Multiple Sclerosis Education Series. January 11, 2024. The Ohio State University Wexner Medical Center.

Kristi Epstein, APRN-CNP: Tonight's patient education event. I want to go over a few housekeeping slides first just to let you know what's going to be happening during this evening's webinar.

[Text on screen:
General housekeeping
- All mics and videos are muted
- Please use the Q&A feature to submit questions
- The session is being recorded]

Number one, you're going to remain muted and your cameras will be turned off for the duration of the webinar. This session will be closed captioned and recorded for viewing at a later time. Throughout the evening, we would like to invite you to type your questions you have about the presentations into the Q&A box. Just a reminder, please don't disclose any private health details or ask personal questions about your own disease or treatment. All the questions need to be general and related to MS and the presentation content. 

[Text on screen:
Multiple Sclerosis Education Series
January 11, 2024
The Ohio State University Wexner Medical Center]

At the very end of our session, our experts will answer as many questions as possible during the Q&A panel.

So for tonight, I'm Kristi Epstein. I'm a nurse practitioner in the MS clinic. Many of you already know me and I would like to offer a welcome to you tonight for joining us. Many of you are joining us again and have attended many of our series and we welcome you back. If you are here, you're either living with MS yourself or you're caring for a family member or loved one who is dealing with MS. Whatever your reason for being with us tonight, we're so happy to spend the next 90 minutes with you.

So tonight, I'm going to be your host, and I'm going to share this evening with some of our wonderful colleagues at The Ohio State University and Nationwide Children's Hospital MS Care Team. You're going to learn more about them over the next hour and a half as we talk about various aspects of life with MS. Tonight, we're going to have a singular focus on MS relapse, medical management of MS relapse, and some research updates.

Our team is very collaborative and it's made up of physicians, physician-scientists, nurse practitioners, and specialists that are committed to providing you with the very best care and treatment that is unique to you and your needs. Our goal is to offer you comprehensive healthcare and we work together as a team to help you achieve your very best quality of life.

So with that being said, it is going to be my pleasure to introduce our very first speaker. Our first speaker is Dr. Kelsey Poisson. Dr. Poisson is a child neurologist and neuroimmunologist at Nationwide Children's, and is Assistant Professor of Clinical Pediatrics and Neurology at The Ohio State University College of Medicine. She is the co-director of the neuroimmunology program at Nationwide Children's Hospital. 

She completed her child neurology residency at Cincinnati Children's Hospital and her pediatric and adult neuroimmunology fellowship at Children's of Alabama and the University of Alabama at Birmingham. Her clinical and research interests include neuromyelitis optica spectrum disorder, or NMOSD, social determinants of health, and transition of care into adulthood, as well as long-term quality of life in adults with pediatric-onset multiple sclerosis. So please join me in welcoming Dr. Poisson.

[Text on screen:
Relapses in MS
Kelsey Poisson, MD
Co-Director, Neuroimmunology Clinic, Nationwide Children's Hospital
MS Webinar 1/11/2024]

Kelsey Poisson, MD: Great. Please let me know if you can't see my slides, otherwise, I'm going to go ahead and get started. It's wonderful to have you all here with us tonight and tonight I'll be discussing relapses in MS. And of course, ultimately our goal is that we're not having relapses, but we want to be prepared so that if we're concerned we could be having a relapse, we're recognizing the signs and we know what to do next.

[Text on screen:
Disclosures
Dr. Poisson has served as a consultant with Genentech and Horizon. 
Clinical recommendations are evidence based and free of commercial bias.]

My disclosures today are that I've served as a one-time consultant with two pharmaceutical companies. My clinical recommendations are based on evidence and are free of commercial bias.

So first of all, what is an MS relapse? This is something that has been called a lot of things. So it's also known as an MS attack or an MS flare, and this is a new neurologic symptom that's lasting for at least 24 hours and is not caused by an infection or by other environmental or extraneous factors, and we'll talk a little bit more about what that means.

The symptoms could be a myriad of symptoms, but some common ones would include weakness, numbness, tingling, blurry vision, painful eye movements, problems with coordination or walking, and much more.

And so what is the cause of an MS relapse? In MS, our immune system is attacking ourselves instead of attacking things that it's supposed to, like a virus or a bacteria that it's supposed to fight off, and so what the immune system is actually attacking to cause symptoms or a relapse is the covering of our nerves, which is called myelin. When this covering of our nerves, myelin, is damaged, we call it demyelination.

Here's a figure. On the left here, you can see a healthy nerve cell, which is called a neuron, and then on the right, a damaged nerve cell, or neuron. You can see here in red there are sections of the nerve cell that are coated by this red circle, which is the myelin. So it's like a fatty coating of our nerves and it's like the insulation on a wire. So essentially, it's helping our brain conduct signals to our spinal cord and to our body that then can do actions.

Normally, how this would work is this coating, myelin, would transmit the signal more quickly and efficiently to perform an action, such as holding this cup here, but when there's demyelination or damage to the myelin on top of the nerve, you can see here that that signal doesn't transmit like it should. So either it's faulty or slow, and that can result in us trying to do an action that doesn't work, such as dropping a cup.

And so depending on where the myelin is damaged, that is what can cause us symptoms. We do have this myelin behind our eyes in our optic nerves, and so when we can get damaged there, we would call that optic neuritis. That can impact things like blurry vision, we could have pain moving our eye movements around, colors may look washed out, such as red not looking as bright. We can have effects on our brain or our spinal cord as well.

Based on where the symptoms are, we can often figure out if we feel like it's more likely a problem with the brain or a problem with the spinal cord. So either one could cause us weakness or numbness or walking problems, but for example, if both of our legs are affected, we would think it's more likely a spinal cord problem. Whereas if it's half of our face and one side of the body, that would be more likely coming from the brain, for example.

We can also have problems with coordination, with our movements, and especially with spinal cord issues, we can also have problems with our urinary system, which could include urinary accidents, having to rush to the bathroom all day, having trouble going to the bathroom, and especially constipation. We can also have problems with our swallowing and our speech or our face feeling numb or droopy as well. So there are a lot of different symptoms that can happen.

Now, in contrast to a relapse, what is a pseudo-exacerbation? A pseudo-exacerbation also has many names. This could also be called a pseudo-flare or a pseudo-relapse, and what this is, is this is a temporary worsening of old neurologic symptoms without any signs of new inflammation. And so, the key here is that these are old neurologic symptoms. So for example, if when your MS was first diagnosed, say you had weakness and numbness on the right side of your body, that mostly goes away, but at certain times, it may flare up not as severe as the first time you presented with it. That would be a pseudo-exacerbation, assuming that there's no new lesions or no new spots on the MRI showing that there's a new attack.

So really, treatment for a pseudo-exacerbation is addressing whatever the trigger is, and I've listed some of the triggers here that are most typical. I would say that infection is really our primary concern, and especially in MS patients, we're at a higher risk for UTIs. And so we're often asking if there are any urinary symptoms such as painful urination, trouble urinating, frequently urinating, or any foul-smelling urine, but other infections can also cause a pseudo-exacerbation. So if there are any fevers recently or any other sick symptoms recently, that's something we want to know about as well.

Stress can definitely cause pseudo-exacerbations of symptoms. Some women living with MS will note that their symptoms may flare up during their menstrual cycle or just immediately before, and that's something to talk to your doctor about as well.

Heat is something that can be really bothersome to MS patients, and so this could either be being outside in very hot weather in the summer or prolonged, very vigorous exercise may be too much for some people and we have to find alternative exercise options.

And then chronic fatigue can also cause a lot of our symptoms to worsen. You know, when our brain is just not working at its best and we're sleep-deprived, we're fatigued, that can also cause some of our old symptoms to come back and give us trouble.

And last but certainly not least is that we can't just attribute everything that goes on to MS, right? And so we want to think about what other medical problems could be causing any neurologic symptoms to flare up. So for example, diabetes can cause numbness and tingling, and sometimes we have to figure out, is this more from my MS or is this more from diabetes? There are certain medications that could also affect our symptoms, and that's something to talk to your doctor about as well. For example, if our blood pressures are not managed well or our sugars are not managed well, that could also make certain neurologic symptoms worse.

So what do I do if I'm having a relapse? So the first thing to take note of is, like I said, we can't assume that every symptom we have is from multiple sclerosis, so the timing of the symptoms really matters. And I say that because when we're having an MS relapse, that should come on fairly slowly, and so in contrast to something like a stroke that would come on very suddenly. So if, for example, we're having a very sudden new symptom that comes on over seconds to minutes, of inability to speak, speaking garbled words, our face is drooping, we're weak on one side of our body, and that happens very suddenly, that is something that we should go to the ER for immediately to rule out something else like a stroke.

