Developing an MS School

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Developing an MS School

• Alexander D. Rae-Grant, M.D., F.R.C.P.(C.)
• Nancy Eckert, RN
• MS Center of the Lehigh Valley
• Lehigh Valley Hospital

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Limits of 1 on 1

• Pressure of time
• Need to decision make
• Variable message
• Not framed as an educational exercise
• The MS LABEL shock
• Tired doctor, overwhelmed patient

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Our evolution...

• Presentations for the National MS Society
• Large group sessions
• Feedback from patients education paramount
• Handout materials for MS newly diagnosed
• We needed another way

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Why do an MS school?

• Educated consumers
• Multiplier effect of physician
• Consistent introduction to MS
• Spread message to a larger population
• Lifelong disorder, needed a good introduction to
  the disease

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Why small group learning?

• Large groups (gt20) impede direct communication
• Large groups can be intimidating
• Frequency of event (i.e. yearly) low
• Small group manageable, effective.

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Center philosophy

• Useful information is key
• Understandable, not condescending
• Consistent introduction
• We dont own the information
• Guidance, recommendation
• Base information on evidence where possible.

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Repeated talk...

• Refining the message
• Using the feedback
• Consistent message
• Can be given by others (PA, Nursing, etc.)

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Many words need defining

• Attacks
• Exacerbations
• Lesions
• Demyelination
• Axon, myelin
• Atrophy
• Ventricles

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Key data areas

• What is MS
• MS facts
• Symptoms
• Diagnosis (history, physical, testing)
• Classification
• Prognosis
• Treatment
• Symptom management

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What we avoid

• Selling anything
• Patronizing
• Trying to control information
• Doctor speak
• Speaking different languages

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The Yin MS school

• Monthly small group presentation
• 6-20 people with newly diagnosed MS
• Lunchtime with food
• Encourage questions, comments
• Allow discussion after the session
• Evaluation forms

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The Yang of MS School Lunch and learn sessions

• Varied program
• Complementary to MS school
• Topics emerge from service
• Examples psychological factors in MS, OVR,
  disability issues, work with MS, Yoga for MS,
  ability aides, hippotherapy, psychiatric aspects,
  role of allied health professionals, continence
  issues, mens sessions, womens sessions

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Collateral benefits of programs

• Break bread together
• Introduce new MSers to center, staff
• Group activity, not alone
• Not something to hide (modeling behavior)
• Others are functioning

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What we encourage

• Questions during the presentation
• Social interaction
• Getting comfortable with the center
• Picking up information and pamphlets
• Making contacts (networking)
• Bringing new ideas to the center
• e.g. Chinese Auction, MS walk mascot

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What actually gets taught?

• There are others out there
• Its OK to have this diagnosis
• It can be talked about
• The center knows what its up to
• We want you to know
• Its OK to ask questions
• Well respond to your suggestions

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Other lessons learned...

• Group size under 20
• KNOW THE SCOOTER NUMBERS (Lunch and learn)
• NO potato chips
• NO babies
• NO cellphones
• All participants get reminder calls

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Data to date

• April 2003 to date
• 14 sessions to date
• 117 participants average 8 (4-21)
• satisfaction results 4.5/5
• interaction 4/5

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MS school feedback

• Specific recommendations
• Research
• Emotional issues
• More on medications
• MS and exercise
• Caregivers
• A/CM
• Working with MS
• Nutrition
• Coping with stress

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Developing an MS School

• Alexander D. Rae-Grant, M.D., F.R.C.P.(C.)
• Nancy Eckert, RN
• MS Center of the Lehigh Valley
• Lehigh Valley Hospital

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Meet Meghan...

• 23 year old female from Emmaus
• One year ago became numb from the waist down for
  two weeks, then recovered
• Three weeks ago lost vision in the right eye, and
  just returning to normal
• What should she do?

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Multiple Sclerosis

• What is multiple sclerosis?
• Central nervous system disorder (Brain, Spinal
  cord)
• Inflammatory, demyelinating
• Relapsing or progressive
• Present over many years
• Can happen to anyone

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Early symptoms of MS

• Numbness, tingling, burning, itching, pain
• Walking difficulty (slow, weak, unsteady)
• Bladder symptoms (hesitancy, urgency)
• Dizziness
• Double vision
• Slurred speech
• Visual blurring one eye
• Coordination difficulties

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Oligodendrocyte and axon

• Oligodendrocytes make myelin, which wraps
  multiple times around the axon (nerve fiber).
  Like insulation in electrical wires.

