Multiple Sclerosis is a complex disease that can take a long time to diagnose and may present with a multitude of symptoms - explaining why it is sometimes referred to as "The disease with a thousand faces."
Multiple Sclerosis is a complex disease that can take a long time to diagnose and may present with a multitude of symptoms - explaining why it is sometimes referred to as "The disease with a thousand faces." In this Listen Well episode, host Dr. Mo Alsuwaidan delves into the patient experience from the onset of symptoms, when anxiety can often set in prior to accurate identification, to reaching diagnosis and beyond. To shed further light on the subject, he speaks with Piet Eelen, a clinical nurse specialist in Multiple Sclerosis working at the National Multiple Sclerosis Center in Belgium, and with advocate Federica Balzani, who lives herself with the condition while serving as VP of the European Multiple Sclerosis Platform (EMSP).
Disclaimer: This podcast is provided for educational purposes and is not intended to replace discussions with your healthcare provider. All decisions regarding your care must be made with a healthcare professional, considering the unique characteristics of your personal situation. The opinions expressed are the opinions of the individuals recorded and not the opinions of Viatris. Individuals featured in this podcast may have participated in the past as or may be current members of an advisory group for Viatris.
Dr Mo:
Welcome back to Listen Well. I'm Dr. Mo Alsuwaidan. In today's episode, we'll be talking about an illness that often remains a mystery for a long while until it's accurately diagnosed. It's a disease that presents with a multitude of symptoms and has been called "The disease with a hundred faces." Patients often suffer from anxiety from the time between the onset of symptoms until it's accurately diagnosed. I'm talking about Multiple sclerosis, or MS. On today's episode, we have two experts by experience around MS.
Miss Federica Balzani is Vice President of the European Multiple Sclerosis Platform EMSP, which represents MS Societies from across Europe. She also has 15 years of experience with A-I-S-M, the Italian MS Society. Being a person with MS, Federica is particularly dedicated to the common cause of joining forces between people with MS and MS organizations to achieve positive change.
Mr. Piet Eelen is a clinical nurse specialist in Multiple sclerosis working at the National Multiple Sclerosis Center in Belgium. He's been guiding and supporting persons with MS in his clinical practice with a special focus on chronic disease management and lifestyle factors. He also organizes courses for nurses to stimulate development and education. Welcome both to the program.
Dr. Mo:
So thank you both for being with us today. Federica, let me start with a question for you. What is MS, from your perspective, from a patient perspective? Can you explain it in simple language for our listeners?
Federica:
Of course. From a patient perspective, MS can mean several things. It can be described with a feeling such as fear, sadness, frustration, challenge, but also relief after a long journey of diagnosis. And it can be pictured as something that breaks the normal chain of events, as something that breaks and is no longer able to protect you. MS has also different meanings for a patient, as MS has a thousand faces is different from a person to person and therefore can mean different things.
It can also have different meanings depending on the moment. A person’s life is made up of different moments and MS has different meanings depending on each moment. But in my personal experience multiple sclerosis has several meanings, but one of them remains constant during my life, the unknown, the fear that something will happen without knowing how and without knowing when it will manifest itself. I'm a person living with MS since 2007, and MS is a constant presence, latent, even if I consider myself lucky. As for now, I have not had major relapses, MS has change myself. I see my life in a different way with more philosophy, taking advantage of all the opportunities that are offered to me. This is a positive aspect I think that has changed my life and my perspective. And so I try to not limit myself.
Dr Mo:
I think that's very powerful. And you talked about a lot of the personal experience, not just at the symptom level. If I can follow up with Piet, can you go more into depth around the perspective from a clinical world, from nursing? What does MS mean and can you explain it to our listeners?
Piet:
Thank you for the question Dr. Mo., In fact, maybe I can just start to say that MS is a disease of the central nervous system. So that's the brain and the spinal cord. It's an autoimmune disease and that means that due to an unknown reason, the body will react against the body's own cells more specific to the myelin in the central nervous system. And MS is also a chronic disease, which means that it's something that cannot be cured and often goes in a progressive course, which means that symptoms, complaints, and problems can increase progressively. And if we see a little more the prevalence of MS in the world that we can say it's the most common non congenital disease of the central nervous system. And in young adults, it is the second leading cause to neurological disability, after brain injury. In Europe, around 650,000 persons are living with MS and worldwide it's 2.5 to 3 million.