In terms of MS relapses, these are symptoms that often will come on and then evolve over several hours to even a few days, and so that's important when we keep the timing of the symptoms in mind. And like I said, a true relapse, the symptoms should last for more than 24 hours, rather than a pseudo-relapse where we may just have symptoms flare up with the heat, but then will go away again afterwards.

As I mentioned before, thinking about is this an old or a new symptom? And so if it's a completely new symptom, we can't attribute that to a pseudo-relapse. We need to do more investigation. And if this is an old symptom, is it exactly like it was before or is it something that is a little milder, just keeping track of what the symptom is like. And then of course if it is an old symptom, thinking through those triggers we discussed for pseudo-exacerbation. Did you just exercise in the heat for a long time that, doing something that wasn't typical for you? Have you had fevers recently? Any UTI symptoms? Is it near your menstrual cycle, et cetera? And then really, you want to call your doctor to say, "Let's talk about this. What should I do next?" And that can really depend on how severe the symptoms are.

And so based on what's going on, we can help you figure out is this something that we could manage at home? Is this something that I need to go to the ER for or go into the hospital for if it's more severe? Or is it something where the symptoms are mild enough that I can wait to get an MRI scan for a few days, to get it scheduled, and then start steroids afterwards?

Steroids, as will be discussed in the next talk, are a treatment to help your symptoms get better faster, but we're always balancing the fact that, actually, IV steroids can actually make MRI scans a little more difficult to interpret at times. Sometimes if we give IV steroids before we get an MRI that has dye or contrast in it, then that may affect the quality of the scan. So that's something that we're weighing with you to say, "If these symptoms are bad enough, we need to start steroids now," we're not going to wait for the MRI scan. We want to make you feel better, but these are the type of things that we would discuss in terms of the next steps.

And overall, about 70% of patients will recover fully from a relapse. It just takes time. The steroids can make that faster, but also time is your best friend too. And children with MS actually recover even better than that, than adults do, but they can sometimes have more relapses than adults.

Ultimately, this isn't something that needs to be decided in the moment, but our goal is overall to prevent relapses, right? And so this warrants a conversation on if this is a true relapse, do we need to consider switching to a different MS medication? And it's also important to keep in mind, looking back and saying, "Have I missed any of my medication?" Because that could be an explanation for why a relapse has happened and maybe we haven't truly failed that medication.

Okay. Well, I know that was a really quick overview, but feel free to put any questions in the chat and then I'm happy to address them at the end of the presentation. Thank you very much. 

Kristi Epstein, APRN-CNP: Wonderful. Thank you so much, Dr. Poisson. And remember, everyone, to please go ahead and put your questions into the Q&A box. We're going to get to your questions at the end of the evening when we have our Q&A session.

So it's always good to have a great review on relapse, and next it's going to be my pleasure to introduce our wonderful clinical pharmacist, Dr. Margaret Hansen. I know many of you know Dr. Margaret Hansen. We do have other new clinical pharmacists on the team, Dr. Meredith Puckett, and many of you may have the opportunity to meet her. 

Margaret is an amazing clinical pharmacist and I'm not sure how we functioned before she joined our team.

So Dr. Hansen joined our team all the way back in 2019, and she received her PharmD from the University of Kansas. Go Jayhawks. She completed two years postgraduate residency training at the Ambulatory Care Pharmacy, and I believe you were in Denver, so wonderful location. Anyway, Dr. Hansen shares that she especially loves her job because she gets to help people better understand their disease and their medications, which can be very complex.

[Text on screen:
Treatment of MS Relapses
Margaret Hansen, PharmD
January 11, 2024]

So please join me in welcoming Dr. Margaret Hansen.

Margaret Hansen, PharmD: All right, thank you very much, Kristi. I promise when I wrote that bio, I didn't put in all of those amazings, but I appreciate them. All right, I think you should be seeing my slides now.

So I'm going to pick up where Dr. Poisson left off and start talking about treatment of MS relapses. A very quick review. A true MS relapse is a sign of new neurologic disease activity causing symptoms that last and persist for at least 24 hours and not caused by fever infection. 

This is compared to an MS pseudo-relapse, which is somewhat unfortunately named because the symptoms and the way they make you feel are certainly very real, but the pseudo refers to that this is not new MS autoimmune activity causing these symptoms. Instead, common triggers for pseudo-relapses are infections, fever, increased body temperature, and physical and emotional stress can also contribute.

So when we talk about treating an acute MS relapse, we really have three options. Our first option could even be no treatment. No treatment might be indicated if somebody has very minimal or very mild or no symptoms from their relapse. This might be somebody who went in for a routine MRI and we found a new enhancing lesion, but they have no associated symptoms.

However, when a relapse causes symptoms, very often we'll want to treat those symptoms with high-dose steroids. The goal of using steroids when we're treating an MS relapse is to help you recover faster, to help relieve you of some of those symptoms sooner. Data has shown that whether someone receives steroids or not does not impact necessarily the degree to which you recover from the relapse, but can shorten the time that you're having that relapse. Typically, we expect after you've started steroids, within three to four days of that first dose, you should start to see some improvement with those symptoms. If somebody doesn't respond to a course of steroids, we may consider repeating it.

[Text on screen:
Treating MS Relapses
Corticosteroids
- High dose steroids for 3-5 days
- Steroid tapers are not common
- IV Steroids: 
Methylprednisolone 1000mg per day
- Oral Steroids:
Prednison 1250mg per day (25 tablets)
Dexamethasone 160-180mg per day (25-30 tablets)]

So the steroids we use are high-dose steroids, typically for three to five days for an MS relapse. We do not typically taper the steroids, meaning that you decrease the dose slowly over the course of a few weeks, but that may be more common in other neurologic conditions, like NMO, MOG. The steroids we use are IV steroids, methylprednisolone, 1,000 milligrams a day, or the oral steroids, most commonly prednisone, but we can also use dexamethasone in some cases.

It's really sort of up to you if you have a preference for the IV steroids versus the oral steroids. Data shows that the impact to your symptoms are not significantly different whether you get them in IV form or oral pill form. If you go the oral route, you will be taking quite a few tablets, which can be kind of challenging. I recommend to people they get two tall glasses of water, sit down on the couch, watch your favorite television program, and just slowly take those pills over the course of the program. That can keep you distracted from how many pills you're having to take.

[Text on screen:
Side Effects from Steroids
- Short term side effects:
Mood Changes
Difficulty Sleeping
Acne
Heartburn, GI Upset
Increased Appetite
Swelling
- Long term side effects
Psychosis, Paranoia
Cataracts, Glaucoma
Skin Thinning, Hair Loss
Immunosuppression, Infection
High Blood Sugar, Diabetes
Peptic Ulcer Disease, GI Bleed
Adrenal Suppression, Weight gain
Avascular Necrosis
Osteoporosis, Bone Fractures]

There are lots and lots of side effects from steroids. We're not really going to focus on any of the long-term side effects because we're not using these steroids long-term, but there are some common short-term side effects that people receiving these high-dose, short-term steroids for an MS relapse might experience. Most commonly are going to be heartburn, GI upset, maybe some mood changes, and difficulty with sleep.

So what do we do about these side effects? Well, for heartburn and GI upset, taking the pills after you've had a full meal, have some food in your stomach can help. Again, you want to take it with full glasses of water. You really want those pills to get down to the stomach so we're not kind of irritating the esophagus as well. We can give you a short-term prescription for about two to four weeks of an antacid medication, something like Prilosec or omeprazole, Nexium, can be pretty effective and okay to use for a short term. IV steroids do have less GI side effects, so that's something to keep in mind.

Steroids can cause insomnia. This is generally a dose-related side effect, so it can be fairly common with our high doses. If you're taking the oral pills, you can try taking them in the morning so they interfere with sleep a little less. It might not be adequate to make a big impact. You want to have a bedroom that's conducive to sleep. Dark, cool, comfortable pillows, comfortable bed, limited noise, maybe keeping the pets out of the bed so they're not stealing space from you. If you're struggling to sleep and it's been 30 minutes, consider getting up, doing a quiet, kind of calming activity like reading, and then trying to go back to sleep once you're feeling sleepy again.

Steroids can actually decrease your natural melatonin production, and so taking melatonin, three to six milligrams, at bedtime might help with some of the sleep difficulties. Really, time, again, is going to make this better. Once you've stopped the steroids and a few days after, that impact on your quality of sleep should start to decrease.

Another side effect we're going to talk about are mood changes. Again, this can be dose-related. For most people, if there's mood changes, they're mild. So you might notice you're a little short with your spouse or not as much patience as you normally have, or maybe things just affect you and you find them sad a little easier. These are generally pretty mild effects, and again, once you've stopped the medication, expect that to return to normal.

