Multiple Sclerosis

MS is a chronic autoimmune disease that affects your central nervous system.

The central nervous system is made up of your brain, spinal cord, and optic (eye) nerves. Myelin wraps around your nerves and helps messages pass between your brain, spine, and other parts of the body. MS attacks your myelin and other cells and structures, making it hard for these messages to get through. This can affect your vision, strength, sensation, balance, walking, bladder and bowel function.

MS can have periods of attacks or relapses followed by remission/improvement in symptoms. MS attacks are difficult to predict. MS can also have a progressive pattern of slowly worsening symptoms. Some people with MS have a combination of attacks and progression.

Types of MS include:

• Relapsing remitting (RRMS): Your symptoms generally come on with attacks or relapses and then improve, but may not fully resolve. Your symptoms may be different each time.
• Secondary progressive (SPMS): If you have RRMS, you could transition to this category over time. Your symptoms slowly get worse over time but you may still have relapses.
• Primary progressive (PPMS): Your symptoms slowly get worse with no improvement in between.

There is no cure for MS but there are medicines called disease-modifying therapies (DMT) to help decrease the number of MS attacks and the progression of the disease.

What causes MS?

No one knows the exact cause of MS. It may be due to a combination of risk factors.

Genetic risk factors:

• There is no single gene that causes MS. There are genetic variations that put you at greater risk
• If you have 1 parent with MS, your risk of MS is 3-5%

Known environment and lifestyle risk factors:

• Low vitamin D levels
• Childhood/adolescent obesity
• Smoking cigarettes
• Female sex
• Previous infection with Epstein-Barr Virus (EBV)

What does it mean to have MS?

Everyone will have a different experience with MS. It can affect many parts of your body and is a lifelong condition. Depending on the type of MS you have, your symptoms may come and go (relapse) or get worse over time (progress).

You may have to deal with both physical, cognitive, and emotional challenges along the way. It is normal to experience a wide range of feelings. It will take some time to adjust to your diagnosis. Our team is here to support you.

What is a relapse?

A relapse, also called an attack or exacerbation, leads to new or worsening neurological symptoms lasting at least 24 hours due to new inflammation in the central nervous system, with no fever or infection.

A pseudo-relapse can cause temporary worsening of prior symptoms due to things like an illness, infection, stress, or getting too hot, without new inflammation in the central nervous system.

If you are having a relapse, you may have symptoms like:

• Vision loss
• Double vision
• Numbness/tingling
• Weakness of your arms or legs
• Clumsiness of your arms or legs
• Feeling off balance
• Trouble walking

What should I do if I think I am having a relapse?

• If you have a fever or infection, go to your family doctor, an urgent care clinic, or an Emergency Department (ED). They can evaluate for infection or systemic illness causing a pseudo-relapse.

If I am not a patient of the MS Clinic at St. Michael’s Hospital?*

• If you do not have a fever or infection and your symptoms continue or get worse for more than 24 hours, contact your neurologist.
• If you have severe symptoms such as blindness, inability to walk, severe weakness, or if you cannot reach your doctor and are concerned about ongoing worsening, go to the ED.

If I am a patient of the MS Clinic at St. Michael’s Hospital?

• If you do not have a fever or infection and your symptoms continue or get worse for more than 24 hours, contact the MS Clinic nursing relapse line. Your call will be returned.
• If you have severe symptoms such as blindness, inability to walk, severe weakness, or if you cannot reach a nurse or your doctor and are concerned about ongoing worsening, go to the ED.

What happens after I talk to a nurse on the relapse line?

The nurse will talk to your neurologist or another neurologist who is on call.

We may ask you to come in to see either your neurologist, a nurse practitioner or another doctor in the relapse clinic.

*The MS Clinic at St. Michael’s can only respond to people who are registered patients in the clinic.

How will you treat my relapse?

If your relapse is mild, we will watch and see if your symptoms improve on their own without any treatment.

If your relapse is affecting your day-to-day function, we may suggest high dose steroids to help decrease the inflammation in your central nervous system, as long as an infection is ruled out.

What do steroids do?

Steroids decrease inflammation in your central nervous system and speed recovery from a relapse. However, steroids are not proven to change the final level of recovery and are therefore not necessary for every relapse.

How are steroids given?

Steroids can be given by intravenous infusion or by mouth, and are usually given for 3 to 5 days.

What are the side effects of steroids?

Though steroids are usually safe to take for short periods of time, some side effects can include:

• Difficulty sleeping
• Mood changes
• Upset stomach
• Acne
• Lower immunity which can increase the risk of infections (including COVID-19)
• High blood pressure or blood sugar
• Bone damage (this is rare but can be serious)

If you need steroids often or for a longer period of time, there may be additional side effects like loss of bone density, diabetes, changes in fat distribution (like rounding of the face), thin skin, stomach ulcers and/or eye problems.