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Demyelination

• Causes slowing or blocking of conduction, alters
  the function of neurons.

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MS brain lesions

• Optic chiasm and optic nerve lesions

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MS lesions in the medulla
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MS facts...

• Onset ages 20-40
• About 400,000 in USA have MS
• More further north, south of equator
• Females 31 over males
• More common in Caucasians
• Not contagious, no infectious cause
• Attacks more common after infections, with
  stress. Not with trauma, surgery.

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Whats new about MS?

• Axons injured early
• Lesions come and go 5-10x attack rate
• Remyelination occurs all the time
• MS may really be four diseases
• Pathology from biopsy, autopsy

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So what do we do with Meghan?

• Ask more questions
• Prior spells
• Medical illnesses (Lupus, meds, vitamin B12)
• Other symptoms heat intolerance, Lhermittes,
  fatigue, numbness and tingling, cognitive, bowel
  and bladder, sexual function
• Family history

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Diagnosis of MS

• Examination Seeking for neurological signs,
  general medical signs
• Laboratory
• MRI
• Evoked potentials
• LP
• Consider other diagnoses
• B12 deficiency, Stroke, MELAS, Lyme, other
  infections, Sjögrens, Eales, Lebers, etc.

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Meghan gets an MRI...
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MRI in MS

• White matter lesions
• Classically around the ventricles
• Also in the cortex
• Atrophy
• Spinal cord
• Brain stem
• MRI can be diagnostic, or nonspecific.

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MRI...

• Note the peri-ventricular (around the fluid
  spaces) and the sub-cortical white matter lesions.

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Periventricular disease and atrophy
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Diffuse cord abnormality, atrophy, and brainstem
lesions
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6 mm lesion
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Brainstem lesions often on the surface of the
brainstem
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Note sub-cortical and even cortical lesions
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MRI...

• Gadolinium injections lights up active MS areas,
  due to a breakdown of the blood brain barrier

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Evoked potentials

• Visual evoked, Brainstem auditory evoked,
  Somatosensory evoked.
• Measure the conduction of electricity into the
  spinal cord and brain
• May be slowed by MS lesions
• Not specific for MS
• Used now most when MRI non-diagnostic

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Spinal fluid

• Measure of immune activity of MS
• Increased white cells, lymphocytes
• Oligoclonal bands
• Increased IGG/ Albumin ratio
• Good to look for other diseases such as Lyme,
  etc.
• Not universally needed depends on case

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Back to Meghan...

• MRI shows white matter lesions
• CSF shows oligoclonal bands
• Visual evoked potentials were significantly
  slowed on the right.
• Diagnosis Relapsing MS

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Classification of MS...

• Relapsing attacks of symptoms/signs, with or
  without recovery, no interval worsening
• Secondary progressive Changed from a relapsing
  pattern to progressive in between attacks,
  usually with fewer attacks
• Primary progressive Gradual onset from the
  beginning, no attacks

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Classification...

• Progressive relapsing rare form, begins with
  progressive, later develops attacks
• Fulminant Very severe, rapidly progressive MS
• Benign Retrospective diagnosis

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What is an attack?

• attackrelapseexacerbation
• Defined as worsening of MS symptoms or new MS
  symptoms lasting more than 48 hours and not due
  to fever or infection
• May or may not correlate with MRI enhancing
  lesions
• It may be difficult to be sure if it is an
  attack

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Meghan continued...

• So Meghan has relapsing MS. What do we talk
  about?
• Pregnancy
• Prognosis
• Prevention of further attacks or progression
• Answering questions...

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Pregnancy in MS

• Data show no change in prognosis in the year of
  pregnancy
• Fewer attacks during pregnancy
• No major issues of pregnancy conduct
• More attacks first 6 months after pregnancy
• Avoid MRI, avoid medications
• Children low likelihood of developing MS.

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Prognosis in MS...