First symptoms occur often between the age of 20 and 45, which means it has a tremendous impact as this is often the most productive and social state is developing phase of their life. Unfortunately, there is a high labor market dropout. Some studies showed that 10 years after diagnosis, up to 75% of people living with MS stopped working. And finally, we can say that not only persons living with MS are affected, but also their relatives and caregivers are impacted. So in Europe there are more than 1 million people who are living with or with someone, with MS.
Dr Mo:
I think the way you summarized it is very important because you mentioned what's happening at the cellular level and then all the way up to what's happening in a person's life. Can I take you back just to the cellular level for a second? You mentioned that the body's attacking myelin, so can we explain what that is for the listeners?
Piet:
Yeah, well, due to an unknown reason, the body itself will react against the myelin in the central nervous system. Some lymphocytes who are, I call it always not well programmed, will pass the brain blood barrier, go through into the central nervous system and will attack the myelin. And at that moment we are talking about a relapse or an inflammation, and that's one of the two processes that are going on in MS. You have inflammation and after you have the degeneration of the disease.
Dr Mo:
And so it's eating away at this sheath, the myelin sheath covering the brain cells.
Piet:
Covering the neurons in fact that are transferring the signals from the brain to all the limbs and to all the organs.
Dr Mo:
So what are the symptoms that a person would experience?
Piet:
MS is a very heterogeneous disease. That manifests itself in different clinical forms. In most people living with MS, 85%, it starts with a relapsing-remitting pattern, in which relapses of neurological disorders alternate with periods of recovery and relative stability. About half of these patients progress to a secondary progressive phase over time with a more gradual neurological decline and with less or no relapses. 15% of all patients have a primary progressive disease pattern from the start. So, as you were asking about the symptoms, well MS can lead to unpredictable and diverse neurological disorders. Often the disease starts with an optic neuritis, but other common symptoms include motor and sensory disturbances, coordination problems, difficulty in swallowing or speech and visual problems, but also invisible complaints such as bladder, bowel or sexual disorders, pain, fatigue, depression, cognitive and emotional problems.
Dr Mo:
So it's really all aspects of the brain can be affected because you talked about the special senses like vision starting with optic neuritis. So this inflammation of that main nerve going to the eye and someone can have partial blindness for a while or visual disturbances to the other senses to the movement, but also to aspects like cognition and emotion. So that's really so many different ways this disease can present.
Piet:
As we say, everything in the body is controlled or coordinated by the central nervous system. And as MS is a disease of the central nervous system, every aspect of it can be affected.
Dr Mo:
So if I can come back to you, Federica we heard about the symptoms of MS the statistics and that's all very important, but I'm wondering what it was like for you as a personal experience. What was that journey like from having symptoms and figuring out what's going on and getting care and dealing with the diagnosis? Can you walk us through your story?
Federica:
Yes, of course. The first aspect I would like to share with you is the uncertainty of MS and of the diagnosis. Because in my experience, the uncertainty of the diagnosis continued for more than one year. I had my first acute episode in which importance symptoms appeared such as, asthenia, electric shocks,sensitivity in the limbs, tingling. After more than one year, I received the diagnosis of MS. It was a long period of constant checks, MRI every four months, some soft symptoms also returned, and during this period such as lack of sensitivity and tingling in my hands. But the diagnosis didn't come.
I received the diagnosis after more than one year, after some small new lesions. In my experience, the moment of the diagnosis was like a relief. After a long period of uncertainty, I was able to give a name to something that I had. After this first period, first moment, I had the constant fear of the uncertainty, of course, about how the disease will evolve because this aspect of the uncertainty is constant in MS. You could have many symptoms; you could have a progression of MS, so this is a constant aspect in my life.
Dr Mo:
I think it's quite interesting to hear that receiving the diagnosis comes as a relief, but it makes sense because you're going through this whole year where you don't know what's going on and you're getting all these tests and you're looking for an answer from the doctors. After that initial relief, how do you go from there to accepting that uncertainty, to being able to move on with your life and do the things you want to do in your life while that uncertainty is still there?