What if steroids don’t work?

Symptoms of a relapse may not completely resolve even with steroids, but relapse symptoms usually improve to a certain extent with time.

If your symptoms are severe (for instance, if you are unable to see or walk) and do not go away, your neurologist may admit you to the hospital for other treatments.

Disease Modifying Therapy for MS

Our team may discuss Disease Modifying Therapy (DMT) options with you. DMT options may include oral, injectable, or infusion therapies.

DMTs for relapsing remitting MS help reduce the chance of new MS relapses and new lesions in your brain and spinal cord on MRI. These therapies may also decrease the risk of accumulating disability from RRMS.

DMTs for primary or secondary progressive MS may help decrease the rate of progression of your MS symptoms.

DMT coverage can be obtained through a private drug plan and/or through the public Trillium Drug Program in Ontario.

Please apply for the Trillium Drug Program if:

• You are planning to start DMT for MS now or in the future AND
• You do not have a private drug plan OR your private drug plan does not adequately cover the cost of your prescription medications.

The Trillium Drug Program is available for Ontario residents who have high prescription drug costs in relation to their net household income. DMTs for MS can be costly BUT a significant portion of the cost can often be covered for patients who are part of the Trillium Drug Program.

To apply online please visit the Trillium Drug Program.

Trillium Drug Program Application Forms and Guides are available at local pharmacies, online, or by calling 416-642-3038 or 1-800-575-5386 (toll free).

What should I do before my first appointment?

Here are some helpful tips:

• We will call you 1 week before your appointment to let you know if it will be in-person, by phone or by computer.
• When we call, ask if you can bring someone with you (if you wish to).
• If your MRI was done outside of St. Michael’s Hospital, send us the images. If your images are stored on PocketHealth, you can email them to us at msclinicforms@unityhealth.to (see Other resources below). Otherwise, bring your images on a CD.
• Make a list of your concerns, symptoms or questions.

What should I bring to my first appointment?

When you come for your appointment, wear comfortable clothing and footwear and remember to bring:

• Your green Ontario Health card (OHIP).
• A pen and some paper in case you want to take notes.
• A list of all your medicines, pharmacy phone and fax numbers.
• Your immunization (vaccine) records.
• Your dentures, eyeglasses and any walking aids you may have.

What will happen at my first appointment?

When you come for your first visit:

• You will see a neurologist, and possibly a nurse practitioner or medical trainee. For more information on our team, see Your MS team below.
• We will ask about your medical history and any medicines you take.
• We will examine you and review any MRI images and other test results you have.
• We will work together to build a plan and talk about what happens next.
• We may order more blood tests and book an MRI or an evoked potential test for another day.
• You may also see a clinic nurse, occupational therapist, physiotherapist, or pharmacist. For a full list of the health care team and their roles, see Your MS team below.

If you have to cancel or reschedule your appointment, call 416-864-5377 between 8:30 a.m. and 4 p.m., Monday to Friday. Please give us at least 1 week’s notice if you need to change your appointment.

What do I bring to follow-up appointments?

When you come for your appointment, remember to bring:

• Your green Ontario Health card (OHIP).
• A list of your current medicines, pharmacy phone and fax numbers.
• A list of any new immunizations (vaccines) and their dates.
• Your eyeglasses.
• A family member or friend if you wish (ask about our policy when we call to confirm your appointment).

How do I renew my prescriptions?

Get your pharmacy to fax a renewal request to us at 416-864-5378 at least 2 weeks before you are due to run out.

Depending on the medicines you take, you may need to:

• Have bloodwork done before your neurologist can renew your prescription.
• Call your specialty pharmacy if your medicines come from there (for example, McKesson, Bioscript).
• Contact the patient support program responsible for your treatment if you require assistance.

Who do I contact if I have medical forms that need to be completed?

Your family doctor can complete most of your forms. If the form needs to be completed by a specialist, talk to your neurologist or their administrative assistant.

How do I get my lab test results?

Your neurologist will review your lab work if they ordered it. This may take up to 2 to 3 weeks. If your results show something that needs follow-up, a nurse or your neurologist will call you. Otherwise, we will review them with you at your next appointment.

How do I get my MRI results?

If your neurologist ordered an MRI, they will discuss the results with you at your next visit. Our nursing staff cannot tell you the results.

Please do not contact our nursing staff to ask about your lab or MRI results. We cannot answer your questions unless your neurologist has asked us to call you.

When is my next visit?

