Multiple Sclerosis Pathway - Patient Information
More than 3,000 people live with Multiple Sclerosis (MS) in Saskatchewan, spread out across almost every part of the province. The goal of the MS Care Pathway is to promote early diagnosis, increase knowledge and coordination of care according to best practice guidelines.
Your care providers and supporters will help you live your best life with MS by:
implementing and adjusting drug treatment to slow the course of your MS,
treating relapses as required,
keeping track of changes in your health status,
helping you maintain physical function,
supporting your emotional health, and
making sure you have the information and support that you need to be engaged in your care.
A diagnosis of multiple sclerosis can take a while to process. Family, friends, co-workers, teachers or employers all have their own ideas of what MS is and what it means.
In fact, MS impacts each person differently. No one can tell you exactly what your future holds – but having a supportive health-care team and reliable information helps you to navigate your own path with MS.
These resources provide a useful overview of MS:
For more information:
Coordination of Care
A person with MS should try to maintain their own current contact list of care providers to call with an emergency, a relapse, or a problem or question about medications. Click here to open a form where you can enter your information, and print it or save it to your phone or computer. You can also register at MySaskHealthRecord to access information about your lab results, medical imaging reports, and clinic visits. You can also enter additional information in MySaskHealthRecord about your contacts, medications and appointment reminders.
Due to the diverse effects of MS, people may see a variety of different care providers. The goal of the MS Care Pathway is coordinated MS Care. Your family doctor, an MS nurse educator and a neurologist should play a role in navigating you to the care you need. Ideally, most information about you and your health status should be collected and shared by this care team.
A neurologist is a doctor who specializes in conditions affecting the brain and nervous system. General neurologists support people with a range of conditions like MS, Parkinson’s disease, stroke, epilepsy, dementia and brain injury.
A person with MS should have a regular neurologist, and should be seen for a comprehensive visit annually. The neurologist is also the person to call for suspected relapses or troubling neurological symptoms. The neurologist orders brain imaging and tracks the progress of the disease by reviewing MRI scans and keeping track of clinical symptoms. If appropriate, the neurologist will discuss MS treatments and help select a treatment. In Saskatchewan, neurologists are only located in tertiary centres (Regina and Saskatoon). MS specialist neurologists are only located at the Saskatoon MS Clinic.
MS can only be diagnosed by a neurologist, so anyone with an MS diagnosis has seen a neurologist at least once. If for any reason you would like to see a different neurologist than the one who diagnosed you, speak to your family doctor to get a referral.
MS nurses are located at the MS Clinic in Saskatoon (see next section) and at the SK MS Drugs Program office. MS nurses are trained in the comprehensive care of people living with MS, including management of MS symptoms and the use of MS drugs.
A person with MS can self-refer to the nurse educator with the SK MS Drugs Program – the nurse is available by phone to all residents of Saskatchewan and no physician referral is required.
Physicians may also refer a patient to the SK MS Drugs Program Nurse Educator for further education concerning management of their MS and information about MS drugs. The SK MS Drugs Program coordinator is also available to address questions on the process for accessing MS drugs, including eligibility criteria for coverage of various therapies.
To contact the SK MS Drugs Program Coordinator phone toll free at 1-866-655-7966.
To contact the SK MS Drugs Program Nurse Educator phone 306-655-8673/ Fax 306-655-8404, or call the MS Drugs Program
MS Society Knowledge Network
Multiple Sclerosis Society of Canada’s MS Knowledge Network is a service of knowledgeable navigators, available to talk to MS patients and families and provide consistent, quality MS information and support for anyone in Canada.
MS Navigators are not medical professionals, but they have access to vast stores of information collected by the MS Society about every aspect of MS. They can provide trusted information on MS to help you manage your own care, and help you find information and support that is tailored to your unique needs. Navigators can also connect people to the local MS Society staff for assistance with local programs and services.
Contact an MS Navigator to learn more about:
- Reliable information about multiple sclerosis
- Resources for managing your symptoms
- News about programs and services in your area
- Making sense of advances in MS research
- Guides and online resources for everyday use (e.g. how to apply for CPP, how to talk to children about MS)
- Help navigating health and community services
- Practical assistance finding income and employment support, financial planning and more.
Saskatoon MS Clinic
The Saskatoon MS Clinic houses the province’s clinical leadership in MS care and research, including the Saskatchewan MS Research Chair and the MS Drugs program. The clinic sees patients with suspected MS or confirmed MS, as well as patients with rare diseases of the central nervous system.
