Ask Aaron – Your Opportunity to speak to a Neurologist about Living Well with MS

04:09 Understanding supplements for MS

10:52 Managing fatigue in MS

14:14 Exploring disease activity tests

17:25 Clinical trials for older patients

21:27 Menopause and hormone replacement therapy (HRT)

25:46 Tinnitus and MS

27:06 What is inflammation?

31:03 Gut health and MS

38:34 Remyelination drug trials

39:09 Red light therapy

42:07 DMTs for older patients

48:00 Neurologist testing

56:02 Pharmaceutical companies and DMTs

01:05:40 The impact of weather on MS symptoms

01:09:11 Neuroplasticity

01:12:39 Medication or treatments for incontinence

01:13:16 Swallowing

01:13:49 MS diet

01:16:46 Fermented foods

01:17:31 JC virus and natalizumab

01:19:32 MS and the Epstein-Barr virus

01:20:33 Ocrevus

01:25:19 MS and living further away from the equator

01:28:19 Paradigm shifting

Dr Aaron Boster

Dr Aaron Boster is award-winning, widely published, and board-certified neurologist specialising in multiple sclerosis (MS) and related CNS inflammatory disorders. Witnessing his uncle’s diagnosis with MS when he was 12, he and his family came to see a lack of coherence in the way MS was treated at the time. That experience informed Dr Boster’s drive to do things differently.

Dr Boster has been intimately involved in the care of people impacted by MS; he has been a principal investigator in numerous clinical trials, trained multiple MS doctors and nurse practitioners, and has been published extensively in medical journals. He lectures to both patients and providers worldwide with a mission to educate, energise and empower people impacted by MS.

Regina Beach

Regina “Gina” Beach is the producer of the Living Well with MS podcast. She was diagnosed with Relapsing-Remitting MS with incomplete remission in 2021 and has been following the Overcoming MS Program ever since.

Gina teaches virtual accessible yoga and meditation and runs retreats in the UK and abroad.

Lyndsey Housden (00:02.466)
So hello, everyone. I can see people already coming in from the waiting room. So it’s great to see you all here today. OK, so we’re in for a real treat this evening. It’s great to see some reactions there already as we welcome you back to the Living Well with MS webinar series, season six already. So I’m Lindsay Houston. I’m an OMSer and I live with relapsing and remitting MS.

I am a Program Facilitator for Overcoming MS, and I’m joining you today from Axbridge Somerset in the UK. So in a moment, I will be welcoming Aaron Boster and my co-host Gina Beach to the virtual stage. But before I do, I just want to run through a little bit of housekeeping just to help keep this webinar running as smoothly as possible. So you’ll notice that the session is being recorded and you’ll receive a link via Zoom to access the recording next week.

Because this is a Zoom webinar, you will only be able to see the guest speakers. However, this is still an interactive session and you will be able to ask, hopefully have your questions answered, but ask your questions using the Q &A tab on your screen. So please do submit your questions and please also note that bear in mind that our guest speakers cannot comment or advise on any individual circumstances as you can imagine.

So please do try to keep questions general so that everyone can benefit. Yeah. We will do our best to answer all of your questions. However, we do receive quite a lot. So please don’t be disheartened if we can’t answer them all in the next 90 minutes. Also, myself and Gina are not medical experts. So if we struggle a bit with pronunciation, please know we are trying our best. Also, if you experience any technical problems during the webinar,

Just try exiting your browser and re-entering using the link that you received in your email. We recommend using Chrome, which seems to work the best. Lastly, well, almost lastly, we’ve tried to make this webinar as accessible as possible. And today we are using subtitles. So if you like these to be turned on, you can use the CC live transcript option at the bottom. OK, so finally, a last

Lyndsey Housden (02:22.986)
Small and important request, as you leave this webinar, and I hope you still have this in your memory as you’re leaving, a short survey will pop up automatically. And as tempting as it may be to click that away, if you can find a short moment just to run through those questions, we would be really grateful. OMS is made for you and with you, the community, so your feedback will be used to shape future webinars and events going forward.