Your neurologist will decide whether you need a follow-up in a certain number of months or after you have had tests done. The date for your next visit will be sent to you by mail.

I have questions about my medicine

If you want to get started on the MS medication your neurologist recommended, or if you have concerns or are experiencing side effects to your MS medication, call the MS Clinic Nurses Line at 416-864-5333.  Leave a message and the nurse will call you.

NOTE: If you are having a serious allergic reaction, get medical help immediately.

I have new or worsening neurologic symptoms

• See MS relapses (above) for more information on relapses.

I have a fever, infection, or other medical issues

• Call your family physician, go to urgent care, or visit your nearest emergency room depending on the urgency of your symptoms.

I need to make an appointment

• Call 416-864-5377 and we will direct you from there.

We cannot talk to you about your symptoms or medicines if you contact us by email. Please phone the MS Clinic Nursing Line instead: 416-864-5333.

Director : Dr. Jiwon Oh

Neurologists: Specialize in diagnosis and treatment of MS.

Our neurologists are affiliated with St. Michael’s Hospital and the Faculty of Medicine at the University of Toronto.

• Dr. Mohammad Abdoli
• Dr. Nasser AlOhaly
• Dr. Pardh Chivukula
• Dr. Laura Chu
• Dr. Kristen Krysko
• Dr. Matthew Lincoln
• Dr. Paul Marchetti
• Dr. James Marriott
• Dr. David Morgenthau
• Dr. Alex Muccilli
• Dr. Dalia Rotstein
• Dr. Raphael Schneider
• Dr. Daniel Selchen
• Dr. Reza Vosoughi

MS clinic fellows, residents, and students: We are a teaching hospital.
In addition to your neurologist, you may also see a fellow (neurologist in training to become an expert in MS), resident (doctor training to be a neurologist), or medical student (training to become a doctor).

Neuropsychiatrists: Specialize in cognition, depression and anxiety.

• Anthony Feinstein
• Lu Gao

Physiatrists: Specialize in managing many symptoms to improve function, such as stiffness and walking.

• Tania Bruno
• Robert Simpson

Nurse Practitioner (NP): Provides care and collaborates with your neurologist and the clinical team.

Clinical Nurse Specialist (CNS): Provides support in maintaining clinical excellence by working collaboratively with your MS team.

Registered Nurse (RN): Provides education about medicines, resources and supports. They will discuss any new symptoms or medicine side effects you may be having and tell your neurologist.

Physiotherapist (PT): Helps with your strength, flexibility, balance, movement and other skills to help you manage your symptoms. This may include exercises and devices such as a walking aids.

Occupational Therapist (OT): Helps you manage your day-to-day activities and overcome obstacles you may be having. They recommend splints or orthotics, suggest exercises, check your home safety, and provide resources.

Social Worker: Provides support, counseling and resources to help with issues like work and money.

Drug Access Navigator: Helps access coverage to pay for medicines.

Clerical staff: Schedules appointments, checks on referrals or helps to direct your questions.

Physician Administrative Assistant: Schedules referrals, appointments and follow-ups. They also help with questions and prescription renewals.

Research Coordinator: Coordinates research studies, meets with those interested in participating in research, enrolls patients in studies, arranges study visits and collects study data.

Pharmacist: Provides education and support related to medicines.

Speech-Language Pathologist (SLP): Evaluates language, speech and swallowing. We do not have a dedicated SLP but can refer you to one.

Home and Community Care Support Services: You may be referred for home care services for nursing, OT, PT, SLP or social work.

Getting MRIs from outside facilities

You should send your MRI images to our clinic so they can be uploaded and viewed by your neurologist if done outside of St. Michael’s Hospital.

You should contact the hospital where the MRI was done for the process, which may include:

• PocketHealth: Electronic system to share MRI results.
  • Visit pocket.health/en-US/ and sign up.
  • Share all your records by email to msclinicforms@unityhealth.to, in advance of the visit.
  • Please confirm receipt by the front desk.
• CD
  • Provide to the front desk at check in.

Access to St. Michael’s Hospital health records

Online:

MyChart is an electronic system that allows you to access your doctor’s notes, lab results and MRI reports online.

To learn more, call 416-864-5450 or visit the MyChart page.

In person:

To get a copy of your health records, you must submit a Consent to Disclose Personal Health Information Form.

To learn more, call 416-864-6060 ext. 2169 or to access the form, visit the Health Records page.

MS Canada

MS Canada (previously Multiple Sclerosis Society of Canada) has information on treatment options (including DMTs), support groups and the latest MS research. They also have MS Navigators to guide and support you.

