Talking about Relapsing Remitting Multiple Sclerosis Transcript

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Audio

On-Screen – Dr. Smyth

Dr. Penny Smyth
Neurologist and Associate Professor, University of Alberta and President, Canadian Network of MS Clinics


Dr. Smyth:
I think that an ideal partnership between a person living with MS and their neurologist and care team is really one of honesty and communication.

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Title: (Real Patients Speak Screen) Talking about Relapsing Remitting Multiple Sclerosis with Dr. Penny Smyth


Voice Over:
Today on Health & Family, we visit with Dr. Penny Smyth, a clinical neurologist and MS specialist to learn more about the role of effective collaboration between the patient and their care team within the RRMS journey.


On-Screen – Dr. Smyth




Canada has one of the highest rates of MS in the world – with over 90,000 people living with the disease.

There are various types of MS, but approximately 85-90% of people diagnosed with MS have the relapsing remitting form (or RRMS).

Most people with RRMS will eventually transition to secondary progressive MS (or SPMS).

Dr. Smyth:
Multiple sclerosis, or MS as we call it for short, is a disease of the central nervous system where there’s chronic inflammation that attacks parts of the brain, the spinal cord, and the nerves to the eyes. So, there are different types of MS.

The most common type of multiple sclerosis is what we call relapsing remitting multiple sclerosis. This is where people will get what we call attacks, or relapses.

In relapses, they’ll develop new or worsening of old symptoms, anywhere from days to weeks to months.
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Voice Over:
Sophie Berriault is 38 years old. She was diagnosed with RRMS in 2015.


On-Screen – Sophie Berriault

Sophie Berriault, 38 years old Diagnosed with RRMS in 2015

Symptoms of MS are unpredictable, vary greatly from person to person and can fluctuate within
the same person over time.

The most common symptoms of MS include:
• Fatigue
• Numbness and tingling
• Vision problems
• Weakness
• Poor coordination
• Bladder problems
• Mood changes
• Cognitive impairment

Sophie Berriault:
When I was diagnosed, my neurologist and I had a very important discussion about relapsing and progression aspects of my RRMS.

It was a hard discussion because the neurologist was explaining to me the nature of my condition.

I was experiencing some numbness from my feet to my torso, I was having some vision problems, hearing problems, my balance was off, so those symptoms were definitely all over the place and it was pretty concerning
On-Screen – Dr. Smyth
Dr. Smyth:
People with MS are the true experts about what MS is and how it can affect them. So, having some knowledge about what MS is, as a base, and then what options there might be in trying to optimize their lives can actually, I think, help them achieve the best lives that they can and to try to reach their personal goals.

And then, once they have that knowledge then they can look at the options that are available to them, and then they can make the best decisions for themselves going forward in trying to live the best lives that they want to have.

On-Screen – Sophie
Sophie Berriault:
I was under the impression that it was the end of my life. That all of the dreams, all of my expectations, all of my career goals were just thrown through the window.

Knowledge about your condition gives you a lot of power and gives you a feeling of control over something that feels like you have no control.

On-Screen – Dr. Smyth
Dr. Smyth:
I think that a strong collaboration and relationship is helpful between a person with MS and their neurologist and health care team, really around open communication, and ongoing dialogue.

And that means that we have regular check-ins as to how they’re doing, what they’re up to, what challenges that they’re facing. Then, we can look at how we can overcome those challenges in some way.

And if something is not working for them, then to convey to us what is not working and why. Then, we can try and figure out if there’s anything we can do about that.

On-Screen – Sophie
Sophie Berriault:
For me, a good partnership with your neurologist and the team that is taking care of you is based on communication and trust. Knowing that your neurologist is open to listen to what you have to say to them is extremely important.

It gives me the impression that I’m part of the decision process.

On-Screen – Dr. Smyth
Dr. Smyth:
It’s important for people newly diagnosed with MS to consider longer term goals in living with MS over a lifetime. So, I tell people that with MS, most people now, will live good, long, and healthy lives.

That we have really good strategies, where the course of MS can be really different for a person compared to say, how it was 20 or 30 years ago.

And, that if they have personal goals, it’s important to talk about what those might be so that we can work towards them in accomplishing those goals.

On-Screen – Sophie
Sophie Berriault:
The long-term goal I had when I was diagnosed with my RRMS, was to make sure that I slow down the progression as much as possible.

Tracking your symptoms is one of the most important things to help you and your neurologist to making sure that the progression of your RRMS is under control.

And the first thing is, to be aware of your body, to give yourself a lot of attention. Your body is a goldmine of information.

On-Screen – Dr. Smyth
Dr. Smyth:
Symptom tracking can be helpful in helping you monitor how your MS is affecting you, such as the fact that perhaps, maybe you have uncomfortable legs at a certain time of the night.

And then you can’t sleep. That you notice that as a pattern, and then that then gives you the power to communicate about that to your neurologist or your health care teams.

On-Screen – Sophie
Sophie Berriault:
Reporting the symptoms to your neurologist is extremely important no matter what the symptom is, as small or as big. All of this is extremely important information for the team that is taking care of you.

To make sure that I remember those symptoms I write it down.
So, when I have an appointment with my neurologist, we’re able, at that point, to discuss if those symptoms came back, if it was just a one off, and if there’s a reason to take those symptoms seriously or not.

On-Screen – Dr. Smyth
Dr. Smyth:
If something is not working well for a person with MS, then the rule is that they need to let me know about it and then we switch until we find the right option for them.

When I don’t hear from people, I assume that they’re doing okay. So, when they reach out and they’re not doing okay, then we can work and try and to change things, and that might be anything from their disease activity, their life circumstances, and their symptoms.

Now our goal as to what we’re trying to achieve with all of this, is this goal of NEDA, or no evidence of disease activity, so this is where we are trying to have them stable, not having clinical relapses of their MS over time, in addition to having no changes on their MRI over time.
That’s a goal that we try and work towards achieving.

On-Screen – Sophie
Sophie Berriault:
I feel like I have a full life with MS. I’m working full time in a job that I love. I’m pretty active. I do different sports. I have good friends.

So, my MS is there, it’s part of me. It does not define me.

On-Screen – Dr. Smyth
Dr. Smyth:
An important message that I would like to convey to people living with relapsing remitting MS is really, to have hope, to become educated about MS itself, so that you can make decisions that are right for you and that you are the expert around what MS is to you.

So, carry that power with you and conveying to your health care team around what you need and how we can support you.



To learn more about RRMS and to download a questionnaire to help track your symptoms, visit MyRules.ca.

Close-Screen RPS scrolling MyRules.ca
 
This segment was made possible through financial support from Novartis Pharmaceuticals Canada Inc.

Voice Over:
To learn more about RRMS and to download a questionnaire to help track your symptoms, visit MyRules.ca.