To attend the MS Clinic for the first time, patients require a physician’s referral. After the first visit, patients can contact the MS Clinic directly. The MS Clinic is a full service clinic that provides clinical assessment by a specialized neurologist and access to diagnostic imaging. In-house neurologists prescribe MS treatment and other medications, and monitor health status and disease progress. Patients may see other in-house providers for symptom management during their clinic visit, or the clinic will set up referrals to other providers.
Any MS patient can attend the Saskatoon MS Clinic for ongoing care, but many people with MS continue to see their local neurologist and MS nurse educator for day to day management and referrals, with access to the Saskatoon MS Clinic for specialized assessment and services.
Contact the Saskatoon MS Clinic:
Saskatoon City Hospital
RM 7717 - 7th Floor
Saskatoon, SK S7K 0M7
Phone: 306-655-7742 Fax: 306-667-3990
MS is treated with medication, which is known as disease-modifying therapy or DMT. The purpose of treatment for MS is to slow down the progress of the disease. Treatment is different from symptom management, which deals with effects of MS-related neurological damage on other parts of the body and mind.
There is strong evidence that disease-modifying therapy for MS reduces the number and severity of relapses and slows down the worsening of disability, particularly if initiated early in the course of the disease.
In Saskatchewan, most DMTs are eligible for exception drug status (EDS). Prescribing physicians submit the EDS application after you and your physician have decided if a DMT is appropriate for you. A series of steps determines the final cost (if any) to the patient. Your MS care team and the Saskatchewan MS Drugs Program staff can assist with this process.
DMTs can be quite complicated and costly. There are many resources to help you learn more about DMT indications, side effects and funding options. MS Nurses are located at the MS Clinic in Saskatoon and are knowledgeable about MS and DMTs. The Saskatchewan MS Drugs Program nurse educator is also available by phone to all residents of Saskatchewan for MS general information and advice about MS drugs.
To contact the Saskatchewan MS Drugs Program Nurse Educator phone 306-655-8673/fax 306-655-8404, or call the MS Drugs Program toll free at 1-866-655-7966. To contact the MS Clinic, phone 306-655-7742.
Saskatchewan MS Drugs Program
There are currently few drug therapies that can affect the course of progressive forms of MS. Non-drug treatment focuses on strengthening people with progressive MS to withstand the effects of the disease.
Rehabilitation resources are particularly important for helping people with progressive MS to maintain physical function. Progressive MS often goes along with stiffness or weakness in legs that starts out causing minor problems with leisure activities or climbing stairs, but over time can get worse and interfere with basic mobility and activities of daily living. Starting from the time of diagnosis, rehabilitation professionals (such as physiatrists, physiotherapists and occupational therapists) can be involved in developing wellness and conditioning strategies to promote and maintain health, reduce fatigue, and help you function optimally at home and at work.
When is it a relapse?
Changes in your symptoms can indicate a relapse if:
- your MS has been relatively stable for at least 30 days
- suddenly old MS symptoms get worse, or new symptoms appear
- it feels different from normal day-to-day changes in how you feel
- the new symptoms (or worsening) last for more than 24 hours
- there is no other explanation (like stress, cold or flu, exertion, etc.)
Contact your MS care team if you think you are having a relapse.
Read more about managing relapses.
Excellent resources on symptom management for people with MS are available from many sources. Find pathway-recommended information from these sources:
To keep notes about your symptoms you can use a diary or journal, check out smart phone apps, or a simple tracking form (below).
The best strategy for managing symptoms of MS is to have open and frank conversations with your health care providers about your symptoms, even if your experiences are personal or difficult to discuss. Your family doctor or an MS nurse can help answer your questions and suggest which health care provider you should see to investigate and manage your symptoms.
Finding a care provider in Saskatchewan
Depending on your unique symptoms, many different care providers may be involved in helping to keep you well, safe and comfortable. The following links may help you to identify medical care providers closest to your home.
Specialists and some public programs will still require a referral from your MS care team (neurologist, family doctor or MS nurse educator) prior to making an appointment for you. When you make an appointment directly with a private sector provider such as a physiotherapist, chiropractor, massage therapist or orthotist, be sure to confirm the cost and find out what is covered by your health insurance.
Locate a physiotherapist
- Sask Physiotherapy Association (search by community and area of practice or conditions treated)
Locate a public funded therapy program
Locate an orthotist
Locate a massage therapist
Locate a chiropractor
Locate a specialist physician
For assistance in finding a specialist consult the MS Society, or visit the College of Physicians and Surgeons on-line directory.
