Clinic offers comprehensive approach to treating multiple sclerosis

Host Amber Smith: Upstate Medical University in Syracuse, New York, invites you to be "The Informed Patient" with the podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith.

Upstate Medical University now offers a comprehensive MS clinic for patients with multiple sclerosis, which is estimated to affect more than a million Americans. Here to tell us more about it is Dr. Kim Laxton. She's an assistant professor of neurology at Upstate who cares for patients who have multiple sclerosis.

Welcome to "The Informed Patient," Dr. Laxton.

Kim Laxton, MD: Hi, thank you for having me.

Host Amber Smith: I'm anxious to hear how the comprehensive MS clinic works. Can you walk us through what a new patient might experience?

Kim Laxton, MD: We take patients at every step of their MS journey. some come to us with a pre-established diagnosis, and others are experiencing symptoms for the first time and are searching for an answer. So the first appointment, you might be meeting with myself or a colleague like Dr. Corey McGraw, Upstate's fellowship-trained MS neurologists, and our goal at the first appointment really is just to get to know you, the symptoms you've been experiencing, review testing you've completed, perform physical exams to detect possible signs of damage from MS lesions, like looking at your reflexes or your strength, how you're feeling sensations, and your vision.

If we're starting at the very beginning of someone's MS journey, we're really putting together a puzzle, trying to gather all those evidence pieces to look for a diagnosis or to rule one out. So we may need to fill in pieces of that puzzle after meeting you, which can can include lab work, which we can obtain on the very first day, of your visit, MRIs, to look at different aspects of the brain and spine, or to set up other procedures to help us figure out what's been going on.

Host Amber Smith: So there could be some testing, some medical imaging, you said the MRI, maybe some blood work and other things that help you arrive at a diagnosis.

But if I understand you correctly, some of your patients who come here for the first time, they may hear the word multiple sclerosis for the first time in your office.

So how do you typically describe what the disease is to someone who's newly diagnosed?

Kim Laxton, MD: Exactly. So multiple sclerosis itself, it's a chronic, ongoing and complex disease, where your body's own immune system mistakenly attacks itself. So this whole process is known as an autoimmune response. With MS, the immune system attacks and damages fatty material, which is known as myelin, that insulates the nerves of the central nervous system. And the central nervous system consists of your brain, your spinal cord and your optic nerves, or the nerves that go from the brain to your eyeballs.

The damage to the myelin is known as demyelination, and this causes inflammation and scarring. So multiple sclerosis itself means many scars, and these are the scars that they're referring to. Healthy myelin, this fatty covering, acts similar to a covering on an electrical cord. It protects the nerves and allows them to transmit impulses or messages quickly and effectively.

And when there's scars that are happening, you might also hear us call them plaques or lesions, they affect the nerves' innate ability to transmit these messages between the brain and other parts of the body. So this interruption of communication causes unpredictable symptoms that we see in MS, such as the numbness, tingling, weakness, memory problems, vision loss, even fatigue.

Everyone's experience is going to be different with MS, and these losses themselves can be temporary. They can be intermittent or can be long-lasting. But our goal is to halt overall the breakdown of this myelin, and that's where we go into the treatments.

Host Amber Smith: Do we understand what causes multiple sclerosis? This is an autoimmune disorder, you said, but what makes it happen?

Kim Laxton, MD: We don't have an exact kind of cause for MS, but we do know the players that are involved in the game. It's caused by the immune system, which mistakenly attacks the brain and nerves. The components of this immune system include two really important cell lines.

You have your T cells and your B cells. So, T cells, they get activated in the drainage system of your body called the lymphatic system. And in MS, they enter into the blood, into the CNS (central nervous system), the brain and the spinal cord, things like that. And once there, they release a bunch of chemicals that cause inflammation and damage to the myelin and the cells that help make the myelin.

Normally you have other cells that help dampen this response, other T regulatory cells, but this is downregulated or doesn't work as well in patients with MS. T cells also go on to affect other cells, like B cells. So I mentioned two cells, B and T cells. These B cells normally help produce antibodies and stimulate other proteins.

And these also go haywire in MS and contribute to the problem. So, it's not clear why this happens, but it seems to be a combination of triggering this, and then other factors, as well, which can be environmental or genetic, things along those lines.

Host Amber Smith: You mentioned genetic. Is it hereditary? If a relative of mine had the disease, does that mean I may be more prone to it?

