately how many people have MS?
Somerset: 900
Cornwall:
Devon:
UK:
World:
900
1,200
100,000
2,500,000

20 service development officers across the UK
We work with people affected by MS, health, social care & allied professionals and partner organisations e.g.
The Somerset Neurological Alliance : www.somersetneuroalliance.org.uk
The South West Alliance of Neurological
Organisations (SWANO) : www.swano.org
Our role is to support the development of new and existing services for people affected by MS

Edge of Sanity
Bloodbath
Katatonia
Ribspreader
Maceration
Incision
Obliterhate

MS is one of the most common diseases of the central nervous system
Approximately 100,000 people have MS in the UK
Roughly three times as many women have MS as men.
It’s usually diagnosed in early adulthood
Roughly 2,500 people are diagnosed every year
There are around 2,500,000 people with MS worldwide
MS is more common in people who live farther from the equator

The CNS consists of the brain and spinal cord
It’s enclosed in the skull and back bone
The CNS receives, processes and stores information
It initiates instructions for bodily activities

T cells are highly specialised defender cells. They mistake myelin for a foreign body
The immune system attacks cells
This process of stripping and damaging myelin is known as demyelination
The process causes inflammation

The axon is surrounded by myelin, which provides a protective sheath of fatty protein.
Messages are conducted along the axon at speeds of up to 268mph
Impulses zip from the brain to parts of the body and then back again
The greater the diameter of myelin, the faster the impulse
Damaged myelin causes delays to or blocks messages.

Types of MS
Symptoms of MS
Treatments and therapies
MS support

Relapsing Remitting MS (RRMS)
• Distinct attacks of symptoms
• They then then fade away either partially or completely
• Around 85 per cent of people with MS are diagnosed with this type.
For most people with MS, this is the way their MS begins, except for the small group of people who have primary progressive MS (about 15 per cent of all people with MS).

Relapsing Remitting MS
Relapse: "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".
• Come on over hours or days
• Stay for usually 4 to 6 weeks
• Mild to severe
• Can require hospitalisation
• Many manage at home, with the support of the GP, MS specialist nurse, and other care professionals.
(cont …)

Relapsing Remitting MS (RRMS)
• Often complete recovery
• Approx half relapses leave lingering problems
• If myelin damage severe some symptoms remain ……
……. but can still improve over following months.
Causes
• Stress : although evidence not totally clear
• Infections : encouraged to beat bacterial infections early
• Pregnancy : increased risk in months immediately after birth (many women with MS find that they have fewer relapses during pregnancy.)

Secondary Progressive MS (SPMS)
• A stage of MS that comes after RRMS in many cases.
• Neurologists generally agree that SPMS is a:
"sustained build up of disability, independent of any relapses".
• Most people with RRMS will eventually develop SPMS.
• Varies widely but, on average, around 65 per cent of people with RRMS will develop SPMS 15 years after being diagnosed.
• Characterised by a worsening of disability, rather than by relapses followed by recovery.
(cont …)

Secondary Progressive MS (SPMS)
• Some people will continue to have relapses with secondary progressive MS. It can make it harder to work out whether your MS is relapsing remitting or secondary progressive.
• Recovery can take some time. It can be hard to tell whether symptoms are due to progression (therefore may remain) or the lingering effect of a relapse (and will go).

Primary Progressive MS (PPMS)
• Affects about 10 to 15 per cent of people diagnosed with MS.
• So called because from the first (primary) symptoms it’s progressive.
• Symptoms gradually get worse over time, rather than appearing as sudden attacks (relapses).
• Usually diagnosed in people in their forties or fifties – older than the average age for relapsing remitting MS – but it can be diagnosed earlier or later than this.
• People with PPMS can experience many of the same symptoms for RRMS.

MS is complex, and has many symptoms.
Most people won't experience them all & certainly not at the same time. There are also other conditions with similar symptoms to MS.
• Balance, walking and dizziness
• Bladder
• Bowel
• Eyes and sight
• Fatigue
• Memory and thinking
• Mental health
• Pain
• Sexual problems
• Spasms and stiffness
• Speech
• Swallowing
• Tremor

Disease Modifying Drugs (DMDs)
• DMDs aren’t a cure for MS
• They can reduce the frequency and severity of relapses
• They're not effective for primary progressive MS
• Clinical trials have shown that DMDs reduce the number of MS relapses by around a third over two years.
• DMDs cause some side effects – access criteria
• N ot yet known if any DMDs might slow the rate of disability long term
• The most common drugs are injected
From last Wednesday NHS in England & Wales able to prescribe Aubagio (previously known as teriflunomide) to people with relapsing remitting MS. First oral treatment. In trials found to reduce relapse rates by
30% and reduce risk of progression by 30%.

Therapies
Some treatments aren't suitable or don't work well & many people with MS find it useful to actively manage their health through:
Complementary and alternative therapies
Exercise
Physiotherapy
Diet

Emotional support support groups dealing with a diagnosis telling people you have MS getting help
Practical and financial support work and money (CAB partnerships) care insurance driving short breaks and respite home adaptations wheelchairs and scooters

Publications

Andrew Kemp
Service Development Officer
MS Society, South West
020 8438 0767 akemp@mssociety.org.uk