Federica:
The acceptance is not an easy process, in my opinion. In general, it is not a certain goal for everyone as it is not certain that all people with MS will reach it. In my experience, I figure out all the possible scenarios, a stable MS, a progression, the use of a medical device or a wheelchair. I also saw the examples of some people living with MS who despite their MS carried out important life projects, and challenged the disease. This exercise helped me. In my experience, it was also probably easier to accept a diagnosis in the absence of symptoms because this was my situation in that period. So I think that watching the examples of people living with MS helped me in this process of acceptance of MS.
Dr Mo:
Yeah, because as Piet mentioned earlier, a lot of people go through this same journey. Maybe I can come back to you, Piet. You see a lot of patients. What is it like for them? Are their journeys similar to what Federica described?
Piet:
That's an interesting one. Now, I think every journey is different. Of course, symptoms can differ also the same structures that are attacked, but every person with MS is different. We also talk about the 1000 faces of MS, and as MS is really a complex and heterogeneous disease, which presents itself often on a different way, it's different from person to person and well, due to the diversity of the symptoms. And also, Federica also mentioned the unpredictability of the occurrence of the symptoms. And that's why MS is not only one of the most difficult neurological disorders to treat, but it also quite complicated to come to a good and false diagnosis.
Dr Mo:
Federica spoke a bit about acceptance. And for you, Piet, what kind of connections between acceptance, and then patients moving to lifestyles that may in turn benefit their recovery, a healthy lifestyle? What kind of things should people be doing as they go into this acceptance and disease management phase from a lifestyle perspective?
Piet:
Well, that's really a difficult step. Only if one accepts the condition where you're living in as being part of yourself, you can start working on it, I think. We have to give as much information as possible, links, things to read, see the patient on a regular basis and check with a patient if there are some new questions. For persons with MS, I think there are several topics that we can discuss with a patient, from food intake to stop smoking, sleep, hygiene, energy management, and so on.
Another thing that I like to mention here, from the start, it's important, finally, you have to give the strength to the patient, or the patient has to have the strength to go on with his life. Okay, you have MS, and now we go on with life, and we go on with my plans. And maybe we have to take into account some major things, but you have to go on with your life and you have to give the strength to the patient that they can go on with their life. One thing that I'm talking quite in a fast way with a patient is prehabilitation. So, it means rehabilitation before you need physiotherapy and so on. And I find it a nice term, prehabilitation instead of rehabilitation, working on prevention.
Dr. Mo:
Preventing something before it happens.
Midroll:
My name's Pat Vallano. I am head of Innovative Programs R&D at Viatris. I'vebeen in the industry over 30 years now. I work on a variety of different development projects, generics, innovative, as well as third-party collaborations.
We have a long history of developing multiple sclerosis therapies for at least 15-years, if not longer.
I had an opportunity at the end of last year to sit and spend some time with a multiple sclerosis patient and a patient advocate, actually. He's about my age, was diagnosed with multiple sclerosis back in the early '90s. At that time, of course, there were just a handful of therapies available and we talked about that.
And how he has seen over the last 30 years that the number of therapies increase, the number of treatment options, and just how that means so much to patients. I found the experience with him just humbling and inspiring, just really to see how much of a difference new treatment options, advances, make for the patient's day-to-day existence. It's just so easy when you're working and doing what you have to do to lose sight of that. It just was so very inspiring.
I just can't emphasize enough how very important it is to stay connected as a pharma company who has great potential to make these improvements for patients, to stay connected with what the patients see as lacking. It's the reason that we are here doing what we do every day.
Dr Mo:
So Federica, how has MS affected your life in terms of lifestyle? What sort of challenges have been there? And how have you adapted?
Federica:
I think that, in general, it is possible that a person with MS has to reshape her or his lifestyle, especially if there is a progression of the disease with a strong disability. A person with MS, like me, every time could be in front of some difficult situation or choices. For example, will I be able to work? Do I need to tell my boss? How do I tell my boss? Or other question for the social life, like, will I be able to be normal with my partner or friends or for family planning? Can I have children? Will my children also have MS? The presence of an MS society, as well as the presence of a prepared multidisciplinary team of healthcare professionals are very important to support people in their choices, providing the right information, of course, organizing peer support group, et cetera.
I didn't have to do many changes in my life because, I'm lucky because I don’t have so many symptoms. So, in this moment, I know that I can do all the things I did before, but I think every day in my life about these questions that I shared with you.
Dr Mo:
Piet, with the patients you've worked with, when they ask themselves these questions, how do you help them reflect? And what kind of decisions do they come to about coming out with their illness to work, for family planning, issues like that?