Some people can have some severe mood changes including paranoia, severe depression, so if you're suffering from severe side effects or mood changes from the steroids, seek emergency medical care if you have feelings of hurting yourself or others. If you're a caregiver or a loved one of somebody receiving steroids for their relapse and you notice mood changes, again, seek medical care if it's severe. But overall, things like mindfulness, meditation, breathing exercises can help calm, maybe help with some of that shortness you might feel while you're on steroids.

[Text on screen:
Managing Short Term Side effects from Steroids
- Infections: 
Wash hands frequently
Antibiotics prophylaxis with longer steroid duration
- Weight Gain
Maintain normal diet
Continue physical activity
- High blood sugar
Limit sugar and carbohydrates in food
Talk to your doctor about any diabetes medication changes
- High blood pressure & Swelling
Monitor blood pressure
Take blood pressure medications as directed
Decrease salt in diet]

Other side effects we might notice, infections. It is immunosuppressing, so washing hands frequently limits those exposures. Again, for our patients who might be on tapers for several weeks, sometimes we will start an antibiotic to decrease the risk of a certain type of pneumonia.

Weight gain. With a three to five-day course, this isn't usually something that's very significant, but again, a longer dose can be hard to manage weight. As much as you can, try to maintain a normal diet and physical activity.

Steroids will increase blood sugars. This is probably most applicable to anyone who also has diabetes. Consider reaching out to your primary care doctor or your endocrinologist to see if they have recommendations on how you can adjust your medications if your blood sugars are significantly impacted by the steroids. 

Steroids also temporarily increase your blood pressure and can cause some swelling, especially in the ankles and lower parts of the legs. This is because steroids make you hold on to more sodium and that sodium brings water with it. Decreasing the salt in your foods can help, stopping the medication that should resolve, and if you have very severely high blood pressure, seek medical care.

So our last option for treating an acute MS relapse is something called plasmapheresis or PLEX. Now this is typically reserved for very severe relapses, relapses that are, that someone is in the hospital for and has not previously responded to steroids. Plasmapheresis is a way of filtering the blood, so it takes out some of the inflammatory components from the immune system out of the blood. It's done in the hospital, typically three to seven cycles. And there is a risk for infection because they will start what we call a central line, which could introduce infection and low blood pressure is a possibility from the procedure.

So summary of our MS relapse treatments. No steroids may be needed if side effects are limited. But in many cases if people are having symptoms and they're impacting their quality of life, we will want to use steroids. They are more effective kind of the sooner we can get them started after symptoms come on. And then PLEX, we reserve only for severe cases that haven't responded to steroids.

[Text on screen:
Treating MS Pseudo-relapses
- Treat the underlying conditions:
Infections
Fever
Recent Vaccination
Overheating
Physical or emotional stress
- Fever: Acetaminophen 1000mg every 4-6 hours
- UTI: May be prescribed antibiotics
- Muscle Aches/Headaches: Ibuprofen (Advil) 400mg every 8 hours
Naproxen (Aleve) 200mg every 8-12 hours]

So how do we treat an MS pseudo-relapse? So the biggest thing to do is remove or treat that underlying trigger. Things like infection, Dr. Poisson mentioned, we have to rule out things like urinary tract infections, other infections, fevers, anything that can increase the core body temperature even by a half degree could be enough to really trigger some MS symptoms. 

So seeing your doctor if needed for an infection, antibiotics for a UTI, treating fevers after a vaccination or part of your illness with Tylenol can be very effective and help your MS symptoms. In general with a pseudo-relapse, once we've kind of removed or treated that trigger, those symptoms should start to recover and kind of come back to baseline.

[Text on screen:
Treating MS Pseudo-relapses
Staying cool
- msaa Improvng Lives Today!
Multiple Sclerosis Association of America
- Cooling Distribution Program:
Online application
Assistance every 5 years
https://mymsaa.org/msaa-help-cooling-products/
- MS National Multiple Sclerosis Society
- Cooling Product list and discounts
- MS Navigators:
PH: 1-800-344-4867
Online Chat Mon-Fri
https://www.nationalmssociety.org/Resources-Support/Find-Support/Ask-an-MS-Navigator]

Staying cool can be very important for people with MS. So there are lots and lots of products out there to help you stay cool. There's vests that can be worn over the clothes, vests that can be worn under the clothes, cloths for the neck, and even hats that have evaporative cooling. Some of these products can be pretty pricey. So the Multiple Sclerosis Association of America has a cooling distribution program with an online application. You may qualify for financial assistance through them. Or the National MS Society has a very nice handout or document on the different cooling products available, even has some discount codes. And again, they have MS Navigators who might be able to help with some financial assistance if needed.

[Text on screen:
MS Symptom Treatment
Nerve Pain
- Gabapentin & Pregabalin (Lyrica)
Wide dosing window
Works better when taken regularly, not as needed
Side Effects: Dizziness, fatigue, brain fog, leg swelling
Increase dose over time to improve side effects
- Duloxetine (Cymbalta) & Venlafaxine (Effexor)
Antidepressants
Side Effects: GI upset, insomnia, worsened anxiety, sexual side effects, withdrawal symptoms
- Carbamazepine (Tegretol) & Oxcarbazepine (Trileptal)
Antiseizure medications
Helpful for muscle spasms
Side Effects: dizziness, brain fog, fatigue, low sodium, liver dysfunction
Requires lab monitoring
Many drug interactions. Decreases effectiveness of hormonal birth control.]

We're going to quickly go over just a sampling of some of the medications we might use for MS symptom management. This could be a whole hour in and of itself. But nerve pain tends to be something that an MS relapse can worsen or after the relapse people have new or maybe worsened nerve pain. We can also use most of these medications for chronic symptoms. So if you have nerve pain ongoing and it flares with a pseudo-relapse, we might consider trying to treat some of that pain with these medications. 

We most commonly start with gabapentin or pregabalin. This has a very wide dosing window, meaning some people are on 300 milligrams a day and some people are on over 1,000 milligrams a day. So we usually start with a low dose and we'll increase it slowly over time to find what dose works best for you.

I've come across lots of people who have taken only a couple of days of their gabapentin and stopped it because they didn't like how it made them feel and they had to take it three times a day. We can start slower than that and that can really help with some of the side effects, especially things like making you drowsy, feeling dizzy. Even some brain fog can get better in those first few weeks that you're on it. So we can kind of go slow and if you feel like maybe the gabapentin could help but you didn't tolerate the first dose, talk to your doctor and we can consider going down. 

Other medications that might have some benefit in nerve pain are antidepressants, duloxetine or venlafaxine. And we also use some anti-epilepsy or anti-seizure medications called carbamazepine or oxcarbazepine.

The carbamazepine and oxcarbazepine can be especially helpful if people suffer from muscle cramps or spasms. Especially at night, if you lay down and you get a lot of spasms in your leg, kind of like an attack almost, these can be particularly good medications for those types of symptoms. They can have several drug interactions. So just always important to make sure you're not taking something that interacts. And for women who are on hormonal birth control, both of these medications can decrease the effectiveness, so you'd need to use a backup method.

[Text on screen:
MS Symptom Treatment
Muscle Fatigue
- Dalfampridine (Ampyra)
"Walking Pill"
Improves never cell firing speeds
Dose: 10mg every 12 hours
Side Effects: dizziness, imbalance, seizures
Labs: Kidney function
Approximately 30% of patients respond
May be costly

Last medication I just want to briefly talk about that sometimes we use for symptoms that might be changed after an MS relapse. This is Dalfampridine or Ampyra. Sometimes this is called the walking pill. So in the clinical trials, they mainly judged its efficacy on if it improved people's time that it took to walk 25 feet. However, it's not just beneficial for the muscles in the legs. So it can help with the transmission of the kind of messages or the signals from the nerve cells to the muscles. And so it can help preserve your muscle function so that you don't get tired out as quickly. That can be in the arms, that can be in the legs. It is important that you take it twice a day and that your doses are close to 12 hours apart. And that's because Ampyra can decrease what we call your seizure threshold. So it can make it easier for someone who's susceptible to have a seizure.

Taking it 12 hours apart limits that risk because you're not getting too much medication in the system. We also have to make sure that you have good kidney function because the kidneys are needed to clear the medication out of the body. So some people with poor kidney function wouldn't be able to take AMPYRA. Not everyone responds to Ampyra. If you try it for about two weeks, you should know if it's going to have benefit for you or not. If it's not, it's okay to stop. 

Ampyra sometimes is costly or not covered by insurance, so reach out to us if you're having trouble affording it. For the most part, we can get it for about $30 a month. So if you're paying significantly more than that, let us know and we can help out.