Kim Laxton, MD: MS is not an inherited disease, meaning it's not a disease passed down from one generation to another. However, there is a genetic risk that can be inherited. So, example, in the general population, let's say the risk for developing MS is about one in a thousand or so. In twin studies, that risk can be elevated to as much to one in four.

And the risk of developing MS in a first -degree relative that has MS, so like a parent, a sibling or a child, it's far less than identical twins, but more than the general public. So there definitely is a contributing factor there.

Host Amber Smith: Well, Dr. Laxton, is it true that you have a personal connection to this disease?

Kim Laxton, MD: Yes, very much so. My mom was diagnosed with MS when I was a young girl, and like many of our patients, she was scared and confused when she started developing these symptoms, since they're very disparate at times and unexplainable. I had accompanied her to many of her doctor appointments and really appreciated how the neurologist took what felt like chaos and distilled it into a diagnosis.

Back in those days, there were a lot less treatment options, a lot less known about the conditions. So having that support with her was really appreciated. I think living through all those stages not only inspired me to help others through this process but gave me insights into aspects of the MS journey that not maybe all physicians have. and I really see how important family and friend support can be through all this time.

Host Amber Smith: Is that why you decided to become a doctor? And is that why you chose this particular specialty?

Kim Laxton, MD: It's definitely a lot of what drove me to continue practicing. The journey to becoming a doctor is a really long one. And that in the background really helped inspire and drive me through all those years.

Host Amber Smith: I know you were young when this was happening, but how did your mom find out that she had multiple sclerosis?

Kim Laxton, MD: The first symptom she had was numbness that occurred one night. It was, Halloween. We were out walking for a really long time and she started developing numbness on the left side of her body. She didn't know where it came from. And like many of our patients, she was hoping she'd go to bed and it would get better the next day. And unfortunately, that didn't happen, and after prompting from family and friends, eventually reached out to her family doctor, who would sent her to a neurologist, where the diagnosis was made.

Host Amber Smith: You're listening to Upstate's "The Informed Patient" podcast. I'm your host, Amber Smith, and I'm talking with Dr. Kim Laxton. She's an assistant professor of neurology at Upstate caring for people who have multiple sclerosis.

I wanted to talk with you about how people typically learn they have MS. Before the break, you mentioned that your mother had numbness and tingling, and that's a typical way that it comes to people's knowledge, but what age are they usually when this happens?

Kim Laxton, MD: So, there's not necessarily, a typical age or a typical patient that can have MS. It can happen to anyone, but we do seem to find that it affects younger patients, in their 20s and 30s, and classically women.

Host Amber Smith: And the typical symptom is numbness and tingling.

Kim Laxton, MD: So, the events leading up to the diagnosis are unique in each person. but they can include things like numbness, tingling, weakness, vision loss or balance concerns. Those are the more common presentations.

Host Amber Smith: So, vision loss -- this person may end up at an ophthalmologist's office before they come to see you, right?

Kim Laxton, MD: Exactly. So a lot of our referrals come from either primary care providers or ophthalmologists with patients coming in with sudden-onset vision loss, or even insidious darkening of their vision, typically in one eye.

Host Amber Smith: Does multiple sclerosis get mistaken for other diseases?

Kim Laxton, MD: It definitely can. These symptoms can be seemingly random to certain providers. They can come and go, and they can be mistaken quite often for things like headache disorders or different pain disorders, ruling out compression neuropathies.

So when a nerve can get caught, I think most people might think of carpal tunnel, things like that, can lead to numbness and in a younger patient population that might be something someone might easily think of or might want to rule out first.

Host Amber Smith: What sort of an outlook would you give to someone who's newly diagnosed today?

Kim Laxton, MD: I would say medicine has come a long way since the early 1990s, that was back when we only had a handful of treatments available. they were mainly injections,the interferons, glatiramer acetate. These are type of medications that we really only had when we first started. It was not uncommon, unfortunately, to see MS patients in wheelchairs as their disease progressed.

However, now we have over 17 different treatments that range from those injections to oral medications and infusions. The field is constantly growing and we're learning more and more about MS every day. So while we don't have a cure, we do have many more resources than we did in the past. And while it is a chronic condition that is going be with you your whole life, your MS team is also there with you that whole way.

Host Amber Smith: Why is it that MS in one person can be so different from what the disease is like in another person?

Kim Laxton, MD: Demyelination can occur anywhere in the central nervous system.