So if you can find a moment, we would really appreciate it. Okay. Without any further ado, it gives me great pleasure to welcome Aaron Boster and Gina Beach to the stage. Hello, Aaron. Hello, Gina. In the background as always. So before we start with the questions today, Aaron, I would just like to ask if you wouldn’t mind to briefly introduce yourself just for those people who perhaps haven’t met you yet.

Dr. Aaron Boster (03:17.036)
With pleasure. Well, howdy. My name is Aaron Boster. I’m an MS neurologist in Columbus, Ohio in Midwestern United States, where I run the Boster Center for Multiple Sclerosis, where we care for about 3,000 families impacted by MS from around the globe. We’re very actively involved in MS clinical research as well. So it’s been a joy to liaise with you guys and come on here and answer your questions live. And I’m really excited to be invited back. Thank you for having me.

Thanks for being with us and thanks for that great introduction, Lindsay. It was lovely. I’m Gina Beach. If we haven’t yet met, I’m the producer of the Living Well with MS podcast and I live with relapsing MS. I’m also from the state of Ohio and I live in South Wales. So Erin, it is so wonderful to have you back. We’re going to dive right in with our first question.

What supplements do you recommend for people with MS? The Overcoming MS program recommends Omega-3s and Vitamin D. This question asker also takes a B complex and they take flaxseed oil to get their Omega-3s. Do you have any other supplement recommendations for your patients?

So this is a really, really appropriate question. I don’t think there’s a family that I interact with in clinic that doesn’t ask this at some point during our time working together. And I hate it when allopathic doctors say things like, it doesn’t matter what you eat because it does matter what you eat. And anyone that has experimented with sugar and ultra processed foods may notice that their MS symptoms uptake big time.

First and foremost, my first request before we talk about supplements is to think about what we’re supplementing because you’re supplementing your diet, right? And I think if there’s an opportunity within your diet to pick whole foods, single ingredient foods, then you’re gonna be choosing some really excellent quality food for your body.

Dr. Aaron Boster (05:23.648)
And I guess I would rather someone spend a little extra time and money at the supermarket to buy salads with lots of different colors of fruits and vegetables than I would have them buy a supplement. All right, so I just want to state that in a perfect environment, we would really alter and up our food game before we got into supplements. That stated you and I both live in the real world where sometimes it’s very, very hard to pull off perfect eating and perfect diet.

And that’s where I think supplementing some of the nutrients is valuable. So I share the ideas with overcoming MS that my first and foremost supplement is going to be vitamin D3. So it looks like when you look at the total, the totality of the data, low levels of vitamin D correlate with bad MS outcomes.

So when you look at groups of humans with MS that have a low vitamin D, they tend to do less well than groups of humans with a high level of vitamin D. And there’s three ways you can get vitamin D. So if you go out in full sun and a holter top or naked for 15 minutes, you’ll absorb 5,000 international units of D3. Of course, here in Ohio, you might get frostbite on some private parts or your neighbors might call the police. And so sometimes that’s not feasible and it may not be feasible in South Wales either.

Another way to do it is to eat an entire salmon, but I mean the whole fish. So the amount of fish that you would have to eat, like fatty fish to get your D3 levels up would unfortunately be like the entire salmon. And I don’t think like, I don’t know anyone that can do that, or at least not on a consistent basis. so the value of a D3 supplement is it’s a really easy tolerable way of boosting your D3. D3 is better absorbed in the human body than D2.