All right. My last slide is just a couple of tips on preventing MS relapses. Of course, we're not going to be able to prevent all MS relapses. But the things you can do to decrease that risk are being on a disease modifying therapy if that's what your neurologist recommends. All of the MS disease modifying therapies decrease the rates of relapse. 

Also important to be seen regularly by your neurologist and get recommended routine monitoring MRI scans. The other thing you can do is be as healthy as possible. If a relapse happens that helps your body weather the stress that a relapse puts it under. Eating a healthy diet and exercising, controlling other disease states, things like diabetes, blood cholesterol, and hypertension. 

Low levels of vitamin D are associated with more lesions on an MRI. So that's why I'm always asking you if you're taking your vitamin D, and if you're smoke, quit smoking. Smoking is associated with more MRI activity and a shorter time to progression in MS. So quitting smoking is one of the best things you can do. I'm happy to take any questions at the end of the session. Thanks.

Kristi Epstein, APRN-CNP: Thank you so much, Dr. Hansen. Wonderful presentation as usual. So I'm going to go ahead and encourage everyone to put those questions that you might have in the Q&A box. So at the bottom of your screen you will see Q&A, put your questions in there and we're going to get to all the questions at the end of our presentation. So I'm very excited about our next presenter. I'm going to be introducing Dr. Brooke Gaul, who is one of our lead MS physical therapists and she's going to be talking about adaptive technology. We have so many amazing resources here at The Ohio State University and there's a lot of information, so I'm actually excited to hear about some of the details myself.

Dr. Brooke Gaul graduated from Cleveland State University, and I'm sorry I don't know your mascot. But she achieved her doctoral degree in physical therapy in 2018. She is the outpatient rehab multiple sclerosis program coordinator. So she's one of our very best experts when it comes to treating our MS patients. Many of you know her already and if you don't, you're going to want to know her. She serves several neurological patient populations, but primarily MS, traumatic brain injury, and concussion. She does love working on research projects and is currently working on a study with post-concussive disorders. So with that, it is my pleasure to introduce Dr. Brooke Gaul.

Brooke Gaul, PT, DPT: Hello. Going to share my presentation.

[Text on screen:
Adaptive Equipment for People with MS
Brooke Gaul, PT, DPT
MS Program Coordinator
1-11-24]

Okay, like Kristi mentioned, I'm going to talk about adaptive equipment specific for people with MS. There's a lot to cover, so I will do my best to touch everything, but I probably won't go into detail about every item mentioned or the pictures that you see.

[Text on screen:
Disclosure of Interest:
I do not endorse a specific brand of equipment, receive no financial benefit, and have no disclosures of interest regarding the products described or seen in this presentation. The equipment discussed in this presentation is based on familiarity of the therapist and not inclusive of all available options for adaptive equipment. This presentation is not prescriptive in nature - please speak with a medical provider before deciding to obtain equipment.
The Ohio State University Wexner Medical Center]

Brooke Gaul:
In my disclosure, I just want to mention that I don't endorse a specific brand of equipment and I'm not receiving any payment for talking about any of the things that I mentioned today.

So what exactly is adaptive equipment? Anything that is a tool that helps you hold objects, open and close doors, transfer weight or shift positions or move around your environment, essentially anything that helps you complete an otherwise difficult activity. So it's a wide umbrella. 

It can be a simple tool like the picture on the bottom left, which is a built-up fork. Or it can be more elaborate like the picture on the right, which is a sip and puff. It's hard to see the white straw there, but a sip and puff head array for a power wheelchair. 

The intent with using adaptive equipment is to help you with safety, independence or ease of the activities that you're doing. Examples of what adaptive equipment would include are adaptive tools, assistive devices for walking, wheeled mobility, wearable electrical stimulation devices, braces, splints, and orthotics.

So when you're considering using adaptive equipment, you want to think about some things before jumping in and buying something. So think about when you would use the equipment. What you need in the home versus what you might need out in the community, during special circumstances such as in busy environments or when you're traveling. Think about what you might need during a relapse or while recovering from a relapse. And then when you're getting progression of your symptoms due to disease progression or aging with MS. 

So when you're considering what you need, you should think about what you need right now as well as what you need in the future, especially if you're going through your insurance for coverage for the items that you're purchasing.

Think about if you need assistance from others to use the equipment and how reliable you'll be able to rely on assistance in use of the equipment. And then you want to think about how the adaptive equipment impacts your MS symptoms like fatigue with heavy equipment, heat intolerance with something that's all encompassing of your skin or any cognitive impairments that might compromise your safety with using equipment. 

The research shows that people with MS in mild to moderate symptoms can significantly reduce the impact of fatigue through energy conservation strategies. And one strategy is using adaptive equipment to compensate for what you have difficulty doing.

So when you're thinking about getting adaptive equipment, as a physical therapist, I would recommend seeking out an occupational or physical therapist to give you a recommendation on what would work best for you. We're trained to help you learn what assistive devices can help you, which one is the best option for you right now, where to get them. And then train you on how to use them in different settings. 

So if you're getting something considered off the shelf, kind of like over-the-counter, you can get those items from stores and pharmacies. Special medical supply stores like Dasco or Crosby's here in Columbus. You can purchase things online like Amazon and from home improvement stores. 

Now, if you're getting prescription equipment, you'll have to go to either a pharmacy or a drug store, a medical supply store, an orthotic clinic such as Hanger or Capital Orthotics here in Columbus, or even a rehab clinic if you're getting something custom-made that we can offer in outpatient rehab.

Okay, we're going to start talking about equipment that you can use for daily activities. The first activity we're going to talk about is dressing and grooming. So the picture on the bottom left is a dressing stick that helps you via the hook that you see on the end there. The second picture is called a sock aid and you use that to help put socks on. The third is a reacher, which is pretty self-explanatory. It's the one people are most familiar with. 

The fourth picture along the bottom is called a button hook. That's helpful if you have problems with using your hands or your dexterity. And then the bottom right picture is a long handled shoehorn. The picture on the top right is a really cool device for if you have decent use of one hand but not both hands. And this is a one up hair tie where you can use your hands or your feet to put your hair up in a bun or a ponytail.

The next activity we're talking about is eating and drinking. So the orange rubber aspect of the spoon on the bottom left is called an EazyHold grip. And this doesn't have to be used for only eating utensils, you can use it for lots of things that you need to grip but have a tough time gripping like a hammer. The second picture is called a universal cuff, also known as U-cuff. And here they slid a spoon into it to help with eating. The middle picture on the top is called a scoop plate. And that helps you get items onto your eating utensil by scooping it up through the side of the plate.

The bottom middle picture is another example of built up utensils. From the first slide you saw, that built up fork, that comes that way with that plastic part built around it. The picture on this slide, these items are soft foam tubes that you can purchase on Amazon and slide over tools that you already have so you don't have to purchase new utensils. 

The fourth picture is called a rocker knife. And this is used when you have a hard time performing the sawing motion, needed for using a traditional knife or if you have a hard time gripping a traditional knife. And this can help with safety with using that as well. There's different handles for those if gripping this type of handle is something that you would be concerned with. 

The last picture is called a nosey cup. And you can get these without the handles that you're seeing here. And then if you look at the front of the cup, the side facing us, that allows you to see the liquid approaching your face as you're drinking it, which is pretty cool.

The daily activities of bathing and toileting are pretty important. A common item people get is a non-slip bath mat, if you would like to remain standing in the shower, but you're concerned because of a balance problem with slipping. The bottom left picture is a long-handled sponge you can use for bathing. The second picture is a shower chair, which is similar but different to the third picture, which is a tub bench. So the left picture, the white chair, remains in your shower, you step over into your tub and then you can sit on the shower chair. Some have backrests and some don't. That's something that you would want to consider. The blue chair in the middle, the tub bench, helps you with the transfer into the tub so you don't have to step over. And then also functions as a shower chair once you're in the shower.

The one pictured here is a sliding tub bench, but they also have something similar to the plastic chair in the second picture, where you would scoot along the tub bench to get into the tub. So that's one of those things you have to consider. What are you able to do and what can we do to keep you moving as much through the day as possible in any way? 

The fourth picture is an elevated toilet seat. This one happens to have armrests, but you don't have to purchase one with armrests. And then the last picture on this page is a bedside commode. This tends to be helpful when it takes you a while to get to the bathroom or you're rushing to get to the bathroom because your urge comes on quickly. And if you have falls, it might make more sense to put one of these in your bedrooms that way in the middle of the night you can use the restroom quickly and safely.

If you have vision problems, something as simple as a magnifying glass could be helpful for seeing, especially when reading. They have magnifying glasses that also have a light to them and you can use different colors to suit your needs. The pictures of the eyeglasses here, if you look closely at our left, his left eyeglass here, you'll see there's a clear plastic over that eye with up and down lines, and that's called a prism. And that can be helpful for double vision.

