Multiple sclerosis can strike at a relatively young age and can lead to disability later in life. While not curable, it is treatable, and with the right combination of early diagnosis, expert intervention, and patient empowerment, people with MS can minimize their disease progression and delay the onset of disability. This month, MS Awareness Month, we hear from two members of the UConn Health Multiple Sclerosis Center. Dr. Jaime Imitola, director of the Division of Multiple Sclerosis and Neuroimmunology, and Karen Nelson, a nurse who serves as clinical patient navigator, describing how the MS Center at UConn Health coordinates elite care to change the trajectory of a patient’s life.
(Dr. Jaime Imitola, Karen Nelson, Carolyn Pennington, Chris DeFrancesco, March 2021)
Chris: Multiple sclerosis is a neurological disorder that can progress to the point of severe disability later in life, but prompt diagnosis and the expertise of an MS center can change the trajectory of the patient’s life.
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With Carolyn Pennington, I’m Chris DeFrancesco. Now for those with multiple sclerosis, managing their disease comes with its share of challenges.
Carolyn: MS typically strikes relatively young and tends to be more debilitating in minority populations. There’s no cure, but it can be managed, and the right interventions from the right people can make all the difference. And today we have two such people, Dr. Jaime Imitola, director of UConn Health’s Division of Multiple Sclerosis and Neuroimmunology, and Karen Nelson, clinical patient navigator in the Department of Neurology. Thank you both for joining us.
Karen Nelson: Thank you.
Dr. Imitola: Thank you.
Carolyn: Dr. Imitola, let’s start off with you, and maybe give us a little primer on what multiple sclerosis is for those who don’t know. What is actually happening in your body if you’ve been diagnosed with MS?
Dr. Imitola: Well, thank you for the invitation again. MS is an autoimmune disorder that affects primarily the central nervous system. And autoimmune means that your immune system recognizes and starts attacking the brain and the spinal cord. Usually it presents in patients that are young, between 18 to 40 years old, and affects predominantly women four-to-one compared to men. There are multiple clinical presentations, multiple symptoms, but there are described three things that can happen. You can have an attack in your vision, usually blindness, we call that optic neuritis and inflammation of the optic nerve that leads to blindness, usually it’s a temporary blindness with pain when you move your eyes. Patients can also present with something called transverse myelitis. That is inflammation on the spine and it’s manifested clinically by having issues with walking, suddenly patients having acute presentation that they cannot walk or they have trouble feeling their legs.
We also have another presentation that affects what we call the middle of the brain, the brain stem. That controls your face muscles, your ocular movements, and usually that presents with double vision. But we also have recognized that perhaps three to four years prior to that first presentation, patients might present something that collectively is called prodromal MS. And that is that patients will have multiple, not very clear symptoms. They usually go to the doctor for many reasons, especially the numbness and the fatigue, and then, three years in the future, they get like the first attack. So it’s actually clear that there is an episode or episodes that are not very clear-cut defined, but suggest that something’s up with your immune system,
Chris: Dr. Jaime Imitola, you’re the director of UConn. Health’s MS Center. You and I have spoken before about MS, and one thing that comes up is progression of the disease and the impact of identifying it earlier, so you can take steps to mitigate the disease’s progression. So talk about how an MS center is vital to that approach.
Dr. Imitola: It’s an excellent point, and thank you for bringing this up. We have learned over the last 30 years that we have to kind of shut down the disease process. It’s like a big fire in the brain, if you will, or a smoldering fire in the brain. And the reality is that we have multiple medications for MS. However, there is a disconnect between what we know as experts and what in reality happens. So there are still patients that are not diagnosed promptly. There are patients that are not treated promptly and there are patients that are not treated with the right medication. Therefore our goal in general with MS centers is to harmonize these conflicting things. So not only provide the expertise to accurately diagnose, treat, but also educate the patient to make the patient a great self-directed person, that the patients feel empowered to do things for themselves. And that’s what the MS center is. The MS center is a group of people, usually professionals that are multi-disciplinary, or interdisciplinary, right? So we have here, I think a total of 25 people that work independently, but make a community to work toward a single patient. So we have our own doctors, MS doctors, all the way to the physical therapies. So the idea of an MS center is to improve the way that patients are diagnosed, treated, and also that you’re empowered to actually take care of yourself.
Carolyn: Karen, you’re obviously a vital part of the MS center. Describe your role as a clinical patient navigator.
Karen Nelson: Well, my role as a clinical patient navigator in the MS center is, Dr. Imitola will see the patients, he’ll do the diagnosis. And then I come in and I ensure that the patients stay on track with therapies, treatments, labs. I’m what I like to refer to myself as the gatekeeper of the whole entourage of things that will happen. And especially with a newly diagnosed patient, they’ve all got a lot of questions, thoughts, concerns. They have a lot of questions that they are nervous or can’t think of to ask the physician when they’re sitting right in front of them being presented with the new diagnosis. And I offer them support. Give me a call back, go home, think about it, if you have questions that come up, let me know, and I’m happy to lead you down either direction of referring you to our MS website or on a lot of educational sites, the MS society has a lot of resources. And I actually make sure that they stay on target with follow-up appointments, they get their safety labs done. If they decide to do an infusion, which is a very good treatment for, especially, the MS patients, I make sure that they stay on track with those, and just be a resource to them at any time. For an example, there’s a young man who has been recently diagnosed. I think I spoke to him every week now, so far for like three or four weeks in a row, just because new things have come up, he’s got questions. He’s feeling like there’s new symptoms he’s feeling, he’s trying to distinguish and feel out, is this an MS symptom? Is this just a normal symptom? And I’m actually there with the physician by my side to help support these patients, especially in the early phases of being diagnosed.
