Panel discussion: MS: Would you know it if you saw it? Early diagnosis, treatment, and resources for patients Illinois Rural Health Association Peoria, Illinois August 13, 2015

Our Panelists Tamara Lott, LCPC One Counseling & Wellness, Washington, IL and Illinois Neurological Institute MS Center, Peoria, IL Supporting someone living with a chronic illness Importance of early diagnosis and treatment Dennis Garwacki, MD, neurologist and director Illinois Neurological Institute MS Center, Peoria, IL What is MS Treatment options Suzanne Carron, OTR/L, Dir. Community Partnerships & Programs, Gateway Area Chapter Kendall Hugel, Clinical and Community Services Specialist, Greater Illinois Chapter NMSS Staff Resources for Patients Resources for Healthcare Professionals

Who gets MS? Usually diagnosed between 20 and 50  Occasionally diagnosed in young children 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 We know that 340 individuals with MS, who self- identified with the MS Society, live in rural communities as identified by the MS Society criteria.

How important is early treatment? The Society’s National Clinical Advisory Board recommends that treatment be considered as soon as a dx of relapsing MS has been confirmed.  Irreversible damage to axons occurs even in the earliest stages of the illness.  Tx is most effective during early, inflammatory phase  Tx is least effective during later, neurodegenerative phase No treatment has been approved for primary- progressive MS. Treatment includes: relapse management, symptom management, disease modification, rehabilitation, emotional support. *The Use of Disease-Modifying Therapies in Multiple Sclerosis: Principles and Current Evidence. A Consensus Paper by the Multiple Sclerosis Coalition – March 2015

Emotional Changes and MS Adjusting to the diagnosis Generalized distress and anxiety On-going losses Depressive episodes and some less severe depressive symptoms Stress and reactions to stressful situations Emotional lability or mood swings Pseudobulbar affect Inappropriate behavior

What MS Is: MS is thought to be a disease of the immune system—probably autoimmune. The primary targets of the autoimmune attack are the myelin coating around the nerves in the central nervous system (CNS—brain, spinal cord, and optic nerves) and the nerve fibers themselves. Its name comes from the scarring caused by inflammatory attacks at multiple sites in the central nervous system.

How is MS diagnosed? MS is a clinical diagnosis:  Signs and symptoms  Medical history  Laboratory tests Requires dissemination in time and space:  Space: Evidence of scarring (plaques) in at least two separate areas of the CNS (space)  Time: Evidence that the plaques occurred at different points in time There must be no other explanation

What are possible symptoms?  Cognitive difficulties (memory, attention, processing)  Pain (neurogenic)  Heat sensitivity  Spasticity  Gait, balance, and coordination problems  Speech/swallowing problems  Tremor  Fatigue (most common)  Decreased visual acuity, diplopia  Bladder and/or bowel dysfunction  Sexual dysfunction  Paresthesias (tingling, (numbness, burning)  Emotional disturbances (depression, mood swings)  MS symptoms vary between individuals and are unpredictable

How is the disease course treated? 12 disease-modifying therapies are FDA-approved for relapsing forms of MS:  interferon beta-1a (Avonex® and Rebif®) [inj.]  interferon beta-1b (Betaseron® and Extavia®) [inj.]  glatiramer acetate (Copaxone®) [inj.]  fingolimod (Gilenya®) [oral]  natalizumab (Tysabri®) [inf]  mitoxantrone (Novantrone®) [inf]  teriflunomide (Aubagio®)[oral]  dimethyl fumarate (Tecfidera®)[oral]  Interferon beta1a (Plegridy®)[inj]  Alemtuzumab (Lemtranda™[inf]

What do the disease-modifying drugs do? All reduce attack frequency and severity, reduce scarring on MRI, and probably slow disease progression. These medications do not:  Cure the disease  Make people feel better  Alleviate symptoms

Society Resources for Your Patients 35+ chapters around the country Newly-designed Web site Access to information and referrals ( ) Educational programs (in-person, online) Connection programs (self-help groups, peer and professional counseling, friendly visitors) Consultation (legal, employment, insurance, long- term care) Financial assistance

What can you do for people affected by MS? Give them access to the National MS Society through to reach a Service Navigator; no one needs to be alone in coping with MS. Refer to a MS neurologist for definitive diagnosis and treatment (NMSS Partners in MS Care) Consult with the Professional Resource Center for assistance Make connections

Addressing the Challenges: MS Centers Partners in MS Care specialize in diagnosis, management, and treatment and of MS MISSOURI: John L. Trotter MS Center at Washington University Saint Louis University Department of Neurology Veteran’s Administration Medical Centers: at John Cochran The MS Center of Saint Louis at Mercy Medical Center MS Center for Innovations in Care at Missouri Baptist Saint Luke's Marion Bloch Neuroscience Institute: Multiple Sclerosis Center, Kansas City, MO ILLINOIS: Consultants in Neurology, Wilmette, IL Consultants In Neurology, Northbrook, IL Illinois Neurological Institute Multiple Sclerosis Center, Peoria, IL Neurologic Associates, Ltd., Palos Heights, IL NorthShore University HealthSystem Multiple Sclerosis Center, Evanston, IL Northwestern University Medical Center, Chicago, IL Rush University Medical Center, Chicago, IL University of Chicago MS Center, Chicago, IL *Pediatric MS Centers of Excellence *Pediatric MS Centers St. Louis Children’s Hospital

Society Resources for Healthcare Professionals Professional Resource Center Website:  Comprehensive MS library/literature search services  Clinical consultations with MS specialists  Professional publications  Professional education programs (medical, rehab, nursing, mental health)  Consultation on insurance and long-term care issues  NMSS app  search for MS Society