And so I oftentimes am asking my Ohioans to take around 5,000 international units, but we’re using blood levels to guide us so that we know how much to give. So then what’s next? Next, I like a multivitamin. And the reason I like a multivitamin next is in case we’re not getting all the micronutrients and minerals and the other vitamins, if we add a multivitamin in the mix,

Dr. Aaron Boster (07:47.274)
even if you have sort of a yucky American diet, we’re still gonna get a lot of the odds and ends that we need. So I like a multivitamin. Next, I like omega-3. Just like the overcoming MS suggests, I think that supplementing omega-3 is really fantastic. In one of my YouTube videos, I made an error and I said that I recommended flaxseed oil. And I shouldn’t have said that. I should have said flaxseeds.

because both have omega-3, but the flax seed also provides some fiber that you miss when you do the oil. So I really think flax seeds is an outstanding way of getting omega-3s. Fatty fish is another way of getting omega-3s. And a lot of my patients take an omega-3 supplement, and I think that’s outstanding.

Yeah, I take an algae oil supplement every day. And then I also eat chia seeds and hemp and there’s a lot of walnuts. There’s loads.

So you’re getting it from a couple different, you’re getting it from a couple of different angles. And I really like that. I think that’s outstanding. Then we get into, then the supplement discussion becomes a little bit fractured and esoteric. If my patient is struggling with energy, then I may, so I may recommend levocarnitine or creatine. I may recommend a B complex. If my patient is struggling with spasticity or insomnia,

or if my patient is struggling with some GI issues, then I oftentimes recommend different types of magnesium. So it really kind of depends on what specifics we’re trying to tackle once we get beyond that. I am a big proponent of probiotics for almost all of my patients. And along with that prebiotic fiber, I’m a big fan of. And so those are things that I’m very keen on.

Gina Beach (09:41.358)
Those are great. And I think that the best, sounds like there’s some general recommendations and then talk to your team about what your symptoms are and what might be done to supplement wise to alleviate those. What are?

One last real Sorry, I apologize for being long-winded on a Sunday.

feel like I’m a little glitchy.

I apologize. I was going to say before we move on to a different topic that I going back to my initial comment about paying attention to quality of food. Oftentimes I will notice a patient has a pretty solid vitamin list, but they’re not getting enough protein in their diet each day. They’re not getting enough fiber in their diet each day. And so paying attention to getting a gram of protein for kilo of body weight.

and making sure that you’re getting like 28 grams of fiber. Those are very, very important things, but I oftentimes try to tackle that with actual real food as opposed to supplements. Okay, now I’ll stop with the supplements.

Gina Beach (10:46.83)
Possibly on the supplement level, we might deal with this next issue, ways to reduce fatigue. So Overcoming MS recommends 30 minutes of exercise per day. This can be spaced out as a good fatigue reducer, but what else can people do if this is a debilitating symptom for so many people?

Pick a number between 3 and 12.

6.

Let’s do six. And we won’t do exercise because you already did that one. So we’ll do six in addition to exercise. So getting restorative sleep is massively underappreciated. That means seven to eight hours of time when you’re asleep, not seven to eight hours when you’re in the bedroom, Zoom and doom scrolling, but like, when you’re actually snoozing. And sometimes that’s a little bit harder than it sounds to initiate sleep on time, to maintain sleep, but

getting seven, eight hours of sleep is really, important. And many of my patients separate from having MS, they’re getting five or six hours a night. And so they’re making themselves exhausted before they even like start their day. All so that’s one. So the second one that we’ll talk about is the value of a power nap. So I think a lot of people above the age of six, they detest taking a nap. know, they’re an adult and they’re not gonna nap.

Dr. Aaron Boster (12:06.818)
But for someone impacted by MS, energy reserves plummet quickly, particularly under certain circumstances like under times of stress or when ill or when it’s hot outside. And so taking a half an hour to an hour power nap is one heck of a way of recharging your battery, right? So that’s another tool that I want people to judiciously use. That’s two. Three is removing sugar from your diet.

And if you don’t believe me, I dare you to remove sugar for a month and then call me and tell me if you have more energy. And I know the answer already because I’ve done this with hundreds of people and it always has the same result. People are like, wow. So number three would be to remove sugar from your diet. Number four is to drink more water, which sounds like something your mom would say like drink more. But the reality is that being dehydrated makes you fatigued.