To learn more, call 1-800-268-7582, email info@mssociety.ca or visit mssociety.ca.

Data continues to show that COVID-19 vaccines are safe and effective in protecting from the impact of COVID-19 for those with multiple sclerosis (MS) and other neuro-immunological disorders.

We recommend that all persons with MS and other neuro-immunological disorders get their COVID-19 vaccine when eligible to receive it, since the risks of COVID-19 infection appear to outweigh the potential risks of the vaccine.

We recommend that all of our patients follow provincial recommendations regarding the COVID vaccines. Starting in the spring of 2023, an additional booster dose may be offered 6 or more months from the last COVID-19 vaccine dose or infection to the following individuals who are at increased risk of severe illness from COVID-19: (Discretionary NACI recommendation)

• Adults 80 years of age and older
• Adults 65 to 79 years of age, particularly if they do not have a known history of SARS-CoV-2 infection
• Adult residents of long-term care homes and other congregate living settings for seniors or those with complex medical care needs
• Adults 18 years of age and older who are moderately to severely immunocompromised.

This guide is based on data from vaccine clinical trials of the general population and data from studies of other vaccines in MS. We will continue to update the guide as new studies emerge.

The statements in this guide are in line with recommendations by:

• Canadian Network of MS Clinics
• National MS Society ( USA)

The following statements have been approved by the neurologists at the St. Michael’s Hospital MS Clinic. They are intended to be used as guidance statements regarding COVID-19 vaccination for people with MS (pwMS) and other neuro-immunological disorders.

• While people using anti-CD20 agents and S1P receptor agnostic medications may have a reduced vaccine response, vaccination still provides some protection against the most serious complications of COVID-19.
• When compared to vaccine side effects in the general population, persons with MS have a similar side effect response.
• The currently available vaccines (COVID-19 vaccines currently approved for use in Canada) do not contain live virus and will not cause COVID-19 infection. We have no reason to believe these COVID-19 vaccines will be dangerous for people with MS, including those on immunosuppressive drugs.
• It is unlikely that these vaccines will worsen MS or its symptoms, provoke a relapse, or prevent disease modifying therapies (DMTs) from being effective.
• Patients should stay up to date with their COVID-19 vaccines unless their MS treatment requires a delay (see below). This is because there is a higher risk for hospitalization due to COVID-19 among: people with progressive MS, those who are older, those who have a higher level of physical disability, those with certain medical conditions (e.g., diabetes, high blood pressure, obesity, heart and lung disease), and those on ocrelizumab and rituximab.
• It is important to continue your disease modifying therapy (DMT) unless advised by your MS healthcare provider to stop or delay it. Stopping some DMTs abruptly can cause your MS to worsen. We do not generally advise people to change their MS treatment to increase the efficacy of vaccines, because the potential harm would outweigh the potential benefit. Even a reduced response is better than none. You should still get vaccinated when eligible, even if on these therapies.

For more information please see NACI recommendations for COVID-19 boosters.

The bivalent COVID-19 vaccine booster is currently available to anyone over the age of 12 on Ontario.

All adults (even those not in a vulnerable population) can book an appointment through the COVID-19 vaccination portal or by calling the Provincial Vaccine Contact Centre (PVCC) at 1-833-943-3900. Eligible individuals can also book an appointment directly through public health units that use their own booking systems, indigenous-led vaccination clinics, participating health care providers and participating pharmacies.

Timing COVID-19 vaccines and specific MS medications

For people with MS on Ocrevus, Kesimpta, and Mavenclad, we generally recommend following our prior recommendations regarding timing of the COVID vaccine dose in relation to dosing of the medication. Further questions regarding fourth COVID vaccine doses should be directed to the treating neurologist.

Here are some general recommendations regarding the timing of COVID-19 vaccines and specific medications. Your treating neurologist may make adjustments, as needed.

For those taking:

ocrelizumab (Ocrevus) or rituximab (Rituxan)

• You may need to coordinate the timing of your vaccine with the timing of your next dose:
• We generally recommend getting the COVID-19 vaccine 4 to 5 months after your last dose.
• When you get notice that you will be able to receive a COVID-19 vaccine, let the infusion support program know (COMPASS).
• Your treating neurologist may recommend adjusting the timing of your next dose of Ocrevus or Rituxan.
• After you complete the COVID-19 vaccine schedule (this may require 2 doses), you can receive the next dose of Ocrevus or Rituxan 2 to 4 weeks later.

ofatumumab (Kesimpta)

