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Multiple Sclerosis Patient Communication Guide:FAQs and Management Pearls

Navigating a new diagnosis of multiple sclerosis (MS) can be stressful and challenging for patients. They may

experience a variety of early challenges, including:

• Little knowledge about the disease

• Difficulty facing the reality of living with an illness

• Confusion or struggles around treatment decision making

• Communication issues

• Lack of psychological support

MS is a complex disease. Understanding its course, symptoms, and

treatments is challenging—even for healthcare professionals. For

patients, it can be overwhelming, frightening, and discouraging. They

must confront the unpredictability of the disease, their fear of losing

control over it, losses in physical and mental abilities, and worries

about finances and jobs.

Patients today—more than ever before—are

encouraged to become engaged in their healthcare

and see themselves not just as “receivers of care,” but

also as key players in the management of their disease.

Similarly, we as healthcare professionals are evolving

from “providers of care” to motivators and supporters

of our patients.

We can help our MS patients most by making them

feel better about their future. This includes helping

them set realistic expectations about their disease

and explaining the critical role of treatment adherence.

We can assist with reimbursement, identify available

resources, and bring in professional resources when

needed. We can also recognize that family members

and loved ones are essential players on the team and

need support and guidance, too.

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Frequently Asked QuestionsMost patients with MS turn to their clinician as their most-trusted source of information—despite the

abundance of material available on the Internet and other mass media and from friends and family. Your

opinions and expertise are essential for validating—or invalidating—the accuracy and reliability of the material

they read. Encourage your patients to bring their list of questions to clinic visits. Below are some common

ones they may ask and suggestions for addressing them.

Can MS be inherited?Although MS is not directly inherited, genes do play a

role, and genetic factors may make certain people more

susceptible to MS by increasing their risk. Other factors,

such as the environment, also play a role.

What is MS?MS is a chronic neurologic disease that affects different

parts of the central nervous system at different points

in time. Researchers consider MS to be an immune-

mediated disease in which the body’s immune system

mistakenly attacks healthy brain and spinal cord tissue.

Is MS contagious?Some patients may have read that MS is caused by a

viral infection. Reassure your patients that they can’t

give MS to someone else.

What causes MS symptoms?By interrupting the messages that the brain sends

to the body, MS can cause many symptoms. These

range from weakness and muscle tightness to visual

changes, numbness, and bladder and bowel problems.

Most patients with early MS tend to have flare ups

(“relapses”) that then subside (“remit”) for long

periods of time. Reinforce with your patients that these

problems may come and go and are not a sign that their

medication is not working.

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How do I know what treatment is right for me?It’s important to explain to your patient that treatment options depend on lifestyle and

personal preferences, as well as clinical presentation. Also be sure that your patients

understand that you are only one player on their MS care team and that treatment

decisions are collaborative.

Regardless of the specific treatment chosen, help your patient understand that the

goals of therapy are to prevent further disability and preserve function. Explain that

people who take their prescribed medications—particularly in the early stages of the

disease—do much better than those whose disease is untreated. With fewer relapses,

patients have more time for work and play.

Let your patient know that MS research is very active and evolving rapidly, with many

new treatments in advanced stages of development. Researchers are continuing to

look for safer, more-effective, and easier-to-use MS treatments.

Frequently Asked Questions

Is MS fatal?The life expectancy for people with MS is only slightly

reduced compared with that of the general population

and has increased over time—thanks to research

breakthroughs. Many of the leading causes of death in

MS patients, such as heart disease, cancer, and stroke,

are unrelated to MS and are preventable or manageable.

Tell your patient that MS affects “quality of life” more

than “quantity of life.”

Is there a cure for MS?There is no cure for MS, but many therapies can keep

MS from getting worse and may help improve health

and quality of life. Research clearly shows that disease-

modifying therapies are very good at reducing relapses

and slowing progression. Emphasize that the earlier

therapy is started, the better.