Dr. Imitola: I think that this is an important point and I want to stress the issue of the work for newly diagnosed patients that Karen does, because the issue is this, I mean, you’re scared when you’re diagnosed with MS. And there are tons of questions and usually we take a lot of time explaining to patients, but there are multiple questions. So everything looks very fast and furious in the beginning. But then you go home and you go, “Oh, I forgot this question. I forgot this question. What happens with this? What’s happening?” So the patient comes back with multiple questions, and that’s why the first visit — and we explain to the patients, this is the most important visit the next probably three or four years, because you need to understand, we need to explain things to you in a matter that you can actually repeat to your family and understand what the disease is.
Karen Nelson: And also, we’re in the process of actually developing, for the new diagnosed patients or any patient who needs to have education, we’re in the process of developing a binder. So when they come in and the physician is explaining to them about their disease process and where their lesions are located, they can have a tangible, something to take their notes on, to write, to actually have to go home with and help let some of this information settle in.
Carolyn: And talking about treatment and patient care, Karen, can you talk a little bit more about the challenges and restrictions that patients have to deal with? I mean, it is a lifelong disease, it must be daunting all that they have to go through.
Karen Nelson: I tell the patients that when I speak to them at first, that the diagnosis of MS is not a death sentence by any choice of the words. It is something that you will have to incorporate into your life as something to manage. And with Dr. Imitola and his guidance and the therapies that are out there today, there’s a very long period of time you can go and pretty much be practically disease free as long as you continue to do your your infusions, your eat, well, get the proper rest, heed to all those, exercise, don’t smoke. If you could follow some of these guidelines that we provide for you, there can be a period of time where you’re feeling pretty good, and there’s really very limited disease process. And that’s why we also speak out to them and say, if you’re feeling anything, if have any questions, please reach out to us so that we can catch something sooner than later.
And we do have a social worker, Kristen, that, between her and I, we often have a lot of resources and things that we can offer people and support that they didn’t realize was out there, between infusion companies having copay programs, the MS society having programs for people in homes to keep them safe, things that are out there that they didn’t realize was available to them, let us be the ones to help you guide, walk you through those.
Carolyn: All right, Dr. Imitola, obviously COVID has had an impact on just about everybody, and how has it really impacted MS care?
Dr. Imitola: That’s a great question. Two things: One is that, it’s actually difficult to take care of patients during COVID, and COVID has added another source of frustration and questions for the patients, because in the beginning, there was this idea that these “patients are immunosuppressed” and they may have an increased risk of for COVID-19. Fortunately, together at our team level, we have doneÂ great work to facilitate this educational piece for the patients. So Marina Creed, who is not here, that is our nurse practitioner, together with the chairman of the department, myself and others, we put together guidelines for our patients, not only for MS, but also other neurological disorders. And then, the MS Society, that we work very closely with for the last several years, we’ll say, put together registries, and the registries basically support the notion that MS patients are not at any different risks than the normal population in terms of getting COVID-19. However, the risk is actually seen in patients with progressive MS, that we see a lot, and patients that are African-Americans and Latinos, that we see a lot, and patients that are not on medication, that we see a lot, and patients with comorbidities, that we see a lot. So that took a great relevance to us. And then, I was asked to participate with the MS Society recently to establish guidelines for the vaccines in MS patients. And we have now three guidelines: one general guidelines, the second, the timing of the medications, and third, we put together a bunch of questions that providers might have, and they are directed to the MS society website for those questions. So in general, it has been aÂ challenge, but, we have collectively worked as a team and we are helping people. Probably we were one of the few people that actually closed clinics because we invested all the time trying to make sure that some patients could come to clinics that were safe to come to clinic. We talk to a lot of patients about the timing of the vaccine and the infusions, that’s a lot of work that we do. Actually UConn Health has very powerful, very strong preventive measures to get here. There are very many places where you don’t follow the guidelines. We actually have extra guidelines. We ask patients to get a COVID-19 test, a PCR test, to come to clinic and even before to get the infusion. So, I mean, we have done a lot. It’s a lot of work over the last year and I think that it’s going well. I think that collectively, all the people that we work with in the team have put a lot of effort. Actually, this is the power of nursing. We have Kim Fofana, that is one of our nurses, Marina Creed, that is the nurse practitioner, and nurse navigator, Karen Nelson. So these are very structured people that have done this work over the last year.
Karen Nelson: And I just wanted to point out too, that a great thing about our program here at UConn too, is the infusion center is directly above us one floor, and I work very closely with all the nurses and the MAs and the COA that sits up there, Kim who answers all the phone calls for the infusion center. Her and I are in constant conversation and making sure that all the patients get what they need in a timely fashion, and that we make schedules and appointments happen for patients quickly and efficiently and safely. And so the infusion center is a great asset to have right above us in that it really makes our flow nice and comfortable for the patients.
Chris: One of many examples of just the advantage of having a collaborative, multiple sclerosis center, such as what we have here at UConn Health. So we’d like to thank Karen Nelson, the clinical patient navigator from the Department of Neurology, and Dr. Jaime Imitola, the director of UConn Health’s Division of Multiple Sclerosis and Neuroimmunology. Thank you so much for spending some time with us today to talk about what you’re doing over at the MS center.
Dr. Imitola: Thank you for the invitation.
Karen Nelson: Thank you for having us.
Chris: That is our time for today. And for Dr. Jaime Imitola, Karen Nelson and Carolyn Pennington, I’m Chris DeFrancesco. Thank you for listening to the UConn Health Pulse. Now be sure to subscribe, so you can catch us next time, and please share with a friend.