And if you’re hydrated, you’d be shocked at how much more energy you have. So is that four or five? Four, okay, thank you. I can’t count to six. So number five is to remove medicines which contribute to fatigue. So many American MS patients are taking upwards of seven plus medicines a day, which is too many.

And many of those medicines with good intentions have side effects of fatigue. Medicines for the bladder, for spasticity, for pain, for depression. Many of these medicines can actually make you tired. So looking through that list and removing medicines that are naughty is a good idea. And then number six, the last one is treating depression. Because many people impacted by MS are at high risk of suffering from depression. And if your mood is depressed, it will make you tired. So

There are six things in addition to exercise that we could do to try to up the energy game.

Gina Beach (13:58.562)
That’s great. Thank you so much, Aaron. I think those are always good reminders because there are things we can do for ourselves that is not necessarily pharmaceutical based or in this case, perhaps even removing pharmaceuticals to help with symptom management. So what are your thoughts on the Octave MS disease activity test? First off, this is a new one for me. What is it? And second, is this a good predictor of new active lesions?

So the Octave DA test is a validated legit real lab test. It’s real. It’s also in the United States FDA approved. And I will humbly say I don’t know of the status in the EU. Like I’m not sure. I just, don’t know that information. It’s not covered by insurance providers in the United States yet. And so

Let me tell you a little about the Octave test. The company, that’s the name of the company, Octave, they approached me two, three years ago and said, we have this test and we think it’s going to predict disease activity and we don’t have a lot of data yet and we want to test them in your patients and they’re going to have to pay to have it done. And I said, go away. Like I said, no. And I wasn’t ready to help them sort that at my patient’s expense. And I said, come back when you have data.

And so they did. They came back two years later with beautiful data they had collected where they proved that this test is real and that it’s predictive of inflammatory activity. So the DA test is a lab test. It’s a blood draw and it looks at 18 different blood biomarkers, including some of the things you may have heard of like neuro foam at light and GFAB.

And all of those labs are translated into one single number called the DA or disease activity test. And that number is predictive of disease activity. So if that number, the DA test is high, you’re at increased risk of attacks or new lesions on your MRI. That’s what that means. And if the DA test is low, that correlates with low disease activity. And so

Dr. Aaron Boster (16:19.086)
In a future state, which will probably be in the next couple of years here in the United States, once this test is approved to be paid for by third party payers, I will very likely get it every three months in all patients. Because I think it’s that useful. Right now, because it’s not covered and it can cost the family out of pocket anywhere from zero to $300, depending on the sliding scale and

and bluntly for some patients that I take care of, that’s just simply not affordable. I’m doing it as one-offs. I’m not doing it routinely. But the reason is because of the cost point to my patients, because I think that the data is very, very valid.

That’s great. So this looks like it’s moving in the direction of actually looking at biomarkers, being able to use those biomarkers to predict and treat accordingly. So that’s actually really exciting and hopefully it will be open to more people in the future. I’m going to pass you over to Lindsay for the next set of questions.

Thanks so much.

Lyndsey Housden (17:21.969)
So the next question is, are there any trials for older males living with relapsing MS that you know of?

So traditionally when we study multiple sclerosis, particularly relapsing multiple sclerosis, the age range, excuse me, that we enroll is 18 to 55. And the reason that traditionally we enroll 18 to 55 is not because 17 year olds don’t have MS or 56 year olds don’t have MS, they do, but it has to deal with the statistical likelihood that the human being is going to have change

during the period of time of trial. Someone who is, let’s say, 65 with MS is statistically less likely to have an attack than someone who is, say, 45. So when you’re enrolling the trial, you’re trying to capture events. need, statistically, mathematically, people to have events so you can compare two different treatments.

you tend to enroll patients between 18 and 55. There’s the problem with that. There’s actually like a million problems with that, but there’s two big problems with that. Number one, people continue to have MS after 55. So studying people beyond 55 is very valid because we want to be able to match patients with experience in trials. The second thing is even though the attack risk goes down when you’re a little older,

the risk of progression goes up. So we need to those people. We just need to be studying something different. And that’s what you’re seeing in modern clinical trials. You’re starting to see trials that extend enrollment from 55 to 58 or to 60, or even in some rare cases, like into the early 60s, like 62. Now, the people that are listening to this might be saying, well, gosh, you know, it’s not like 60s old, you what about someone who’s 61?

