1. Update on Multiple Sclerosis Helen Ford Consultant Neurologist Leeds Teaching Hospitals NHS Trust

2. Overview Background Symptoms and signs of MS Diagnosis Update on treatments Moving On and Beyond

3. Background MS is the most common cause of neurological disability in young adults in the UK Working age population Prevalence 80-100,000 people with MS in UK Leeds – population 750,000 - 858 people with MS and 45 new cases per year

4. What is MS? MS is a disease of the central nervous system (CNS) An inflammatory reaction in the CNS causes loss of myelin and slowing of nerve conduction Areas of demyelination Loss of axons

6. Sites that are vulnerable to demyelination Optic nerves Brainstem Cervical cord Periventricular regions

7. Optic neuritis Blurred vision or loss of vision in one eye – often central Pain on moving the eye Impaired colour vision Reduced visual acuity Normal or swollen disc Central scotoma Pupil relatively dilated ‘Afferent pupillary defect’

8. Brainstem demyelination Double vision Loss of balance Clumsiness Eye movement disorder Nystagmus Intention tremor Ataxia

9. Spinal cord Limping or dragging one leg Numbness, tingling, tight band-like sensation L’Hermittes Bowel and bladder symptoms Increased tone, pyramidal weakness, brisk reflexes, extensor plantars Loss of vibration sense Sensory level

11. ‘Invisible symptoms’ Cognitive impairment – even at early stages of disease Fatigue – first and worst Pain Unpleasant or disabling sensory symptoms

12. MS disease course

14. Favourable prognostic indicators Early age at onset Female sex Relapsing remitting course Optic neuritis or sensory symptoms at onset Few attacks during the first 5 years

15. Making the diagnosis Clinical diagnosis History: neurological events separated in time Examination: Signs of damage to different areas of the CNS i.e. neurological signs separated in space Investigations: supportive not diagnostic

16. Aims of treatment Reverse existing impairments and disability Prevent long-term disability Reduce relapse rate

17. April 1993 Pivotal trial of Betaseron

18. Disease modifying treatments Interferon beta 1-b Interferon beta 1-a Copaxone Natalizumab Fingolimod

19. Interferon beta Reduces the number of relapses by a third Effective early in the disease course Eligibility -2 clinically significant relapses in previous 2 years No evidence of long-term effect on disability

20. Outcomes for the West Yorkshire treated population Does treatment with a disease-modifying drug influence the quality of life of people with MS? Do certain groups of patient respond better than others?

21. Quality of life

22. Different MS subtypes

23. Quality of life P<0.0001 P=0.04 P=0.0007

24. Natalizumab Humanised monoclonal antibody Inhibits trafficking of leucocytes across blood brain barrier Recommended for treatment of Rapidly Evolving Severe MS Risk of PML

25. New oral treatments Fingolimod - licensed by EMA 2011 - (Sphingosine 1-phosphate (S1P) receptor modulator which reduces peripheral blood lymphocytes due to the inhibition of S1P(1)-dependent lymphocyte egress from secondary lymphoid organs and thymus) Reduces relapse rate by 60%

26. Summary of current treatment Course of relapsing-remitting MS can be modified Uncertain/if any impact on later disease progression Newer drugs have different side effect profiles eg PML, cardiotoxicity New oral drug licensed and awaiting NICE approval

27. Severe Progressive MS Cognitive problems Speech and swallowing difficulty, PEG feeding Tremor affecting upper limb function Severe spasticity Urinary and faecal incontinence, catheterisation

28. Moving On and Beyond New programme for people with MS, MND and Heart failure ‘Empowering people with life limiting conditions to take control and live a new life to the full’

29. Objectives Improve access to the Hospice for non cancer patients Develop opportunity for peer support/empowerment for service developers & course attendees Collaborative working to address survivorship and Specialist Palliative Care for non cancer patients. Focus on survivorship, coping & advance care planning.

30. Programme Content SessionNames Introduction Goal Setting Sue Cooke (Facilitator), Sally Coppock (project lead) Linda (observer) Physical coping Sue Cooke (Facilitator), Gill Fulton/Sally Noble, Linda (observer) Communications Sue Cooke (Facilitator), Sue Smith, Gale (observer) Advance Care Planning Sue Cooke (Facilitator), Sally Coppock, Gale (observer) Psychological copingSue Cooke (Facilitator), Gill Fulton, Gale (observe Goal Setting and ClosingSue Cooke (Facilitator), Sally Coppock (project lead)

31. Motivation

32. Future Worries

33. Benefits Staff –Sharing knowledge –Learning new skills –Provide cross boundary holistic approach to care Patients –Improved quality of life –Peer support –Increased motivation