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Disease-Modifying Therapies for MSFDA-approved medications are summarized in the table below. All have demonstrated efficacy in terms of

reducing the number and/or severity of relapses, slowing the progression of the disease, and/or reducing the

number and size of brain lesions. The major advantages and disadvantages of each are summarized in the table

below.

GENERIC NAMEROUTE OF ADMINISTRATION ADVANTAGES DISADVANTAGES

Interferon beta-1a SC 3 times per week Injections are not daily, smaller needles than IM therapy

Injection-site reactions, flu-like symptoms, depression, thyroid dysfunction, liver enzyme abnormalities

Interferon beta-1a IM once per week Once-weekly injections

Interferon beta-1b SC every other day Injections are not daily, smaller needles than IM therapy

Peginterferon beta-1a SC every 15 days Less frequent administration than non-pegylated interferon beta formulations

Glatiramer acetate SC daily No flu-like symptoms, smaller needles than IM therapy

Daily injections, injection-site reactions, vasodilatation, rash, dyspnea, chest pain

Glatiramer acetate (generic)

SC daily Less expensive and shown to be equivalent to daily glatiramer acetate

Glatiramer acetate SC 3 times per week Injections are not daily Injection-site reactions, vasodilation, rash, dyspnea, chest pain

Natalizumab IV every 4 weeks Infrequent injections, option for patients who have not responded to other treatments

Increased risk of PML, headache, fatigue, arthralgia, allergic reactions

Mitoxantrone IV every 3 months Infrequent injections, option for patients who have not responded to other treatments

Increased risk of heart damage and leukemia, nausea, alopecia, menstrual disorders, infections, asthenia, leukopenia, elevated liver enzymes

Fingolimod Oral, daily No needles, capsule Headache, influenza, diarrhea, back pain, liver transaminase elevations, cough, risk of PML

Teriflunomide Oral, daily No needles, tablet Increased ALT levels, alopecia, diarrhea, influenza, nausea, paresthesia, pregnancy category X, hepatotoxicity

Dimethyl fumarate, BG-12 Oral, twice daily No needles, capsule Flushing, gastrointestinal disorders, risk of PML

Alemtuzumab Infusion, daily for 5 days initially and then for 3 consecutive days 1 year later

Infrequent treatment, option for patients who have not responded to other treatments

Black-box warning for hematologic toxicity, infusion reactions and infections

ALT = alanine aminotransferase; IM = intramuscular; IV = intravenous; PML = progressive multifocal leukoencephalopathy; SC = subcutaneous.

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MS-Related Complications and Management OptionsMS symptoms can vary in type and complexity, and patients may not realize their importance or even that they relate to their disease. Some patients may be embarrassed to talk about certain symptoms, so communication is key. Some common MS symptoms and management suggestions are summarized in the table below.

SYMPTOM

MANAGEMENT OPTIONS

NONPHARMACOLOGIC PHARMACOLOGIC

Bladder Dysfunction

• Advise patients to avoid caffeine and drink plenty of water• Teach patients to “train” the bladder with pelvic floor exercises

and timed voiding• For peace of mind, suggest that they carry extra protection (pads)

and a change of clothes

• Anticholinergics• Alpha blockers• Antibiotics for urinary tract infections• Botulinum toxin• Cholinergics

Bowel Dysfunction

• Describe how a high-fiber diet, increased fluids, and physical activity can help

• Stool softeners• Suppositories

Mood Changes

• Assess changes in mood and anxiety• Discuss stress reduction and social connections• Make appropriate referrals for therapy and support groups

• Antidepressants

Cognitive Dysfunction

• Do regular screenings and/or refer for testing• Make suggestions for memory aids (eg, calendars, voice recorders)• Refer to a neurologist or neuropsychologist, if needed

Fatigue • Review medications and comorbid conditions• Discuss sleep hygiene, exercise, and contributors to fatigue in the

environment (eg, poor lighting)

• Amantadine (off label)• Modafinil (off label)• Amphetamine/amphetamine-like

agents (off label)• Armodafinil (off label)

Sensory Symptoms

• Acknowledge that sensations of numbness, tightness, tingling or burning can be puzzling and sometimes painful

