Multiple Sclerosis: What You Need To Know. For Professionals

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1 Multiple Sclerosis: What You Need To Know For Professionals

2 What will I learn today? The Basics: What is MS? Living with MS: A Family Affair We Can Help: The National MS Society

3 What MS Is: MS is thought to be a disease of the immune system probably autoimmune. Its name comes from the scarring caused by inflammatory attacks at multiple sites in the central nervous system.

4 What MS Is Not: MS is not: Contagious Directly inherited Always severely disabling Fatal except in fairly rare instances Being diagnosed with MS is not a reason to: Stop working Stop doing things that one enjoys Not have children

5 What Causes MS? Genetic Predisposition Environmental Trigger Autoimmunity Loss of myelin & nerve fiber

6 MS in the World, United States, State, and County In the United States today, there are approximately 400,000 people with multiple sclerosis (MS) with 200 more people diagnosed every week. Worldwide, MS is thought to affect more than 2.1 million people. Our Greater Northwest Chapter serves over 12,000 people living with MS and more than 72,000 others whose lives are directly impacted (family members, friends, co-workers and caregivers) in Alaska, Montana, Western and Central Washington. The Chapter s Census reports 3,461 individuals living with MS in King County

7 What happens in MS? Activated T cells......cross the blood-brain barrier activate other immune cells and launch attack on myelin & nerve fibers... to obstruct nerve signals. myelinated nerve fiber myelinated nerve fiber

8 Who gets MS? Usually diagnosed between 20 and 50 Occasionally diagnosed in young children and older adults More common in women than men (2-3:1) Most common in those of Northern European ancestry More common in Caucasians than Hispanics or African Americans; rare among Asians More common in temperate areas (further from the equator)

9 What is the genetic factor? The risk of getting MS is approximately: 1/750 for the general population 1/40 for person with a close relative with MS 1/4 for an identical twin 20% of people with MS have a blood relative with MS The risk is higher in any family in which there are several family members with the disease (aka multiplex families)

10 How is MS diagnosed? MS is a clinical diagnosis: Medical history Symptoms and signs Laboratory tests (for confirmation only) Requires evidence of dissemination in time and space: Space: Evidence of scarring (plaques) in at least two separate areas of the central nervous system Time: Evidence that the plaques occurred at different points in time There must be no other explanation.

11 What are possible symptoms? Fatigue (most common) Bladder/bowel dysfunction Sensory problems (numbness, tingling) Emotional changes (depression, mood swings) Walking difficulties Thinking/memory problems Vision problems Stiffness (spasticity) Pain (neurogenic) Sexual problems Speech/swallowing problems Tremor Breathing difficulties Impaired temperature control

12 What is the prognosis? One hallmark of MS is its unpredictability. Approximately one-third 1/3 will have a very mild course Approximately one-third will have a moderate course Approximately one-third will become more disabled

13 Is there a cure for MS? Unfortunately no not at the present time Without knowing the underlying cause of MS, it is very difficult identify the cure The Society and other agencies are funding research to stop disease progression, repair damage to the nervous system, and ultimately to prevent the disease from happening in the first place

14 So what do we do in the meantime? While we continue to look for the cure, the focus of MS care is: Treating relapses (aka exacerbations, flare-ups, attacks) Slowing disease progression Managing symptoms Maintaining/improving function Enhancing quality of life

15 How are exacerbations treated? Exacerbations (flare-ups of new symptoms or worsening of old ones, lasting at least 24 hrs.) may be treated with corticosteroids to reduce inflammation. Short course of intravenous, high-dose methylprednisolone, sometimes followed by an oral taper Not all exacerbations require treatment

16 Is it possible to alter the course of MS? Eight disease-modifying therapies are FDA-approved to treat MS: fingolimod (Gilenya ) [oral] interferon beta-1a (Avonex ) [inj.] Interferon beta-1a (Rebif ) [inj.] interferon beta-1b (Betaseron ; Extavia ) [inj.] glatiramer acetate (Copaxone ) [inj.] natalizumab (Tysabri ) [inf.] mitoxantrone (Novantrone ) [inf.] All reduce attack frequency and scarring on MRI, and may slow disease progression

17 How important is early treatment? The Society s National Clinical Advisory Board recommends that treatment with a disease-modifying therapy be considered as early as possible. The goal is to reduce the risk of early, potentially disabling damage in the central nervous system.

18 What do the disease-modifying drugs do? These medications reduce the number of attacks and probably slow progression These medications do not: Cure the disease Make people feel better Alleviate symptoms

19 How are MS symptoms treated? Symptoms caused by inflammation are likely to disappear as the inflammatory attack subsides. Symptoms caused by scarring and damage to the nerve cells are likely to remain. There are a variety of medications and management strategies to manage the symptoms that occur.

20 Which symptoms are treatable with medication or other strategies? Fatigue (most common) Vision problems Stiffness (spasticity) Bladder/bowel dysfunction Sexual problems Pain Emotional changes (depression, mood swings) Walking difficulties (weakness, imbalance) Cognitive changes (attention, memory, processing) Speech difficulties

21 What else can someone do to live well with MS? Reach out to support system; no one needs to be alone in coping with MS. Stay connected with others; avoid isolation. Become an educated consumer. Make thoughtful decisions: Talking about diagnosis with others Making employment decisions Planning wisely for the future Be aware of common emotional reactions.

22 What about depression? Pay attention to signs of depression Depression differs from normal grieving Depression is more common in MS than in other chronic illnesses (thought to be a symptom of MS as well as a reaction to it) More than 50% of people with MS will experience a significant depression at some point along the way Depression can occur at any time even as a first symptom of MS

23 Caring for someone living with MS Along with commitment, deep affection, and a sense of partnership: Unmanageable feelings of grief, loneliness, anger, guilt (and no idea what to do with them) Depression Exhaustion (emotional and physical) Fear of the future-medical, logistical and financial Loss of time and space for themselves Lack of familiarity with available resources Lack of attention to their own health and well being And no one asks them about any of it

24 What does the National MS Society have to offer? Programs and services Information and referral ( ) Web site (www.nationalmssociety.org) Publications, webcasts, and podcasts Educational programs for individuals and families Self-help groups (for caregivers) and peer support Self Advocacy Services and Financial Assistance Care Management Advocacy at the national and state level Consultations legal, employment, insurance Volunteer engagement opportunities

25 Questions? We believe that every person in our community can play a role in improving the lives of those affected by MS and that - with your help - a world free of MS is within our grasp.

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