• Untreated, most patients will develop some
  disability in 10 years
• Recent Mayo clinic data emphasizes good prognosis
  for most people with MS
• Untreated, most can walk at 25 years
• 10-20 have benign MS, never get significant
  disability

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Immune therapy for relapsing MS

• CRAB medicines
• copolymer (COPAXONE)
• interferon-beta-1-a (REBIF)
• interferon-beta-1-a (AVONEX)
• interferon-beta-1-b (BETASERON)

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Results of relapsing trials...
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CRAB medicines

• Reduce the number of attacks
• Reduce the severity of attacks
• Reduce MRI activity (Fewer new lesions, fewer
  enhancing lesions)
• May slow disability

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Who should be on CRABs

• Relapsing MS with recent attacks
• Some patients with one attack but active MRI
• Secondary progressive with continued attacks
• Not everyone needs CRAB if no attacks, stable
  MRI, often can monitor with MRI

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Who might not benefit from CRAB

• Primary progressive MS
• Secondary progressive MS with no attacks
• Patients with more active MS (may require more
  intensive treatment)

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Steroids in MS

• Evolving use
• ACTH no longer generally available
• IV methylprednisolone standard of care
• Possibly oral steroids in high doses
• Other forms available but unproven
• Use for attacks with FUNCTIONAL DEFICIT
• Use steroids sparingly
• Not the long term answer

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Steroid risks

• Elevated glucose
• Osteoporosis
• Aseptic necrosis hips, shoulders
• Cataracts
• Behavioral changes
• Weight gain
• Increased infection risk with daily use

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Lets meet another patient, Bob

• Bob is 67, retired, right handed
• Over the past year he has gradually developed a
  limp, drags his right foot, and has trouble
  writing.
• His past health is unremarkable
• His MRI shows white matter lesions, and his
  visual evoked potentials are abnormal. Blood work
  is normal. Spinal fluid shows oligoclonal banding.

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Bob

• He has intense burning pain in his legs which is
  worse at night, seems to be less when he walks
• He has painful spasms of his right leg which
  respond partially to stretch
• He has frequent urination, and when he has to go,
  he really has to go.

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Dx Primary progressive MS

• 10 of patients
• Usually onset in older age groups
• Slowly progressive spasticity and weakness
• Usually cognitive, visual relatively spared
• MRI changes may be minimal
• Response to treatment different from others

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So what can we do for Bob?

• Spasticity
• Common in MS
• Increased muscle tension, tightness
• May interfere with useful movements
• Phasic spasms rapid movements of limbs
• Tonic spasms tightening of limbs in place
• Spasms may be painful
• Treat when it gets in the way of function

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Spasticity

• Physical measures (stretching, therapy)
• Lioresal (Baclofen)
• Tizanidine (Zanaflex)
• Diazepam (Valium)
• Botox injections
• Lioresal pump

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MS related pain

• Common problem, 30 of patients
• Various types
• neck and back muscular pain
• facial pain (trigeminal neuralgia)
• limb pain (often burning, band-like)
• Pain due to secondary problems (e.g. hip disease
  due to steroids)

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Burning limb pain

• Tricyclic antidepressants
• Anti-epileptic medications
• gabapentin, valproic acid, topiramate,
  carbamazepine
• Non-steroidals
• Narcotic analgesics
• Tramadol

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Neurogenic bladder...

• Symptoms Urgency, Frequency, Hesitancy,
  Incontinence, Dysuria
• May be associated with bowel or sexual symptoms
• May range from a nuisance to a major problem

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Types

• Hypersensitivity
• Pelvic muscle spasticity
• Detrusor hyperactivity
• Hypotonic bladder
• Mixed problems
• Bottom line may be complex, may need urological
  evaluation and follow-up.

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Treatments...

• Physical measures, biofeedback
• Anti-cholinergics
• Alpha blockers
• Muscle relaxants
• Intermittent catheterization

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Another patient, Ethel...

• A 35 year old female with MS for 6 years
• Multiple attacks (3/year) of optic neuritis,
  ataxia, numbness of the legs
• Failed interferon, copaxone
• Has gone from a cane to a quad cane recently
• MRI shows multiple enhancing lesions

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What else is there?

• Methylprednisolone boosters
• Azathioprine
• Methotrexate
• Cyclophosphamide
• Interferon-beta-1b (if not previously used)
• Mitoxantrone
• Combination therapies

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Another patient, Nina...

• Nina is 26, works full time, and was just
  diagnosed with MS. She is on copolymer 20mg sc
  daily, tolerating it well. Her main problem is
  severe, distressing fatigue. She comes home after
  work, flops onto the sofa, and drags herself to
  bed a couple of hours later. What are we to do?

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Fatigue management...

• Exercise
• Energy conservation
• Avoiding heavy meals
• Amantidine (Symmetrel)
• Provigil
• Methylphenidate (Ritalin, Adderal, Concerta)

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Fatigue two...

• Antidepressants (SSRIs)
• Assessment for sleep disorders?
• 4-aminopyridine

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Questions?