Now, if you don't want to wear glasses or don't already wear glasses, you can also patch one eye to help with double vision, especially if it's something that doesn't happen often. It'll allow you to use your stronger eye to see clearly. And then lastly, you can use colored lenses. Research shows that reading speed and visual search may improve with the use of colored lenses. And it also helps if you have sensitivity to light. So in general, blue light blocker lenses are great for screen use. Lighter yellow tinted lenses are good for inside or low lit environments. And then a hazelnut/amber tinted lens is good for brighter or outside environments.

[Text on screen:
Equipment for Daily Activities
Vision Problems
- Tips for Buying Reading Glasses
Schedule an eye exam
Consider your occupation
Consider OTC reading glasses
Consider hobbies you enjoy
Consider prescription reading glasses
Know OTC readers do not correct astigmatism
Understand OTC readers do not work for near-sighted people]

And then here's some general tips for buying over-the-counter reading glasses. I just want to mention that over-the-counter readers do not correct an astigmatism and they don't work for near-sighted people. 

Okay. So considering the daily activities that you complete in your home, it may be helpful to modify certain aspects of your home. For example, the chair on the bottom left is an electronically functioning chair where it helps you via the remote that you see to perform a part of your transfer. So you're standing, you're rising to stand from an almost already standing position. 

The second picture here is a mobile armrest, which you can put in almost any piece of furniture that you have in your home. And it's also mobile, so you can take it to a family gathering if you need to. That way you can use your hands to help push yourself up, especially out of squishy chairs and couches.

The third picture is called a trapeze. And this goes under your bed, as you can see on the bottom left of that middle picture. So this is good if you need help with moving or shifting weight while you're in bed. You can grab it and use it to pull yourself to sit up. You can also use it to roll onto your side and provide yourself pressure relief. 

The fourth picture is a temporary bed rail. This is pretty popular with people that I share this with because it helps them not only with rolling and sitting up in bed, but also rising or standing from a sitting position after sitting in bed. 

The last picture there is a electronic stair lift, which helps you go up the stairs and still access a whole other part of your home.

OSU has a smart clinic where they can evaluate your function and determine what type of smart equipment would be great for you. So these are some of the items that they typically recommend, such as a switch control for phone use. If you have a hard time using a touchscreen, especially on a smaller phone. 

The middle two pictures are awesome versions of adapted remotes for gaming. In the smart clinic, they made that large white and black adapted gaming remote on the right, and then on the left is something that they purchased and helped jerry rig for a patient. But depending on your use, they can adapt a video gaming remote in a lot of different ways. 

And then as far as smart equipment, don't forget home automation. Pictured here is a lock that you can use with your cell phone, but you can also use Amazon tools and things like that for changing lights in your home and turning on music and TVs and things like that.

Okay, so now we're going to talk about equipment for mobility. For standing and transfers, the items here are what I typically recommend for people with MS. So we'll start with the bottom left. This is called a standing frame. The one pictured here has a seat that you transfer into and then you pump the tall handle that you see on the right side of it to raise yourself up to stand. There's also sling seats so that we don't have to transfer into it, but if you're doing this on your own, it can be unsafe if you don't have good placement of the sling. So that's something that you would try in rehab. 

The second picture is called a Hoyer lift, and this is something that you can use if you are relatively dependent for moving from surface to surface. The harness goes underneath you and then someone presses the remote and moves you up out of your chair and then into another surface, whether that be your bed or a car. You can use it in a lot of different settings.

The third picture is a transfer board. A lot of people still call it a slide board, but we're actually trying to move away from that because we don't want you to slide along it. We want you to lift your bottom if possible, that way you can protect your skin. It is pretty low tech and it's a very cost-efficient option to help you with transfers if you have a hard time moving in one fell swoop. 

The very bottom right picture is three different versions of a Beasy board. This is a rotating foot platform to prevent you from rolling your ankles as you're transferring from one surface to another. So you put your feet on it and as you move the rest of your body, the board also rotates with you. 

And then the very cool item on the top right here is called a Rifton Pacer. There's different versions of this depending on your needs, but you can do a lot with this tool. The only drawback is that it's very large. It's larger than the standing frame that you see on the bottom left there. So this has a rising and lowering function with a sling underneath it that doesn't provide body weight support, but it will catch you if you start to sit into it for a break or if you fall, if your knees buckle. It has armrests for you to stay upright with and it also has wheels. So you could use this to transfer, to sit, to stand or to work on standing activities or exercise.

Okay, further into equipment with mobility is walking. These are all single hand support devices. So from left to right is most stable to least stable. So the first one on the left is a Hemi-walker. The second picture is called a quad cane. The one here has a narrow base, but you can also get a larger base than this. 

The third picture is your classic single-point cane. That one comes in a variety of handles. So if you are having trouble using the specific cane that you own, there might be ways that you can adapt it, whether it be the tip or the handle to make it more feasible for you to use. 

The fourth picture is another version of a single-point cane. You might've heard the term hurry cane before. A lot of people like them because it has that four post suction cup at the bottom so that way you don't have to find somewhere to lean your cane when you're out and about. It will stand up when it's not in use and it also collapses, so it's very handy for taking out and about.

And then the last picture of the gentleman there is holding a trekking pole. A trekking pole is exactly what it sounds like. It's something that people typically use in hiking, but it's a nice lightweight, also collapsible item that keeps you nice and tall. You hold it right at a 90-degree elbow bend versus the cane, which is much lower, but it doesn't provide any weight-bearing support. It's just another point of contact to use to help steady yourself. 

Walking with two-handed support, you could use the classic two-wheeled walker that you see on the bottom left.

The second picture is called a rollator. Now those wheels are much larger. Those come in four and six inch diameter, which is great for using outside, but that also means it goes faster. The wheels also swivel, whereas the wheels on a walker do not. So that's something to consider with the level of imbalance and instability you may or may not have. The best features of a rollator are that it has handbrakes that you can squeeze to slow the device or lock by pushing all the way down. And then the number one reason I recommend rollators to people is because of the seat. Due to fatigue in people with MS, if you want to walk long distances, you can take a rollator and have a seat to rest and regain your energy in order to keep walking.

The third item is a walker, but it has a platform on the right side of the picture. So if you have a poor grip on one of your hands, but the other hand works fairly well, you can use just one-sided platform to rest your forearm in while gripping with the other hand. You can have a walker with a platform on either side too. So that's something that we always explore in therapy is which route is the best to go for you to conserve energy and make sure you're safe. 

The last picture on this slide is called an upwalker. We have these in our clinics. Over the past year or two, we've been using them and they've been working very well. What's different about this is it's much taller, hence the upwalker. It's kind of a combination of the rollator because it has brakes, locks and the seat, but it also has platforms on both sides to give yourself some off-weighting from your legs, which is also helpful if you don't have great grip. Again, notice how large these wheels are. That's something to consider when you're deciding what's the safest option for you.

When you're considering getting an assistive device, you should think about the reasons why people might abandon them. So according to the research, people abandon them due to a change in physical condition, not accepting of the device that was recommended or obtained, failure of the device to meet your current needs or a lack of training in using the device. 

And then a special consideration for ataxia, which is incoordination, is using a heavier or weighted device if it does not come at the cost of increasing fatigue.

Okay, there's a lot to talk about. Wheeled mobility could have its own presentation because there's so many different adaptations you can have to these when you're deciding which type of wheel mobility would be best for you. Some safety considerations would be what is your level of cognition as far as memory and reminding use and brakes, etc. Vision and your ability to steer the device. And then manual dexterity. 

So the top left picture seen here is a manual wheelchair and you have to have good dexterity in order to grip the push rims. It also requires good strength, endurance and coordination of your arms. And again, you need good vision in order to negotiate environment.

The power scooter on the top right is commonly seen. Sometimes people will get these as a transition type of device before deciding to go with a power wheelchair. Some drawbacks to a power scooter is that it doesn't have custom seating. So if you're sitting in it for a long time, it can put you at risk for some pain or skin-related problems. It doesn't have great postural alignment because it's not custom seating. I have people report faults commonly when they're transferring in and out of this type of device and it has poor maneuverability in your home because of where the wheels are placed on the device, it has a wide turning radius. And because it offers minimal support for your trunk, you have to have pretty good trunk stability and arm function to operate a power scooter.

The bottom left is a power wheelchair, and this is something that can look much different for everyone because of all the customizations you can get to it, but you see the wheel is in the middle there, so it has an excellent turning radius. The drawbacks to a power wheelchair can be transportation issues because it's so bulky and heavy, you have to have a special van or use transportation services to get this in and out of your home and out into the community. They're also expensive, so you have to consider the qualification criteria when getting that and I will defer any information about the qualification criteria to our assistive technology center specialists, but I'd be happy to direct you to them.