Locate a pharmacist
Eye Centre, Pasqua Hospital, 4101 Dewdney Avenue
Eye Care Center, Saskatoon City Hospital, 701 Queen St.
The following lists are meant to give you an idea of the many community resources available to support your physical, mental and financial health. In order to find specific resources in your community, we encourage you to use the following navigation services.
The MS Society of Canada provides access to navigators who are informed about MS-specific challenges. They can help you find appropriate resources in your community and work with you on solutions. Talk to MS Navigators by phone (1-844-859-6789) or web chat at mssociety.ca.
The Saskatchewan Programs & Services guide (link to Guide-2021-2-26-SCA-MSPrograms-v01) is a useful overview of what is offered locally by the MS Society in Saskatchewan.
Connect with trained professionals to help you find community, health and government services in Saskatchewan. Information is available 24/7 and operators can serve you over the phone in 175 languages, including 17 Indigenous languages.
- Dial or text 211
The following lists are meant to give you an idea of the many community resources available to support your physical, mental and financial health:
Assistive Equipment and Aids
Whether you have a permanent disability or you are dealing with temporary relapse, assistive devices are tools that can conserve your energy and make you safer and more comfortable doing tasks of daily living. Examples include:
- Mobility aids – from canes to walkers to wheelchairs and scooters
- Safety aids – grab bars for bathing, pot guards for kitchen safety, medic-alert services
- Labour saving devices – electric can-openers, reachers, gliding drawers and cupboards, (also labour-saving strategies for organizing your environment)
- Modifications at work – arm rests and modified chairs or keyboards
While over-the-counter tools (like canes or reachers) are often available in pharmacies, it is wise to consult with a physiatrist or an occupational therapist about your needs before you make purchases. Professionals can give you information about the full range of appropriate tools based on your unique needs, make recommendations for you, and advise about funding supports. In addition to tools, professionals and peer support organizations can make suggestions for strategies.
Some financial support programs may be available when major purchases or retrofits are required:
- Canadian National Institute for the Blind (CNIB)
- Kinsmen Foundation
- SaskTel services for special communication needs
- Sask. Aids to Independent Living (SAIL) Program
- SK Housing Corporation: Residential Rehabilitation Assistance Program
Driving and Transportation
People with MS need to get around. However, there are a number of ways that MS symptoms can affect your ability to operate a vehicle – which can affect your safety and the safety of others. A person with MS should be aware of potential changes in reflexes, eyesight, muscle weakness, and cognition, and be responsible when making the decision to get behind the wheel. Your MS care team may arrange for you to take drivers tests periodically.
Some transport options include:
- Modifications: Modifications can be made to vans or SUVs – including hand controls, ramps and wheelchair access.
- Parking: Disabled Parking Permits
- Public transportation: including para transit services, accessible city buses - contact your local city transit department
- Accessible vans and taxi services (may be offered by community based organizations or by private companies)
- Accessible car and van rentals
Physical activity is more than just a pleasant pastime – it is a prescription for a healthier life with MS. Most people with mild to moderate MS can enjoy almost any type of physical activity – just start slow and build up. If you prefer modified or supervised exercise programs, check to see what is offered in your community for people with limitations caused by MS or other chronic conditions.