Dr. Aaron Boster (19:32.11)
I would say to you, yes, yes, I agree. But I am glad that we’re starting to see exploration into slightly older age groups because that’s very, very important. Are there trials available for you right now? Yes. And it has nothing to do being a boy, but there are trials available for people over 55 and relapsing MS. And we’re doing some of them at my center right now.

Yeah, how would somebody find out about those? They speak to their neurologist or?

So I think that answer is probably country specific in some respects. Let me share the answer from the United States, but I’m sure that many of the same tools could be used in other parts of the world. So one way to do it is to talk to your neurologist and say, hey, are you aware of any trials that I might be eligible for? Another way to do it is to reach out to some of the charitable organizations like Overcoming MS, like National Med Site, like these organizations sometimes.

you guys have a repository of, I’m aware of the trials in this region, let me pass that information on. So that’s a resource. In the United States, there’s a website maintained by our government called clinicaltrials.gov, G-O-V. And clinicaltrials.gov is a record of every MS clinical trial anywhere.

And so that’s a really easy resource. You can go to clinicaltrials.gov and then search multiple sclerosis and you’ll see where all different trials are being done throughout the universe. So those are some ways of trying to do it. Another way, if you live near a large academic institution, like a large university, call the department of neurology in that university and say, hey, are you guys doing any trials? Those are ways that you could learn about that.

Lyndsey Housden (21:17.132)
Yeah, fantastic. That’s some really great, great tips there. I’m sure that everyone can find one of those as an option. the next question is, please could you advise on menopause and taking HRT?

Yes, and this is my favorite question thus far today. It is such a relevant question. So three to one, women have MS more than men. And the average age of people with MS is getting older because people are living a long time and they’re getting older. And so many, many, many, many people that I take care of are women who are peri or postmenopausal.

And there’s been some significant research studying the impact of menopause and perimenopause in MS. So let’s throw out some definitions just for a level-setting education. When a woman is in her late 20s, her estrogen levels start to go down a little bit. And then shortly thereafter, her other sex hormones, so progesterone and anti-malarion hormones, start to go down.

Evolutionarily, probably because like we don’t need to keep making babies into our 80s or something like this, right? So those numbers, so those levels are starting to drop and around age 45 ish women may notice that they’re not having a regularity to their menstrual cycle. So whereas before they could set a clock to when they had their period, now maybe it’s spreading out, it’s happening, it’s skipping a month, it’s happening early, it’s kind of changing. And this is because the estrogen levels are falling and

If you look at the average age of 55 years, most women have stopped having a menstrual cycle. And if you go a year with no period, then we call that menopause, right? Which is a function of the estrogen levels dropping. Whenever estrogen changes during onset of puberty, during menarche, during menopause in this example, the MS disease changes its behavior. And when estrogen goes down, MS disease can go up.

Dr. Aaron Boster (23:22.7)
Now this has been studied and what we’ve learned is in women with MS who are perimenopausal or menopausal, menopause, we see some changes. Number one, the attack rate actually goes down a little bit, which is good. That’s great. Number two, the risk of progression goes up, which is bad. All so to talk about that for a second, if you look at a group of men with MS and a group of women with MS, the women get worse slower until they reach menopause.

And then they get worse at the same rate that men do. Lastly, there are a host of really yucky symptoms which can increase in perimenopause and are very common in MS. So I’m going to rattle them off and you might be like, well, wait a second, I’m experiencing some of these. Things like fatigue, irritability, insomnia, increase in anxiety, increase in depression, increase in emotional liability.