And for this reason, everyone's experience with MS is unique. One individual may have a lesion that is affecting, let's say, the sensory aspect on one side of their body. And another one might have a part of the brain that controls motor strength. So everyone can present with different symptoms, and not everyone can have the same types of symptoms.

To add to that there are different types of MS, and each one of these has different ways that the disease can progress or change throughout the person's life. You have relapsing forms, which are the most common, where you have discrete periods of time where you'll have new symptoms, and then those symptoms can disappear or slightly linger. That's a relapsing remitting course. So you have symptoms, they may go away, and you have periods of time where you may not have symptoms.

Other patients have progressive forms, and these entail where you have a condition or a symptom that comes on, and it can progressively and continually worsen from when the initial attack comes on. And that's more rare, maybe about 10% of the population, but that happens as well.

So there's a wide spectrum of symptoms you can have, but not only that, but also the course that the disease can take.

Host Amber Smith: So, it sounds like there's not a typical course that everyone follows, but are there symptoms or experiences that are universal among people with MS?

Kim Laxton, MD: Not really. One person may only have one symptom their entire course of MS. They may only have one attack, and that's the only symptom they may have. And that's not necessarily universal from every single person. So each case of MS is unique in that way.

Host Amber Smith: Does having MS increase a person's risk for other neurological diseases or medical conditions?

Kim Laxton, MD: Since multiple sclerosis is an autoimmune condition, we do see some overlap in other autoimmune diseases in some of our patients. Those things can include things like diabetes, thyroid disease or inflammatory bowel disease, so other autoimmune conditions can come together, they flock together.

But we also see other coexisting medical conditions. There's an increased risk of cardiovascular disease that we've found with MS patients. So it's even more important to abstain from things like smoking, or to quit as early as you can, working with your primary care to manage blood pressure and cholesterol, and strive for overall healthy eating habits and exercise. Which are good for MS, but also lowering your risk for associated cardiovascular diseases.

Host Amber Smith: Without a cure for MS, what does the comprehensive MS clinic offer in terms of care? How do you take care of these patients?

Kim Laxton, MD: As part of comprehensive care, we're going to help establish other ways to go through your journey with MS than just the disease itself.

So is there things like coping and adapting to MS and other things that it can bring about? You have, comorbidities or other things that you can experience with MS, such as mood changes, feeling of fatigue, and these things can really kind of affect the relationships that you're having outside of your day-to-day life, your day-to- day work environment, how you can perform at work, and we're kind of working together with you to see what we can do to get you back and, working at the best that you can out there in the world. Studies show that a shared decision-making and shared working-around with patients really do improve overall outcomes in patients.

So we want to be there through all the steps, whether it's the medical care, whether managing your symptoms, but also the psychosocial aspects of outside of the hospital.

Host Amber Smith: It sounds like there could be some mental health component to this as well.

Kim Laxton, MD: Exactly.

Host Amber Smith: You've mentioned that this is an autoimmune disease. Do you use the medications that doctors use to treat other autoimmune disorders? Or do you have some that are specifically for MS patients?

Kim Laxton, MD: There are a few that do overlap with other autoimmune conditions, but these were ones that were typically used before we found specific treatments that target the underlying mechanisms for MS a little bit more specifically. Back in the day, things like Rituxan was used, because it had a broader effect, and while it's still used today, we favor more specific treatments when we have more evidence to say that this is multiple sclerosis. So these treatments aim to prevent new central nervous system lesions from forming and help minimize the number of relapses, reducing overall inflammation, and preventing formation of new lesions. So, as I mentioned back earlier with those B cells and T cells, a lot of, these new therapies kind of work on those cell populations to modulate them or reduce their ability to attack ourselves so vehemently.

Host Amber Smith: So the demyelination that has happened, that cannot be reversed?

Kim Laxton, MD: Correct.

Once the myelin has been damaged and leaves that scar, that area is not going to regenerate itself, but our brain finds other pathways at times to get around that area of inflammation. And sometimes that scar is not complete, so there might still be ways for that signal to get through.

But as I mentioned, once you affect that covering of the nerve, or the covering of an electrical wire, that signal might be patchy or doesn't work as well.

Host Amber Smith: How do you deal with patients who have related issues, such as vertigo or bowel or bladder problems or mobility? Do you have referrals?