And then the bottom right is a picture of a transport wheelchair. So you'll notice it has very small wheels and that the user does not push, but rather someone is behind them pushing them for you. They're nice and light. So this can be good for caregivers to transport a loved one who is relatively dependent for their mobility. But the drawbacks to using this is that it does decrease the user's independence and some of them do not fold down, which can lead to transportation issues. 

I get the question, "I have MS. Will I have to use a wheelchair?" And the honest answer is that if your MS attacks the nerves that control your muscles, you may have to use a wheelchair. Maybe just during a relapse, maybe some of the time or maybe all of the time. More advanced symptoms can make walking difficult and unsafe. So that's something that you really have to consider what's best for you and then you can talk to your providers about this to make an informed decision.

Okay, so as far as wearable devices for the hands, there are off the shelf options. As you see on the bottom left, that is called an active hand to help grip. So it helps you wrap your hand around anything. Here he's holding a fishing pole. I will use these for somebody to hold a dumbbell or hold onto the treadmill bar in physical therapy. 

The second item is a progressive stretch hand splint from the company Dynasplint. The third is a resting hand orthosis to help you get a prolonged stretch. And the fourth one along the bottom is called our wrist extension split. And that is something that you can get from Amazon or local drugstore. 

The top two pictures of the hands are called a thumb spica and it helps you keep your hand out of being curled into, or keeps your thumb out of being curled into your hand.

Custom and off-the-shelf ankle devices include bottom left. That's a Dictus band. It helps you with lifting up your toes and it connects to any lace-up shoe. The second picture is called a lace-up ankle brace. I normally recommend people get these from Amazon because they're less than $20. It ties up so you can make it pretty tight and it gives you a little bit of lift up, but I recommend them more because of the figure eight aspect of the straps that help prevent the rolling of the ankle. 

The third picture is an off-the-shelf AFO, good for in the short term, but the problem is that it only goes halfway up your calf for most people. So I don't love them personally because it's not a great leverage for getting the best foot lift.

[Text on screen:
Wearable Devices: Custom & Off-The-Shelf Ankle Devices
- Lace up ankle brace
- Dictus band
- Progressive stretch splint (Dynasplint)
- Ankle Foot Orthosis (AFO) - Off-The-Shelf
- Custom AFOs:
Posterior leaf spring
Ground reaction force
Hinged braces
Solid plastic]

And then of the next picture is another version of a Dynasplint that provides a progressive stretch and that's something that you get from Dynasplint themselves. And then an orthotic clinic would provide you with one of those AFOs on the right for a custom fit. 

[Text on screen:
Wearable Devices: Things to Consider with AFOs
- Best potential for successful use & acceptance of an AFO occurs when:
- AFO is as light as possible
- AFO does not block any major movement you still have
Excessive control of motion may cause early weakness of still functioning muscle groups
- Amount of AFO material in contact with the body is minimized for heat dissipation
- AFO fits into a light and low-profile shoe]

You want your AFO to be light and you want it to have minimal contact with your body, so that way it's dissipating heat. And you don't want it to block any major movement you still have because that could contribute to weakness.

[Text on screen:
Wearable Devices: Knee and Hip
- Swedish knee cage
- Allard brace for knee buckling
- Hip Flexion Assist Device (Becker)
- TripleFlex Device (AxioBionics)]

The devices on the bottom left here help with knee hyperextension or knee buckling. And then on the right, those are devices that help you with lifting up your foot. The left one is called a hip flexion assist device by Becker, and the right is called a tripleflex device by AxioBionics. 

[Text on screen:
Wearable Devices: Bioness Forearm, Ankle, and Thigh cuffs
- Cionic Neural Sleeve
- Walkaide
- Bioness (forearm, ankle, thigh)]

There's also electrical simulation devices and those you would have to visit a rehab clinic to trial before obtaining. Not all insurances cover them, so that's an important caveat, but it does stimulate your muscles so that way you are using as much activity of your muscles as possible when you're moving. 

The left pictures is a leg peddler and an arm peddler for some cardio at home. And then the right ones are expensive pieces of equipment that provide you with electrical stimulation to make your muscles contract while cycling. 

And then lastly, I would not recommend these devices. The HKAFO and the KAFO are very big and bulky, it would make you fatigued. And a standard walker where you're picking it up and putting it down constantly would give you too much fatigue. And that is it.

Kristi Epstein, APRN-CNP: Thank you so much, Dr. Gaul, what a wonderful presentation. Lots of information as usual. So always remember, if you're a patient or a family member and you need a referral to any of these clinics, the adaptive device clinic or physical therapy, go ahead and ask your provider and remember to quickly put your questions into the Q&A. I see lots of questions, so that's great. So we are going to move on to our next speaker and we're going to cover research that's currently happening here at The Ohio State University.

We are going to be joined by Dr. Kaitlin Cartwright. Dr. Cartwright previously completed her medical education at the University of Kentucky and her child neurology residency at the University of Michigan. We will not give any negative energy for that because now she's here in the Buckeye state. She is currently completing her fellowship in multiple sclerosis and neuroimmunology at The Ohio State University and Nationwide Children's Hospital, and she plans to specialize in taking care of pediatric patients with multiple sclerosis and other neuroimmunologic conditions. So please join me in welcoming Dr. Katie Cartwright to talk to you about research.

Kaitlyn Cartwright, MD: Hello, good evening everyone. So give me just one second. I'll share my slides. 

Just a little bit of a lag there, but there you go. So we'll be talking, like Kristi said, I'll be talking about research updates here at OSU. So first I'll just briefly review what clinical research is, talk a little bit about what it means for the patient to participate in research and what's involved for that, and then talk about some of the current research trials going on here that are enrolling for patients or will be enrolling for patients soon. 

So just to briefly review, when we're talking about clinical research, we're talking about research that's allowing researchers to gather information about a disease by looking at people who actually have that disease. This is opposed to bench research or basic science research where we're looking more at cells or animal models for a disease.

There are different types of clinical research, just a couple of examples include observational studies. These studies don't involve necessarily giving a treatment or an intervention, but looking at people with some disease or disease process and following them over time to look at how that disease evolves over time, but also to look for possible patterns, whether there is a pattern of one exposure being associated with the disease or another. 

There are also clinical trials, and these involve dividing people into groups. And then letting us compare those groups to say, if we give one treatment to one group versus another treatment to another group, how do people do? And that lets us figure out what treatments are effective, what treatments work, as well as letting us monitor for safety on those treatments.

So what does participating in research look like? First, I just want to let everyone know that participation in research is completely voluntary and declining research will in no way impact your ability or the quality of the care that you receive. But if you are interested in research, every trial has different criteria that we use to determine who is eligible to be enrolled in that trial, and that includes inclusion and exclusion criteria. 

So for example, to be enrolled in a trial looking at MS, you'd have to have a diagnosis of MS, and that would be an inclusion criteria. An example of an exclusion criteria might be, for example, in some studies we exclude women who are pregnant. We may exclude people who have other diseases on top of MS because that may confuse the picture a little bit. So every trial's a little bit different.

If you do meet criteria and you're interested in participating in research, the next step is informed consent. And what that means is you would sit down with someone involved in the trial and you would get a bunch of information about that trial. This would include what is involved, what we're looking for, what are the risks associated with it, what are some potential benefits, and what would be expected of you. 

This is also an opportunity for you to ask a lot of questions. If at the end of this talk you decide that this trial is not for you and you do not want to participate, it's perfectly okay to say at that time, this isn't for me. And then the process would end there. If we go through the informed consent information and you do want to participate in that trial, then the next steps would depend a little bit on the specific study and what is involved in that protocol.

Some studies do require specific research visits, and so that would be a time where we schedule you to come in and it may involve being evaluated by multiple providers, including clinical assessments or physical exams. It may include blood work to look for safety monitoring, like checking your liver function or your kidney function on a medication, as well as getting some information from you on how you're doing or if you're experiencing any side effects. Other studies, you may be able to just come for your regular follow-up visits and we can incorporate it into that visit.

[Text on screen:
Current Studies Enrolling at OSU:
- A Phase-2b, Double-Blind, Randomized Controlled Trial to Evaluate the Activity and Safety of Inebilizumab in Anti-NMDAS Receptor Encephalitis and Assess Biomarkers of Disease (Extinguish)
- Markers of Biological Aging in Multiple Sclerosis
- Neuroscience Research Institute Brain Bank and Biorepository (NRI-BBB)
- North American Registry for Care and Research in Multiple Sclerosis (NARCRMS)
- EFC16035: A Phase 3, randomized, double-blind, efficacy and safety study comparing SAR442168 to placebo in participants with primary progressive multiple sclerosis (PERSEUS) (ECG16035)
Additional studies are likely coming soon!]

