Life with MS: Striving for Maximal Independence & Fulfillment

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1 Life with MS: Striving for Maximal Independence & Fulfillment St. Louis, May 7, 2005 Florian P. Thomas, MA, MD, PhD MS Center, Department of Neurology Associate Professor, Saint Louis University

2 Brain Regions

3 The Spectrum of Autoimmune Diseases MS is part of the family of autoimmune diseases, some of which include: Lupus erythematosus Rheumatoid Arthritis Crohn s Disease Type 1 Diabetes Psoriasis

4 Prototypical Neuron

5 How Does MS Affect the CNS The Brain contains Neurons & Axons. A Insulation Layer (Myelin) surrounds the Axons. It helps electrical Impulses reach their Target. In MS, the Immune System attacks the Myelin. This leads to Plaques, Scarring & Axon Damage and impairs electrical Transmission. Clinically MS is characterized by periodic Loss of neurological Function & progressive Disability.

6 MS Statistics >400,000 People in US; ~2,5 Mill. worldwide Age at Diagnosis: Age ~80% relapsing remitting MS at Diagnosis 2-3 x as many Women as Men More common with northern European than with African, Asian, or Hispanic Origin More prevalent in colder Climates

7 Symptoms of MS Weakness Numbness Fatigue Vision Problems Slurred Speech Incoordination Memory Loss Depression Vertigo Pain Bladder+Bowel Dysfunction

8 MS Diagnosis Clinical Signs & Symptoms indicative of >1CNS Region Involvement separated by Time & Space MRI CSF Brain, cervical, thoracic, lumbar Gadolinium to evaluate Inflammation Cell Count & oligoclonal Bands Evoked Potentials measure Responses to visual, auditory & other sensory Stimuli

9 Forms of MS Increasing Disability Relapses with Disability Relapses Time Increasing Disability Increasing Disability Time Increasing Disability Disability Progression no distinct Relapses Time Relapsingremitting 55% Secondary progressive 30% Primary progressive 5% - 10%

10 Potential Triggers for MS Genetic Predisposition Infectious Agent Abnormal immunologic Response Environmental Factors MS

11 How Does MS Affect the CNS?

12 How Does MS Affect the CNS? Invasion of white Cells, primarily T Cells, into the CNS. Production of inflammatory Proteins around Blood Vessels in the white Matter. Inflammatory fluid leaks into the white Matter

13 How Does MS Affect the CNS? Destruction of Myelin Sheath interferes with electrical Signals. Regeneration of Myelin is variable. Continued Demyelination leads to Scarring (Plaques).

14 How Does MS Affect the CNS? Demyelination can transsect Axons. Axon Damage occurs very early. Transected Axons can t regenerate, permanent Disability.

15 How does MS affect the CNS

16 MRI Findings Gd Enhancement T1 black Hole Brain Atrophy (Shrinkage) T2 Lesion Spinal Cord Lesion

17 Invisible vs. Visible MS Relapses Physical Disability Cognitive Impairment Cognitive Impairment Brain Atrophy MRI Lesions

18 Rationale for aggressive Treatment 2-3 Yrs 30-50% worsen by 1.0 EDSS unit 5 Yrs 15-45% need assistive walking Devices 10 Yrs 50% go from relapsing-remitting to progressive MS 15 Yrs some bedridden, many unemployed Limited Recovery once Gliosis + axonal Disruption develop

19 MS Treatment Goals Treat the whole Disease Retard Disease Progression Reduce Relapse Rate Reduce CNS Inflammation Retard Brain Atrophy Improve Quality of Life Alleviate Symptoms Maintain Employability

20 Early vs. later MS Therapy Disability Treatment at Diagnosis Later Treatment Natural Course of Disease Later intervention Intervention at Diagnosis Disease Onset Time

21 Treatment Options for MS FDA-approved for relapsing MS Avonex (Interferon β1a) IM once a Week Betaseron (Interferon β1b) SC every other Day Copaxone (Glatiramer acetate) SC every Day Rebif (Interferon β1a) SC 3 X a Week Corticosteroids IV Methylprednisolone