Kim Laxton, MD: Yes, definitely. Not only are there certain treatments, medications that can help with some of these problems, but we work really closely with other ancillary services, like physical therapy, occupational therapy and vestibular therapies that can work with the individual, notice where they're struggling or what particular concerns they may have, and work with them to strengthen what they have and reinforce any pathways that we can to get them back to as close to baseline as we can.

Host Amber Smith: Do you anticipate that patients may have the opportunity to participate in clinical trials as new experimental treatments are developed?

Kim Laxton, MD: Yes, definitely.

We currently have a few clinical trials that we're working with, so we are actively looking to enroll and educate patients when they are available. They're not necessarily for every population of patients with MS, so, please don't get frustrated if you're really interested in looking for a clinical trial. You might not just fit the picture of that trial, but we're always looking to enroll new patients and work with new trials, so keep asking, and we'll keep trying to work with you if it's something that you're looking forward to or interested in.

Host Amber Smith: Does the MS clinic offer any sort of support groups or counseling for groups of people, to bring MS patients together?

Kim Laxton, MD: Yes, we work with the MS Society, and they have local chapters in different areas that work with reaching out to patients and support forming these support groups. So we have resources that we can give to connect patients with local groups or even national groups, depending on what they're looking for, for that support.

Host Amber Smith: Let me ask you, because you shared that your mother has MS, , have you learned anything that could help your patients, being a daughter of someone who has this disease? Does that inform your caregiving with your patients?

Kim Laxton, MD: Yes, definitely. I think an important thing that maybe we don't all recognize is that patients with MS may not look like they're sick, may not look like they're going through anything. A lot of patients we see would look just like you or I. But underneath that, they may have struggles from a day-to-day basis that they not always present or that they're good at covering up, but it's still there.

So, being aware of certain situations or being aware that they may not be able to keep up with everything that you're going through is important, believing when they're saying they're going through something, even though they might not look like what we would say is sick. I think that's a common complaint that a lot of patients experience with family and friends, that they don't understand, or they don't know that they can't go outside when it's really hot, or it's certain things are struggles for them. It's just being open and listening and taking what they're saying as what they're experiencing. Because it can be tricky sometimes to really piece out what's going on.

Host Amber Smith: So there's, it sounds like, some invisibility with this disease.

Kim Laxton, MD: Uh-huh. Exactly.

Host Amber Smith: Are there good days and bad days? In other words, if someone is feeling good one day and then they're not the next, that's normal, right?

Kim Laxton, MD: Exactly. And that's another one of these classic things with MS, is that, the body doesn't like heat a lot of the times with multiple sclerosis.

Again, going back to that electrical analogy that when it's hot outside the electricity and those firings, they're not as efficient; they don't work as well. So not only do we have a broken wire, now we have one that's put into a situation where it's not going to work at its maximum, even then. So a lot of times patients who might normally not have any symptoms, or maybe they had a symptom way back then of some numbness and tingling, as an example, it gets hot out, and they might have that symptom come back. It's not new inflammation or new disease activity necessarily, but it's just that wire really telling them that, "Hey, I'm not liking this right now. It's not working so well." So they can definitely have good days and bad days. And not only heat, but stress, fatigue, having any other sickness going on, like a UTI, a urinary tract infection, having a cold, COVID, all of those things can make the body not work at its prime or its optimum and lead to more symptoms that they might experience.

Host Amber Smith: Well, now that you have the medical knowledge about this disease as well, what's your outlook in terms of, do you think will have a cure for this in your lifetime?

Kim Laxton, MD: It's something where Idefinitely am looking for that to be hopeful, but since we still don't necessarily pinpoint one exact cause, we find a lot of contributing factors to MS. We find that there's lots of things that increase the risk in kind of a chain-of-events list of things that have to happen to get MS. Since we can't really pinpoint one thing, it's hard to Imagine a cure right now for something that has a lot of disparate possible contributing factors to the disease. So while I'm really optimistic, I think that we're going to have to have a lot more study of looking to see where all these disparate things might connect, to work for that cure.

But we're going to keep trying. That's definitely something I can say from the medical point of view, that people will continue to look until we find something.

Host Amber Smith: Well, Dr. Laxton, I really appreciate you making time to tell us about the comprehensive MS clinic.

Kim Laxton, MD: Well, thank you so much for having me.

Host Amber Smith: My guest has been Dr. Kim Laxton. She's an assistant professor of neurology at Upstate, and she cares for people who have multiple sclerosis. "The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe.

Find our archive of previous episodes at upstate.edu/informed. This is your host, Amber Smith, thanking you for listening.