So here's just a list of some of the examples of current studies enrolling here at OSU with the note that we will likely have additional studies coming soon. The first study listed here is for NMDA receptor encephalitis. The rest of them are studies looking at specifically multiple sclerosis, and so we'll talk a little bit about each one of those. 

The first study that we'll talk about is the Markers of Biological Aging in Multiple Sclerosis study, and this is looking at what we call biological aging, which is different from our chronological age and that we can look at markers in our blood of how our body is aging over time. And the goal is to see if those markers of aging impact the disease course in MS when compared to those who do not have MS. 

This study is open for patients age 18 and older with a diagnosis of MS. Because of the testing that's involved, you must be fluent in English.

If you decided to participate in this study, it would involve first informed consent. You would also undergo blood draw for markers of biological aging. You would have a clinical assessment, which is just the physical exam that you have done in clinic, an MRI and a cognitive assessment. Then at six months, we would repeat the clinical assessment, which again would just be the physical exam that you have done in clinic, and that could be done at your regular follow-up visit. And then at 12 months you would have, again, a physical assessment as well as a repeat MRI and that repeat cognitive testing. Again, with the goal being that most of this can be done at your regular follow-up visits, with the exception of the MRI, though could be coordinated for the same day.

Another study that we'll be enrolling soon is the North American Registry for Care and Research in Multiple Sclerosis. This is a multiple site study which is basically designed to create a database to gather information about patients with MS, both relapsing and progressive forms. And to follow them throughout their disease course to just gather more information about how patients are progressing with time and to try to look for patterns. So this is one of those observational studies. 

This study is open to patients age 18 to 65 with a diagnosis of MS, so you have to have had onset of symptoms within the last 15 years. The goal is for this to be incorporated into regular visits with the initial visit being just document baseline information, including your history with MS, as well as any potential related factors or things that may have influenced your disease course with time. And then you would have yearly follow-up visits, as well as extra visits in case you were to have a relapse or to change your disease modifying therapy. 

Another research opportunity we have here is the Neuroscience Research Institute, Brain Bank and Biorepository. So, this is a collaboration here at OSU where we're gathering information. And so, this includes information from people's blood and spinal fluid, as well as other samples from patients with neurological conditions. And then we're saving those samples so that they can be used for research and data gathering for patients with MS or other neurological conditions. So, this is open to anyone with an underlying neurologic condition.

Basically what we're doing is when patients are coming in and having blood drawn already for safety monitoring on their medications, or if a patient is undergoing a spinal tap to assist with their diagnosis, we would talk about this study and collect extra fluid. So, it's not an extra blood draw or an extra spinal tap, it's just collecting extra fluid at the time of your procedure, with the goal being that we can use that for research and to gather more information about these diseases as time goes on.

We also have the MS disease intervention program. This is enrolling patients with MS to look at the impact of lifestyle interventions on symptoms and quality of life. So, participating in this study involves a survey in which you would answer questions about current symptoms and your quality of life. You would then receive an instructional booklet and a calendar with the goal being that you would implement lifestyle interventions, including maintaining a healthy diet, participating in mindfulness, regular exercise and good quality sleep. And then at the end of those 12 weeks, you would do a post-survey to reassess your symptoms and quality of life, and to look for impacts that lifestyle may have on those things.

The last study that I'll talk about is a medication trial. So, this is a study looking at a BTK inhibitor, which is a Bruton Tyrosine Kinase inhibitor, in the case of primary progressive multiple sclerosis. So, BTK impacts your immune function, and so BTK specifically plays a role in the function of B cells. And as you may already know, if you're on Ocrevus or Kesimpta, B cells are often a target for medications in MS. This has been shown to be effective in mouse models of MS, and has shown some promise in early clinical trials with relapsing forms of MS.

To be in enrolled in this trial, you have to be between the ages of 18 and 55 with a diagnosis of primary progressive MS. It is a randomized controlled trial, which means that you'll be randomly assigned to either receive the study drug, which is an oral pill that you take once a day or a placebo pill. Those pills will look exactly the same, and the patient and the provider will not know what treatment the patient is getting, and that is to reduce bias and placebo effect.

You would then come in for regular visits to monitor for safety and side effects from the drug, which may involve things like blood work. Again, to check things like liver function and kidney function. It would also involve assessments, so looking at your physical exam and how that changes with time, and looking at progression and disability. 

So, those are all the trials that we have currently enrolling or will soon be enrolling, though we do expect more to be coming soon. So, if you're interested in participating in research, you can always reach out to your provider and see if there are trials that you would be eligible for. And let us know if you have any questions. Thank you.

Kristi Epstein, APRN-CNP: Thank you so much, Dr. Cartwright. That was a wonderful kind of review of our clinical trials. And as Dr. Cartwright mentioned, if you're interested in participating in a clinical trial, please reach out and discuss with your provider who can connect you with our clinical coordinators. 

And now we're going to move on to the Q&A portion of our show tonight. So, we're going to get to all those wonderful questions that you had. And I'm going to go ahead and turn the show over to the director of our service line, Dr. Tirisham Gyang. Many of you know her. She's a wonderful clinical warrior within our clinic and she is our fearless leader. So, Dr. Gyang, if you would like to join us now, we can get straight into our Q&A portion of tonight's event.

Tirisham Gyang, MD: Thank you very much, Kristi. And good evening, everyone, and thank you all for attending this session. This has just been a wonderful session with a lot of learning, a lot of just exciting information. I will ask all our panel members to turn on their cameras so that we could go ahead with some of the questions that came up. We try to answer as many of the questions that came through the Q&A, so if you have a specific question, we try to get to it. Unfortunately, we are not always able to get to all the questions. 

So, I will try to maybe highlight some of the important questions that came up and see if we could get some thoughts from our experts that are here today. One question that came up that I think would be relevant to talk about, somebody asked a very interesting question about smoldering MS. Which I think goes very well with the topic about inflammation in MS.

Today we talked more about the acute inflammation that comes as a form of a relapse. But somebody pointed out in the question that there's another type of inflammation that can happen in MS that is a little bit different from the inflammation that we see in terms of a relapse, where we see new lesions or you have new symptoms and you're in the hospital. 

So, maybe I'll ask Dr. Poisson to maybe give us a few words about smoldering MS and maybe how that type of inflammation is a little bit different from what we would see in a patient that has a relapse or active disease that we can actually target with steroids.

Kelsey Poisson, MD: That's such a great question, and I think it's something that's a huge area of future research, because there are a lot of questions about why does my MS get worse even if I'm not having an attack or a relapse? And so, a lot of the overlap with smoldering MS does come with progressive MS, and so these are very similar concepts, where we're not having a relapse or an attack, but our symptoms may be slowly getting worse over time. 

The addition with the smoldering MS is that there may be some smoldering inflammation. And you'll see the drug companies with their little match that's only partially lit up to talk about inflammation that we may not know about or may not see, because the MRIs that we do are not perfect. They give us the best thing that we can see based on lesions in the white matter, but they don't really tell us the entire story about MS.

And so, there's a lot of research into more detailed MRIs that could look for, is there this inflammation that we can't really detect with our current methods in things such as paramagnetic rim lesions? Which is a lot of words to say that certain lesions can have characteristics around the outside of them that may cause them to expand a little bit more. 

And is this associated with more symptoms or more disability? And can we stop that inflammation before it causes progression? And so, that's a really big focus in a lot of studies with MRIs, but also with figuring out how do we know if someone is at risk for smoldering.

Tirisham Gyang, MD: That's great. I mean that's wonderful. It just tells us there's a lot more that we're discovering about MS. And hopefully we'll have more studies on smoldering MS and maybe we will have treatments that could target this low-lying inflammation that keeps going on very slowly in the background and can cause a lot of disability. 

Next, I think there were a few questions about disease-modifying treatments and maybe some of the risks of medications like that. There were a few questions about getting colds or getting infections. I think somebody talked asked about can Kesimpta maybe increase the risk of breast cancer? A lot of these medications have risks, and we always talk about these risks with you when we're about to start you on a medication. We always try to weigh risks and benefits, like how much benefit are you getting from a medication versus the risks. 

I'll move to Dr. Hansen. Can you maybe elaborate on some of the risks of some of the disease-modifying drugs that just overview, big picture overview, how we balance some of those risks, how we monitor patients when they are treated with a disease-modifying drug?