I’m just kidding.

Dr. Aaron Boster (24:22.496)
Increase in baseline of pain for some reason, increase in problems with bladder, trouble with bowels, trouble with sexual function, hot flashes. There’s just a host of like yucky things. the fact that we don’t talk about this more bothers me because it’s a really big deal and it affects many of my patients. Now, here’s the kicker. Right. So if I had a drum roll like I I’m very

Ready for the drum roll.

You can treat, you can make this better with medicine and it’s actually not medicine, it’s hormone replacement therapy. So here’s the jam. All right. So this is the secret sauce. We want to put women, I want to put women with MS who are perimenopausal on hormone replacement therapy. want estrogen only topical hormone replacement therapy. Why? Because I’m trying to replace estrogen and if I do it topically, there’s no risk of blood clot.

And if I do it with estrogen only, there’s no real increased risk of cancer. Like you might see when you do dual therapy. So I really think that’s the thing to do. And I recommend that to the vast majority of the women I take care of who are of perimenopausal or menopausal stage.

Well, that’s great. I’m just yeah. Okay. That was one for me there. Thank you for that. So last question from me for now. Have you treated patients with Pulsatil? Now I’m trying to say this correctly. Pulsatil. Yeah. is this condition associated with MS?

Dr. Aaron Boster (25:51.502)
I’m not a a feminist.

Dr. Aaron Boster (25:56.814)
So tinnitus is the doctor word which means ringing in my ears. And tinnitus is really, really common and it’s very annoying. Pulsatile tinnitus means the high pitched squealing frequency, the ringing, correlates with my pulse. So if my pulse is like, like I’m going to tap my pulse right now. I’m kind of making this up for a bit so you can see it. Imagine there was a swoosh, swoosh, swoosh, swoosh, which was timed with my pulse.

So pulsatile tinnitus is something that you want to pay attention to because it begs the question if there’s a problem with some of these vessels, okay? Has nothing to do with MS. So we treat tinnitus from all different causes all the time in neurology, but it’s not a pulsatile tinnitus. I don’t associate it with MS, but it’s absolutely something that you want to be looked at in case it’s because you have some occlusion of one of these blood vessels and that’s why you’re hearing a swoosh.

because that might need to be corrected.

Great, thank you. Okay, I’m going to hand back over to Gina. you there? Thanks a lot, Aaron.

Right. So here’s another education one. We know that MS is an inflammatory disease. What causes inflammation? What is inflammation? How does this relate to our condition?

Dr. Aaron Boster (27:16.558)
That’s a great question. So the body is remarkably brilliant and complex and it creates inflammation on purpose for good reasons. So I’ll give an example of when your nephew sneezes in your face. So your brother and sister-in-law come over with the nephew and you pick the nephew up and he sneezes in your face.

And he gives you a virus that he picked up at daycare. So he sneezes right in your face and now you get to have the virus. It goes in your nose and then you have this virus inside you. Well, your immune system is the part of your body that identifies that virus as a bad guy, as a foreign invader. And then your immune system launches an attack to kill the virus. The tools they use to launch the attack are inflammation. They’re inflammatory.

So that really means they bring water into the area and they bring white blood cells into the area. And those white blood cells, things like lymphocytes, they have weapons, literal weapons where they attack and kill the virus. And the tools they use are inflammatory. So when you, for example, get stung by a bee or an ant, the swelling in your arm is your…

immune system’s protection against the toxin from the bite, right? Or against the, and so bringing in the swelling and the redness and the hot and the discomfort, that’s actually your immune system fixing the problem. It’s a positive thing, inflammation. But like most things in medicine, too much of anything is bad and there needs to be a balancing act. And so sometimes the inflammatory activity of the immune system is overzealous.