Piet:
Well, I'm lucky I'm working in a rehabilitation center for multiple sclerosis, and so we have a whole team behind us. I think it's important that, first of all, we have to point out that the center of the whole system is the patient or the person living with MS himself or herself. But then, it's good to have an MS care unit around the person who is living with MS. And at certain points, different players can be asked to give their support, their care, their advice. Being an MS nurse, I think we are really, together with a neurologist, the first one who comes in contact with a person who is living with MS. And as we all know, if a patient gets a diagnosis of MS, and you are in the office of a doctor, it's quite difficult to remember everything when you're coming out. And then having the opportunity to go to the office of the MS nurse and talk it over again and having really a contact point with the MS nurse is tremendously, tremendously important. So, I think that we have to go through everything with the patient again. What are your questions? How can we support you? And then of course, linking on the right moment to the right person to give the adapted professional support, concerning work, concerning energy management, concerning mobility, AIDS, or something else.
Dr Mo:
Right. I think the term support is so important. So many times in this podcast we've talked about patients with different healthcare issues really emphasizing that you're not alone. And so Fedrica, can I come back to you and ask you about some of the support that has been available to you from the community and from family? Can you use some examples of your experience with that?
Federica:
I think that there are different types of support for people living with MS. Neurologists/doctors, who are patients' first stakeholders who should be able to ensure a multidisciplinary approach for the disease, and is able to reassure the patient from the diagnosis. The family, the social context, and the MS societies. I take the example of AISM (Associazione Italiana Sclerosi Multipla), my Italian MS society. AISM works at 360 degrees for MS. This mean that AISM is the reference point for all the people living with MS and MSD (musculoskeletal disorders) in Italy. It provides information on the disease and it's management. For example, treatments, social care information, loss information.
In AISM, we have a network of lawyers, social workers, neurologists who respond to every request through our toll-free number, and thanks to our 100 local branches across Italy. AISM advocates at different levels, national and local, and provides the opportunities for peer meetings between people living with MS. I think that this is very important. This was my first question to my MS society, having the opportunity to meet the other young people living with MS, and AISM provides these meetings. And it also organizes mobility support, wellness activities, psychological support. It has also a network of professionals and they organize training courses for healthcare professionals. So, I think that it is very important to find a well-structured organization able to respond to any type of need.
Dr Mo:
It sounds like they're doing a really amazing job. Piet, can you expand on some of the support offered from healthcare professionals? Any other organizations you're aware of or have worked with?
Piet:
I think in different countries, it'll be organized a little bit different. I see that mostly, there are not that much rehabilitation centers in Europe as we have here in our center here in Melsbroek, in Belgium. The healthcare support is given, first of all, by neurologists and MS nurses, and then also by the societies, which have really good work in every different country, like Federica already explained about the work of AISM in Italy. In the UK we have MS Trust. In Belgium, we have the leagues. And in every country, like in Germany, France, and every country in Europe, there are really good working MS societies on a different level. Not that many rehabilitation centers, as I mentioned already, do exist, but some of the MS centers in general or in university hospitals are really convinced of the MS care units and are working with multidisciplinary teams supporting the patient on an ambulatory, or even in an indoor setting.
In our center, for example, we have both. It has a tremendous impact to have really a period of three to six weeks that you are just focusing on your problems and thinking of yourself and of your rehabilitation.
Dr Mo:
That's great. So Federica, there's this platform called the European Multiple Sclerosis Platform, EMSP. Can you tell us more about this organization and the work that they do?
Federica:
Of course, the European Multiple Sclerosis Platform is very active, is a pan European umbrella organization working with member organizations from 37 countries. We aim to ensure that the more than 1 million people affected by MS in Europe have a real voice in determining their own priorities. We represent the national societies at the European level. Some of our work includes advocacy and awareness raising campaigns to influence European decision makers and EU policy makers, gathering data and providing knowledge and expertise to relevance stakeholders, encouraging high quality research, and the dissemination of excellent evidence-based information on MS. EMSP drives MS Nurse PRO, the first online foundation educational program for nurses working in the field of multiple sclerosis. The MS nurse is key in the provision of expert and consistent information, support and advice for people living with MS. From the moment of diagnosis and throughout the disease trajectory, the nurse ensures a shared and coordinated approach to care. And across Europe, the role, skill set, and professional development of MS nurses varies.