Examples of modified exercise programs:
- MS-society sponsored programs (Regina- Saskatoon)
- Community-based programs for people with disabilities - check recreation and leisure guides for your community
- Forever in motion – physical activity programs for older adults and people with physical limitations
- Paralympic and wheelchair sports (you don’t have to be in a wheelchair all the time)
On-line programs you can do at home:
Navigating bureaucracy or speaking up to people and organizations with authority can be very difficult. People with MS can take advantage of experienced advocates to explain programs and entitlements to them in easy-to-understand terms, and to be on their side if they are treated unfairly. Some advocates include:
- Disability Claims Advocacy phone: 306-988-1246, toll free: 1-877-790-6339
- PovNet (includes Legal Aid SK, Pro Bono Law SK):
- SK Human Rights Commission
- Provincial ombudsman
Peer networks and support groups also play an important role in sharing information, giving confidence, and working for change. The MS Society can help you connect with a peer group in your area. Some provincial and national networks include:
- SK Abilities Council (Farmers with Disabilities Program)
- SK First Nations Network on Disabilities (NGO)– Saskatoon: 306-665-1215
- SK Voice of People with Disabilities
- Disabled Women’s Network (DAWN)
There is no doubt that living with MS takes a toll on people and families. Some neurological changes associated with MS can affect mood, emotions and behavior. Medications can also have such effects on some people. And on top of that, there can be stress, anger, disappointment and fear when dealing with a chronic condition. A MS care team tries hard to manage these symptoms proactively, but when things get out of hand there are community resources at hand call 911 or a community resources for help:
- Canadian Mental Health Association (CMHA) – SK:
- Mobile Crisis Helpline: Regina: 306-757-0127, Saskatoon: 306-933-6200
- Suicide Prevention and Support Helpline: Regina: 306-525-5333, Saskatoon: 306-933-6200, Prince Albert: 306-764-1011
- Child Abuse Helpline: Regina: 306-569-2724, Saskatoon: 306-933-6200, Prince Albert: 306-764-1011
- Farm Stress Line - SK: 1-800-667-4442
- Senior Abuse and Neglect Response: Regina: 306-757-0127, Saskatoon: 306-933-6200, Prince Albert: 306-764-1011
Employment and Education
Many people are diagnosed with MS early in life, and may be concerned about their ability to work Typically, MS does not prevent people from having a career – and should not prevent you from pursuing education and job opportunities. People who experience symptoms from their MS – either temporary relapses or progressive disability – are entitled to reasonable accommodations at work and at school. Accommodations can include things like:
- Modified conditions for taking exams and submitting assignments
- Special equipment and assistive devices
- Adjusted hours of work
- Adjusted tasks if possible
- Retraining for a more suitable role in the workplace
- Reserved parking
By law, you cannot be refused a job for which you are qualified, fired or expelled because of a disability, but at the same time you cannot be paid your wages or awarded a degree unless you can complete assigned tasks. It is important to communicate with your employer or academic institution about your needs and abilities, take advantage of accommodations, and inform yourself about your sick leave entitlements and other provisions for leave and medical supports.
Some resources for people with disabilities in the work force are:
- MS Society of Canada: A Guide to Employment & Income Support (link to Booklet-2021-2-26-SCA-MSEmploymentSupport-v01)
- MS Society of Canada: MS in the Workplace – an employer’s guide (link to Booklet-2021-2-26-SCA-MSinWorkplace-v01)
Employment counselling and supports:
- SK Abilities - Partners in Employment
- North SK Independent Living Centre (NSILC), Saskatoon
- South SK Independent Living Centre (SSILC), Regina
- SK Government: Workforce Development for People with Disabilities Program
If symptoms require you to change jobs, some resources are:
Income and Financial Assistance
Most people with MS can expect to have many disability-free years. But as disability starts to accumulate, it can have an effect on financial well-being in the form of reduced income (due to reduced work hours or changes in employment status) and higher costs of living (due to medical expenses, assistive devices, transportation, or hiring people to do things you can no longer do.) It’s a good idea to get advice early on about financial decisions and planning.
People with MS may have access to a variety of programs for extended insurance coverage, income replacement, support and financial planning. Visit the Government of Canada “benefits finder” for a customized list of federal and provincial programs available to you.
It is important to know what medical expenses are covered in Saskatchewan and what is not covered. If you have access to private medical insurance be aware of what types of benefits are available. Provincial income support programs (such as social assistance and SAID) include extended coverage for health-related expenses such as medical transportation, eyeglasses, therapy services, etc. For major capital expenses, charitable organizations may be able to help.
Family and Caregiver Supports
A person diagnosed with MS is not the only one who experiences the disease. In many cases, the whole family – whoever that might be – is affected by the diagnosis. Statistics show that with MS, like most chronic conditions, more hours of care are provided by family members than by health care professionals. While caring for loved ones is an important and rewarding experience, care givers have to be aware of their own needs and take advantage of community supports that provide knowledge and resources, respite care, encouragement and help.
The Canadian Mental Health Association Saskatchewan Division offers a special program designed to support and educate anyone who provides assistance to vulnerable people. Caregiver Affected Recovery Education (C.A.R.E.) recognizes the important contributions of both professional caregivers and informal caregivers, and emphasizes the importance of self-care and other important tools to help caregivers stay healthy amidst your responsibilities.
- To find out more about the Caregiver Affected Recovery Education program contact the Canadian Mental Health Association Saskatchewan Division (1-800-461-5483, email@example.com) or search on Facebook for C.A.R.E.SK.
- Caregivers can also access peer support (local or on-line) through the MS Society of Canada, call toll-free 1-800-268-7582 (Monday through Friday), extension 3149.
- Government of SK: People with Disabilities – family & social supports
- Caregiver Information & Support – a program of the Saskatoon Council on Aging
- Inclusion Regina: respite registry