Margaret Hansen, PharmD: Yeah, absolutely. So, most of our MS medications are immunosuppressing. And so, sometimes our biggest concerns then are the risks of infection. People may be more susceptible to especially common infections, colds, flu, upper respiratory infections that you might get exposed to. Because when you're exposed to those infections, your immune system might be impaired in its ability to make new antibodies or give you future protection. 

So, the thing we recommend most is that you take very easy steps to decrease your exposures to viruses, bacteria that can cause infection. Frequent hand washing, staying away from others who are already sick, and then using your own personal judgment as to if you want to wear a mask in certain situations. I wear a mask on an airplane all the time now because I'm tired of getting a cold or a flu when I travel. So, those are situations that you can decide on your own if you feel more protected wearing a mask.

Vaccination is another cornerstone of preventing infections. So, anyone who meets with one of the pharmacists, myself or my colleague, we'll always talk about vaccinations and what might be recommended to reduce those risks, but those can go a very long way to reducing your overall risk of infection. 

Also, part of immunosuppression is an increased risk for cancers or malignancies. In general, these tend to be things like skin cancers, which are overall very common in the population as it is. I know there was a specific question about Kesimpta and breast cancer. To my knowledge, there was one case of breast cancer in the clinical trials, but it was not a 0.93%. It was one of five cases, and the overall malignancy rate was 0.5%, and the other drug that was studied was 0.4%. So, not a significant difference compared to Aubagio, which is what it was studied against. 

Take away as far as malignancy risk with our medications, is the best thing you can do is be up-to-date with routine age appropriate cancer screenings, mammograms, colonoscopies, cervical cancer screenings, and skin cancer screenings if indicated.

Tirisham Gyang, MD: Yeah. Thank you so much, Dr. Hansen. And Dr. Hansen is part of our team and she's very helpful when we're starting very potent medications. And I'm sure a lot of you have gotten to meet her at one of our clinic sites. 

Another group of questions came about the adaptive devices Dr. Brook Gaul talked about. I am happy she addressed a lot of the questions because I do not know the answers to a lot of them. Maybe one of them that we could tackle here would be what kind of... somebody asked about Medicare. Is this something that Medicare would cover? Could you just give us some insight into you know, are some of these covered by insurance? By Medicare? How do we navigate about going over the cost of some of these devices you talked about?

Brooke Gaul, PT, DPT: Yeah, so Medicare will typically cover splints for hands and orthotics, like a custom AFO like I talked about. And then also walkers, rollators to an extent. Sometimes there's a co-pay. It used to be $37 when I started. I'm sure it's different now. Typically, they'll cover canes. 

But one of the reasons I mentioned, consider what you need now versus what you need later. Wheelchairs, for example. The wheelchair that you get, you have to keep for at least five years. If it's in a state of disrepair, they would rather repair it than upgrade you from a manual wheelchair to a power wheelchair. And so, that's why sometimes people will use the power scooter before they're ready to upgrade.

Things like the Bioness or walk aid, which are the ankle cuffs that have functional electrical stimulation in them and the Bioness for the arm cuff. I have personally not had success with insurance covering it, but I know people have. We'll always submit documentation. I'll send supporting articles and we work with the Bioness company. We have a representative who will help me know exactly what I need to put in my notes detail-wise to support insurance coverage. But even with all of that, sometimes they still don't. And then as far as a tub bench or shower chair, Medicare will tend to cover that as well.

Tirisham Gyang, MD: Okay, thank you so much, Dr. Gaul. I mean it seems like they are some of them that are covered, so definitely try to figure out which of these can be covered for you at any specific time. There's a lot of questions. I don't think we're going to get to all of them. 

Dr. Cartwright, there was a question about maybe studies on remyelination. There've been a few things that have been tried for that and unfortunately none of which are primetime or are being actively explored right now. But maybe just give us an overview of the greatest needs of research in MS. We've gone over progressive MS and maybe some of the remyelination that is a big need and there may be future trials that could tell us a little bit more.

Kaitlyn Cartwright, MD: Yeah. Progressive MS is the one where we have the least effective treatments for, and so both primary progressive MS and secondary progressive MS are areas where we definitely need more research. Another area that has been looked at is remyelination and helping recover from MS relapses and demyelination. There is a lot of ongoing research from that. A lot of it is still in the basic science research stage where we're looking at remyelination in mouse models of MS. And so, some of that is not quite to the point where we're looking at it in patients yet. But we're hopeful that that's something that is coming down the line.

Tirisham Gyang, MD: Yeah. And I always tell my patients, stay tuned. The fact that we don't have any studies now doesn't mean we're never going to have studies. So, we always try to highlight the studies we are working on here so that people are aware of what's going on, but that changes all the time. So, yeah. Thank you. 

And maybe we have time for one more question. I think I'll go to Dr. Poisson. I mean, I think you mentioned something about when you have a relapse, maybe we need to figure out do we need to change the disease-modifying treatment. There was a question that came up about natural, can we do natural options instead of disease-modifying therapies? So, maybe you could talk a little bit about the different natural or lifestyle options, and how does that compare to doing a DMT? Do we do one versus the other? Do we do all? What's the best way to mitigate against future relapses?

Kelsey Poisson, MD: Yeah, that's a great question. And I know there's a lot of focus right now on are there natural approaches? And if there are side effects that we're nervous about, can we avoid them? And I think the main takeaway here is that unfortunately, none of these other measures replace the efficacy of a disease modifying therapy. 

And so, it's something we consider an adjunct or an addition to help prevent relapses or in general, make you feel better. But for example, the lesser effective disease modifying therapies are about 30% effective. And so, all of these other measures, there are some studies that will tell you that there can be a very mild decreased risk of relapse such as with certain exercise regimens or certain diets, but all of those measures are going to be significantly less effective than even the least effective MS medications, that we don't even tend to use as much anymore for patients with more aggressive disease because they are not as effective as newer medications.

But some of these things can be greatly helpful for managing symptoms in multiple sclerosis, and they may even have a very slight benefit in preventing relapse. And so, some of these things are exercise. And so, we tend to say at least, and target would be 30 minutes, five days a week, or even just starting somewhere and slowly building up. Just anything that gets your heart pumping a little bit or to the point where you are having trouble keeping a steady conversation going, for example. 

Another thing is healthy diet. There are a lot of different diets that have been studied and one is not really superior to another. So, some of these really restrictive diets are not necessarily going to help you more than just eating a healthy Mediterranean-type diet. So, lots of good healthy fats, fish, vegetables, fiber, things like that. 

And we know that even outside of relapses, these things can greatly help for MS fatigue, for sleep, for numbness, tingling and all sorts of things. There are so many benefits of these adjunctive measures, but we don't recommend it to replace the disease-modifying therapy.

Tirisham Gyang, MD: That is a wonderful answer. I mean, I completely agree with that. And we have in our center, Kristi has a very wonderful clinic that she runs called the Quality of Life Clinic, where we strongly emphasize those lifestyle changes, whether it's diet, exercise, vitamin D, all the natural stuff. These are excellent, we want you to do these, but there's no evidence that says that can replace your disease-modifying drug. You still need the disease-modifying drug if you're having relapses. So, we want to do both. 

Well, I mean it's 7:30, it's time already. We still have a lot of questions. And I just want to thank you all for listening. I thank you to all the panelists for being here. And I'm just going to hand this over to Kristi to finish this up.

[Text on screen:
Thank you for joining us today.
- For post-conference questions or information, visit wexnermedical.osu.edu/mscommunity.
- You will be receiving a survey via email to share your experience from today's event. ]

Kristi Epstein, APRN-CNP: All right. We want to thank you again for joining us today. And I want to let you know that all of these patient education symposiums are recorded and you can find them at www.wexnermedical.osu.edu/mscommunity. If you're having a boring weekend and you want to watch all of our presentations, we encourage you to do so because some really, really wonderful information there. 

If you need appointments, you can call our offices at 614-293-4969. And we are going to get to all those questions that we were not able to answer in real time. So, look forward to answers to your question. 

And we once again encourage you to talk with your provider. If you are interested in participating in a clinical trial, we can hook you up with our clinical coordinators. And if you have interest in any of our specialty clinics such as the Aging and MS Clinic, the Quality of Life Clinic, again, speak with your provider and you can get a referral into the specialty clinics.

We want to thank you again for joining us and we look forward to seeing you at our next patient education event. Again, I would like to reiterate, visit our website www.wexnermedical.osu.edu/mscommunity and you can see all of our recorded events including this one, which will be posted after a period of days. 

Again, we will attempt to answer your questions. And you will receive a survey via email so that you can give us feedback and help us to improve these events. Thank you once again for joining us. And thank you to all of the wonderful colleagues here present tonight at this presentation. Have a wonderful evening and keep doing what you do. Thank you.

[Text on screen:
Multiple Sclerosis Education Series
- Thank you for joining us today.]