Federica:
I also would like to share our experience in Italy, because we have a network of healthcare professionals, so important, of course, for people living with MS. And the name of this network is SISM, Sclerosis Nursing Society. And it promotes and increases the professionalism of nurses who work with people living with MS since 2003.
Dr Mo:
That's amazing. It's so important to have that awareness building. One of the things I've realized in working in mental health is that if we don't promote awareness at the societal level, we don't have better health literacy amongst patients and supporters of patients. But, as you said, decisions are made at the government level and if there's no awareness, then the right decisions that help patients and their families are not made, just because of the lack of knowledge. Coming back to Piet, what about the work of this other excellent organization, MS Nurse Pro? Can you tell us about this organization and what they do?
Piet:
Well, Federica mentioned already, that MS Nurse Pro is the E-learning platform for nurses that is owned by EMSP. EMSP did several questionnaires among European nurses and MS nurses, MS nurse associations, concerning the level of education of nurses concerning multiple sclerosis. And that was the basis, in fact, of elaborating the foundation course which is offered on that platform MS Nurse Pro.
It consists of six modules. The first one is understanding MS. Then we have a module on clinical presentations. Diagnosis and assessment. A module on treatment, which is in review at this moment. A fifth one on care and support, a sixth on rehabilitation in MS. And soon the seventh one, on nursing research in MS, will be published.
We have these interactive courses that focus on information and education of nurses who are working with persons living with MS. At this point, nearly 8,000 users are registered in the MS Nurse Pro platform. And it's available in 13 languages. Recently, we launched it in Hungarian, and probably the future some other languages will follow. Some of the users of our platform are also persons or patients living with MS themselves. They often go to course one, understanding MS. It's the most basic course. So, they can understand what is MS, in fact, and how will it impact their life.
These modules, they finally lead to a test or an exam, and that will lead to a certification or an accreditation. And at this point, for example, at the University of Birmingham in the UK, these modules are already accepted and can be followed by students in medicine or in nursing. And for the moment we are working on the acceptance in the educational programs for nurses in Germany, France, Italy, Spain, and so on. Besides that, we have a communication building around the MS Nurse Pro, to facilitate contacting each other and nurses from around Europe.
Dr Mo:
And I find it really amazing that part where you said that even patients find it useful. So, I think one of the things I've seen working in clinical care is that patients sometimes feel isolated and not feel like they understand what's going on in the clinical world from the clinician perspective. So, that connecting of bridges is also, I think, really vital.
Dr Mo:
That brings me to the last part of the podcast. Let me start with Federica. What kind of message do you want people listening to this episode today to come out with? If you want them to take one thing and learn it really well.
Federica:
Live your life beyond multiple sclerosis, of course. This is my message for all the people living with MS. Live your life.
Dr Mo:
So, you are not your disease. It doesn't define you.
Federica:
With or without your disease, but you have to challenge them.
Dr Mo:
Right. Piet, any words of wisdom from your side?
Piet:
Well, I think it's quite important that we have the capacity to empower the people to live with their MS and go on with their life, like Federica told us already so beautifully. That's really the thing that is most important for the patient. And the most important thing for the healthcare professional is empowerment of the person living with MS. Empowerment is self-management, let's say.
Dr Mo:
And I find empowerment comes from knowledge. And so hopefully listeners today come out from this episode with some knowledge around symptoms, around the spread of this disease, about the challenges, and also about the resources that can help them, and that they feel that they're supported and not alone. Thank you both so much for joining us. Really, a wealth of knowledge in this episode. And I hope it's been useful to everyone listening.
Piet:
You're welcome. Thank you.
Federica:
You're welcome. Thanks.
Dr. Mo:
We've talked about so many important issues that have to do with diagnosing and treating MS in today's episode. I think one of the most important things we touched on is that help is out there and you're not alone.
It's as important to adopt a healthy lifestyle as it is to seek medical treatment. And because this is a chronic illness where symptoms come and go over time for most people, it's important to have networks of support around you. This includes your family and friends, but also professional societies and societies of patients, as we talked about. And these societies exist in regions across the world. Reach out to your family, your loved ones, and your healthcare professionals.
And remember, when it comes to getting the accurate healthcare information that you need, always speak up and listen well.