diagnosed with multiple sclerosis: managing treatments and building a support system
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physiotherapy and occupational therapy are two treatment options that can help you manage the symptoms of multiple sclerosis and adapt as your body and life change.
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it can be challenging to determine if you are experiencing early signs of multiple sclerosis (ms). in some cases, diagnosis can occur swiftly after the first signs and symptoms appear, but for others, several years may pass before they receive the correct tests.
once a person is diagnosed with ms, finding the right care team, understanding treatments, and engaging with available resources are all great ways to develop a community around oneself to help cope and manage the disease. since it can cause debilitating changes in overall quality of life due to symptoms, it’s vital to ensure that once diagnosed, the ball gets rolling on everything else quickly.
karen jacoby, ms canada ambassador, knows all there is to know about navigating the system after an ms diagnosis because she was diagnosed with the disease in january of 2020 and has gone through all the necessary channels to ensure that she is as supported as possible.
at first, she brushed off her symptoms, as did doctors, because of her age. then, in the summer of 2018, karen woke up with total paralysis on the right side of her body from her hip down and took herself to the emergency room. she was given a spinal mri because of a suspected case of ms, but when the results came back, her doctor told her she did not have it, and she was back to square one.
“i thought that’s kind of a relief, but i still don’t know what’s happening to me,” she said.
during the holiday season of 2019, karen was hit with urgent and critical symptoms that led her back to her family physician, where she requested an investigation of her brain to figure out what was going on. just after new year’s, she received the call that she had ms.
“i made three phone calls. one to my partner, one to my parents, and one to ms canada,” she said. “they all became my support system, and i started getting the resources that i needed in order to navigate my diagnosis.”
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with karen’s personal experience with finding what she needed to care for her ms, and her experience as an ms ambassador, she knows what it takes to navigate a healthcare system that, often times, doesn’t make it easy. she learned that, since everyone’s diagnosis is so different, their care pathways may look different, too.
but some things remain the same for everyone living with the chronic disease.
creating a care team for ms
a care team is a vital component of an ms journey. while everyone will require different levels of care, there are a few specialists who should be on the list to manage the multifaceted and multisymptomatic condition. for example, finding a neurologist that you trust is an excellent first step in creating a team of providers that can help you manage the disease.
for karen, finding a neurologist was easy. she was first sent to st. michael’s hospital in toronto, on, but soon after found herself at the barlo ms centre.
“i had a fantastic neurologist,” she said.
since ms causes numerous symptoms, having other healthcare providers on your team will help you address your disease from multiple angles. for example, physical medicine and rehabilitation specialists can help with physical challenges and function, whereas a psychologist or psychiatrist can ensure that you have the right tools to cope with the emotional and psychological changes that occur.
other potential specialists can include:
- urologists to help with bladder and bowel issues related to ms.
- social workers, who will connect you with resources and supports
- a neuro-ophthalmologist to address visual problems
- a dietitian or a nutritionist to aid in healthy eating
- an occupational therapist as a support in adapting to daily living changes
- a speech language pathologist to address difficulties with speaking or swallowing
- pain management providers to assess and manage pain
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karen’s team is composed of her neurologist, but there are many other people on her side to help her with her ms.
“i have a social worker because emotional well-being and health are instrumental to maintaining your resilience. i also have sought help from different physiotherapists that can help strengthen pelvic floor because, like i mentioned before, incontinence issues, and because i was misdiagnosed so often and i endured so many attacks,” said karen. “i also have a massage therapist because now that i am walking more often, you want to make sure you’re walking correctly.”
the providers you need to suit your specific case will work with you so that you can access the type of assistance you need when you need it.
advocating for yourself when facing barriers
there are numerous barriers to care when people develop ms. for karen, it was a missed diagnosis. however, other barriers, such as not having the finances to cover the costs associated with the disease, a lack of awareness and education surrounding the symptoms and care process, and systemic barriers, can all arise when navigating the system.
however, according to karen, it’s essential that, regardless of the barrier, you advocate for yourself. for example, if financial constraints are harming your ability to access care, you have to apply for and push for all the benefits that are available to you.
if it’s a lack of awareness and education, getting in touch with ms canada or other resources to learn more about the disease and its implications is the best course of action. the important thing is that if you feel as though you are not being heard, you have to speak louder.
“when you hit a barrier, you have to really advocate for yourself and push and push so that people will essentially hear you,” said karen. “to feel heard and seen and understood.”
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understanding treatments and the importance of timeliness
due to advances in medicine, there are many treatments available for people living with ms in canada. they include disease-modifying therapies (dmts) that are designed to slow the progression of the disease to reduce how often a person experiences symptoms and the severity of those symptoms.
others include corticosteroids that can hinder inflammation in the body to shorten how long a flare-up or relapse of ms occurs, and supportive therapies, such as:
- physical therapy
- occupational therapy
- psychiatric care
- complementary and alternative medicine to manage symptoms
these supportive therapies do not affect disease progression, but they can aid in improving overall well-being while a person lives with ms.
when it comes to when you should seek out therapy, it’s crucial that you first understand what’s available, but also that you are aware that the faster treatment starts, the better off you will be when dealing with an ms diagnosis.
when she was diagnosed, karen was living a healthy and active lifestyle and enjoying her career. but her symptoms caused her to lose her job, and her emotional and physical well-being took a hit.
while she had to wait a while for treatment, once she received it, her “life changed dramatically.”
“i’m walking and i’m thinking and i’m dreaming again,” she said. “in ways i never thought would be possible, because you wake up with full leg paralysis and you think, what’s the future going to look like for me? … because of the neurologist that supports me, i’ve been able to get a little piece of myself back, a little bit of my life back again.”
tapping into resources to create a support system for ms
because ms is so prevalent in canada, there is a plethora of available resources for people who have been recently diagnosed. they are all geared toward helping people navigate their new lives with the disease for the most optimal outcomes and quality of life.
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one of karen’s first calls was to ms canada, an organization that opened up the door for her to create a support system.
“they have some yoga, they have peer-to-peer support,” she said. “you connect differently with people who have similar experiences, you feel like somebody fully understands you. so, it’s really, really great to kind of champion each other and support each other, and whether newly diagnosed … or living with it for decades, there’s so much to learn and so many reasons to be very, very hopeful.”
karen notes that being involved with ms canada has been a “really great opportunity” for her to connect with others across the country, and the resources available there are accessible to everyone living with the chronic disease.
find hope in new research and strength in yourself
getting a diagnosis of ms can be an overwhelming and challenging thing to hear. it changes the way you see the rest of your life. however, a new diagnosis does not have to lead to hopelessness. new research continues to delve into the mechanisms behind ms, as well as how to treat it. over the past two decades, medical science has made significant progress.
according to karen, people recently diagnosed with ms should call on themselves to find hope in the people who continue to fight for better therapies.
“if i’m putting myself in a place of other people living with ms that i’ve spoken to, many of them were diagnosed decades ago. they were told that there’s no treatments available to them. they can’t have children,” she said. “today, we’re living in a place where there’s so many dmts available. there’s so much research and there’s so many resources. people didn’t know how to facilitate, how to help in the same way that we do now and how to support and connect with each other. i think it’s just very important to spread that message of hope.”
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karen also notes that it’s not always easy, but maintaining resilience and strength, and leaning on the positive changes that are happening in the medical world right now, will help you navigate the system and your life living with ms.
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