• Describe stretching exercises, massage tips, and aids for balance and mobility

• Refer to a physical or occupational therapist

• Acetaminophen and non-steroidal anti-inflammatories

Sexual Dysfunction

• Make it easy for your patient to feel comfortable discussing this topic• Review medications that may be a factor

• Phosphodiesterase-5 inhibitors (for erectile dysfunction)

• Topical lubricants• Androgen therapy (low libido)

Spasticity • Recommend adaptive exercises as needed• Consider a referral for physical therapy

• Baclofen• Tizanidine• Benzodiazepines• Botulinum toxin• Intrathecal baclofen• Gabapentin (off label)

Speech and Swallowing

• Discuss the use of communication aids (eg, voice amplifiers) and tips for safer swallowing (eg, small bites and sips)

• Refer for speech and language therapy

• Percutaneous gastrostomy (in severe cases of dysphagia)

Tremor • Suggest environmental modifications (eg, large-handled utensils) and exercises for joint stabilization

• Understand that patients are often resistant to pharmacologic treatment; discuss the pros and cons

• Beta blockers• Clonazepam, gabapentin, primidone

(all off label)• Deep-brain stimulation

Vertigo • Describe maneuvers for repositioning when vertigo is felt • Meclizine (off label) • Benzodiazipines

Visual Symptoms

• Explain that eye pain and blurred vision in one eye are common, but interventions are not well-defined, and some of these symptoms may improve on their own over time

• Methylprednisolone (for optic neuritis)• Eye patch, intravenous methylprednisolone,

prism eyeglasses (for diplopia)

Walking • Discuss the benefits of exercise and recommend assistive devices (eg, orthotics, stabilizers) or physical therapy, if needed

• Dalfampridine

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Importance of Overall Wellness and Improving Quality of LifeMS affects a patient’s psychological, physical, social, and financial well-being throughout all stages of the

disease. Improving quality of life for patients with this condition is just as important as slowing disease

progression and improving survival. Clinicians can play an important role in this regard by encouraging

patients to eat healthfully, exercise regularly, and find emotional support.

Find emotional support. Any chronic disease increases stress, and MS is

no exception. Many patients with MS experience more symptoms during

stressful times. One way to relieve stress is to decrease the emotional

burden of the disease through a support network to share thoughts and

feelings and exchange information. Chapters of national MS organizations

(see next page) can give referrals for self-help and support groups. Some

patients prefer online communities or social media. Clinicians should stay

alert to the need for more emotional support and to signs of depression

and more serious psychological issues. A referral to a counselor, social

worker, or other specialist may be needed.

Eat a healthy, well-balanced diet. Although no specific diet has been

established for MS patients, good nutrition can maximize energy and

reduce fatigue. A dietary routine can also help improve bladder and bowel

regularity and sleep patterns. Discuss the basics of a nutritious, balanced

diet—such as increasing daily fruits, vegetables, and whole grains and

limiting saturated fat. For obese patients or those with specific dietary

requirements, a referral to a dietitian or nutritionist may be necessary.

Exercise regularly. Physical activity can help your patients maintain

flexibility, improve balance, and enhance emotional well-being. Encourage

your patients to jog or walk if strength and balance allow. If walking is

impaired, suggest stationary cycling or swimming. Many patients enjoy

yoga for the benefits of stretching and flexibility, as well as relaxation. Some

patients may need a referral to a physical or occupational therapist to

specifically address flexibility, coordination, balance, and strength.

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This activity is supported by an educational grant from Genentech.

© 2015 Med-IQ®. All rights reserved.

Sponsored by

Resources for Patients and CaregiversReassure your patients that they are not alone in facing the challenges of MS. Many organizations offer

advocacy, education, programs, and services for patients and families, support groups, and online tools

and applications for managing MS and its symptoms. Three key organizations to direct patients to for more

information are:

Multiple SclerosisFoundation

MSF

msfocus.org

Multiple Sclerosis Association of America

MSAA

mymsaa.org

National MultipleSclerosis Society

NMSS

nationalMSsociety.org