• You may need to coordinate the timing of your vaccine with the timing of your next dose.
• We generally recommend getting the COVID-19 vaccine 2 to 4 weeks after your last dose.
• After you complete the COVID-19 vaccine schedule, you can get the next dose of Kesimpta 2 to weeks later.
• When you get notice that you will be able to receive a COVID-19 vaccine, please let the patient support program know (GO program). Your treating neurologist may recommend adjusting the timing of your next dose.

cladribine tablets (Mavenclad)

• The COVID-19 vaccine should be taken 3 to 6 months after the last dose, ideally when lymphocyte counts have recovered.
• If you are due for Treatment Cycle 2 of Mavenclad, you may want to discuss delaying Cycle 2 until you have received the COVID-19 vaccine.
• When you get notice that you will be able to receive a COVID-19 vaccine, please let the Mavenclad support program know (Adveva).
• Your treating neurologist will may recommend adjusting the timing of your next dose.
• If you have completed 2 treatment cycles of Mavenclad, and it has been more than 6 months after the last tablet of Cladribine, and your lymphocyte counts have recovered, we would recommend that you get the COVID-19 vaccine when available to you, as long as you do not have any other contraindications.

alemtuzumab (Lemtrada)

• We recommend getting the COVID-19 vaccine 3 to 6 months after the last dose, ideally when your lymphocyte counts have recovered.
• If you are due for Treatment Cycle 2, you may want to discuss delaying this until you have received the COVID-19 vaccine.
• When you receive notification that you will be able to receive a COVID-19 vaccine, please let the Lemtrada support program know (One to One).
• Your treating neurologist may recommend adjusting the timing of your next dose.
• If you have completed 2 treatment cycles of Lemtrada, and it has been more than 6 months after the last dose, and your lymphocyte counts have recovered, we would recommend that you get the COVID-19 vaccine when it is available to you, as long as you do not have any other contraindications.

In some cases, after discussion with you, your neurologist may recommend that you get the COVID-19 vaccine first, before starting to take Ocrevus, Kesimpta, Mavenclad, or Lemtrada. However, for patients with very active MS, there is a risk that the disease will progress if you delay treatment. This risk may outweigh the risk of COVID-19 infection. This decision will consider the evolving evidence on public vaccination.

For patients on fingolimod (Gilenya or generic fingolimod), ozanimod (Zeposia), or siponimod (Mayzent) your response to the COVID-19 vaccine may be decreased. However, we would recommend that you still get the vaccine, as long as you do not have any other contraindications. This is because even a reduced response is better than none.

For patients on azathioprine (Imuran), mycophenolate mofetil (Cellcept), or daily prednisone the response to the COVID-19 vaccine may be decreased. However, we would recommend that you still get the vaccine (as long as you do not have any other contraindications). This is because even a reduced response is better than none.

Most other disease-modifying treatments do not appear to interfere with vaccine responses, including glatiramer acetate (Copaxone and Glatect), teriflunomide (Aubagio), dimethyl fumarate (Tecfidera), interferon beta agents (Avonex, Plegridy, Rebif, Betaseron, Extavia), and natalizumab (Tysabri). If you are taking these medications, we recommend getting the COVID-19 vaccine as soon as it is available to you, as long as you do not have any other contraindications.

For patients who recently received high-dose steroids for a relapse (intravenous methylprednisolone [solumedrol]) or high-dose prednisone (1000-1250 mg daily for 3 to 5 days), we would recommend delaying the COVID vaccine until 2 to 4 weeks after the last dose.

Pregnancy and breastfeeding

The safety and efficacy of the COVID-19 vaccines are unclear in pregnant and breastfeeding women. However, pregnant and breastfeeding women may be at a higher risk of COVID-19 and complications. Persons with MS or other neuro-immunological disorders who are pregnant or breastfeeding should discuss COVID-19 vaccination with all their health care providers, including their obstetrician, family doctor and neurologist.

Additional information

For patients who have a confirmed or suspected COVID-19 infection, we recommend that you use this self-assessment tool (link below) for further direction/recommendations and to assess your eligibility for available therapies to prevent severe COVID-19 illness.  The second link below will direct you to COVID-19 assessment and potential treatment sites near you:

• Coronavirus (COVID-19) self-assessment
• COVID-19 assessment and potential treatment (ontario.ca)

And finally….

Vaccination with the COVID-19 vaccine does not guarantee immunity to COVID-19. Even after being vaccinated, we strongly recommend that all of our patients continue to remain cautious and follow all public health precautions. Continue to wear a face mask, wash your hands and use social distancing to protect yourself and slow the spread of the virus.

In accordance with Ontario Health recommendations, we are no longer recommending Evusheld in people with MS.  Please refer to the following links for additional information.

• What you need to know about Evusheld (Ontario Health)
• Ontario Health Recommendation on the Use of Evusheld