22 Targets for Treatment

23 Other Immunotherapies Intravenous Immunoglobulin (IVIG) Monoclonal Antibodies Plasmapheresis, Rituximab Mycophenolate Mofetil, Cladribine Cyclophosphamide, Azathioprine Mitoxantrone, Methotrexate

24 How to choose Therapy Effectiveness Cognition Disability Immunogenicity Inflammation Relapses Lifestyle Convenience Frequency Side Effects Support Services Tolerability

25 Common Symptoms Symptoms vary among Patients & are unpredictable Common Symptoms include: Fatigue, Cognitive Difficulties & Depression Bowel, Bladder & Sexual Dysfunction Spasticity, Spasms & Weakness Numbness, tingling & paroxysmal Symptoms Vision Changes Pain (multiple Types & Causes)

26 Understanding Fatigue Motor Tiredness, mental Fogginess, Lack of Energy Single most common Symptom >75% affected 30% 1 st MS Symptom 1-40% worst Symptom Often Heat related

27 Managing Fatigue Medications: Modafinil, Amantadine, ASA Naps, Energy Conservation, cooling Techniques Managing Fatigue Rule out & treat other Causes: Depression, Exhaustion Improve Mobility & Exercise

28 Understanding Depression ~50% of MS Patients Must be taken very seriously! Multifactorial: Direct Effect of MS Challenge of Life with MS Side Effect of Interferons

29 Managing Depression Medications Treat other Causes Counseling Managing Depression Physical Activities

30 Understanding Cognitive Problems Affects 45%-65% of Patients, 5-10% severely Misdiagnoses: Depression, Stress or Laziness Leading Cause of Unemployment Linked to # MRI Lesions, but not physical Disability Specific Diagnosis by a Neuropsychologist Symptoms: Problems with Problem-Solving & Multi-Tasking Slowed Thinking, decreased Creativity Short-term Memory Loss & Forgetfulness Difficulty with visual & spatial Relationships Impulse Control Problems, Emotionality Personality Changes, Language Problems

31 Managing Cognitive Problems Medications: Stimulants, Aminopyridine, Aricept Cognitive Rehabilitation, Crossword Puzzles, Reading Managing cognitive Function Diseasemodifying Therapy Job Adjustment, Memory & Organizational Aids

32 Understanding Spasticity Sudden Muscle Contractions & Movements (Painful Spasms), Involuntary Muscle Stiffness 40-80% have some Spasticity

33 Managing Spasticity Medications Avoid aggravating Factors Managing Spasticity Improve Mobility through PT & Exercise Orthopedic Aids

34 Bladder Symptoms 80-95% have Bladder Problems Urgency, Hesitancy, Dribbling, Infections, Increased Frequency, Incontinence

35 Managing Bladder Problems Medications, treat Infections Managing Bladder Problems Kegel Exercises, Incontinence Pads Catheterization Consult a Urologist

36 Bowel Symptoms Constipation 35-45% Diarrhea & Incontinence less common Causes MS itself Not drinking enough Water (to avoid Bladder Problems) Reduced physical Activity

37 Managing Bowel Problems Medications: Laxatives, Stool Softeners, Enemas Exercises improve Bowel Motility Managing Bowel Problems 30 g Fiber Bulk Formers, 8-12 cups of Water every Day consult Gastroenterology

38 Putting the Pieces Together Remember: You are ultimately responsible for your own Healthcare. And: Learn to get on your Doctor s Nerves and feel good about it.

39 Putting the Pieces Together Be prepared for Doctors Visits; be on Time Be committed to your Treatment Plan Ask Questions, but don t waste Time Don t forget Lab Work Make a List of Questions Talk to Others & maximize your Knowledge Bring a trusted Friend to Appointments Get a 2 nd Opinion, but don t go Doctor Shopping Know what you want; be willing to say no

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