and it’s applied incorrectly, right? And so your immune inflammation can be used inappropriately thinking it’s fighting off a bad guy when it’s really attacking your own supercomputer, your brain, and that’s an autoimmune condition MS. So some inflammation is good, too much inflammation is bad. Really, when you delve into the immune response of MS, it’s actually very, very complex, and it’s a network, and what you see is

Dr. Aaron Boster (29:44.492)
the regulatory cells, which would normally regulate the degree of inflammation, like the cops, people with MS don’t have very many regulatory cells. So the part of your immune system that wants everyone to calm down and walk single file is not present. It’s like, it’s not there. The part of your immune system, which goes buck wild and like goes crazy and whatnot, there’s too many of those inflammatory cells. so it’s the problem with MS is there’s an imbalance

of that immune response. It’s too pro-inflammatory. And what a lot of the medicines do is they try to pull it in line so that we can increase the regulatory, let’s calm down and sit quietly, part of the immune response, and we can dampen the hoorah part of the immune response. And so that’s really the story of inflammation as it relates to MS.

Yeah, and everything we do from like the exercise, the eating whole foods, taking a DMT, all of that works together to try to help tamp down that inflammation.

That bad, reactive inflammation.

Because we still want acute inflammation if we cut our finger or if we stub our toe. Yeah, or if our nephew sneezes on us. Yeah. Our next question is, are gut problems related to MS? And I’m going to say from personal experience, yes, yes, many of us suffer with gut issues. Tell us about them and what we can do about it.

Dr. Aaron Boster (31:12.834)
Yeah, Gene is 100 % correct. So a little infrequently discussed phenomenon is that people with MS have messed up bowels, right? And it’s not a very friendly topic, right? It involves things like poop. But the reality is that a lot of people with MS have messed up bowels. And a lot of people have one of two things. They either have significant constipation.

or they have sort of like an IBS type picture where they have constipation and then have diarrhea, then they constipation and diarrhea. But very few people poop normally in my clinic until we fix it, right? And we don’t know exactly why people with MS have abnormal gut motility, but there are some things that make sense. So there is a gut brain communication. Yep, there’s a communication between the gut and the brain. There’s also a gut immune.

communication. So these organ systems are actually talking to one another. Now let’s take it a level deeper. Your gut is lined with bacteria, healthy bacteria, like on purpose, and they live inside you with our blessing and they really help us. They’re synergistic, which is a doctor word for we’re friends, we help each other out. And what these gut bacteria do is they process our food for us. They’re like,

factory workers that help us break down the food, particularly fiber, and break it down so that we can absorb it and use it for nutrition. And we refer to those bacteria as the microbiome. So you have a microbiome, and it’s all the populations of gut bacteria and all this stuff like that. And everybody’s gut microbiome is a little different. And we actually don’t have like a proven perfect gut microbiome, like this is it. And you

A lot of your gut microbiome is determined by things you eat. like families have similar gut microbiome. like mom, dad, brother and sister who eat together probably have very similar microbiomes. Turns out that people impacted by MS have this thing called dysbiosis, which is a Scrabble word, which means you have jacked up microbiome. You don’t have the right gut bacteria. Now why? We don’t know, right? But what we know is, is that

Dr. Aaron Boster (33:37.288)
in this this biotic situation, people with MS, the gut microbiome is not processing their food properly. It’s not metabolizing their food properly. And it may even contribute to MS. But the last comment is like being studied aggressively. That’s like a debate. All right. So so in clinic, I talk a lot about fixing or correcting or altering the gut microbiome using probiotics.

because a probiotic is a capsule typically with billions with a B of healthy gut bacteria. And we’re guessing which ones we need because we don’t know. So I like to have a lot of bacteria strains, like at least six when I’m looking at a product. And I like the number of the bacteria to be very, very high, like billions. And then we take one of those once a day. And what you’re doing is you’re repopulating the gut microbiome and you don’t have to do it with a pill. You could do it with natural forms.

of probiotics like kimchi or sauerkraut or any fermented foods like pickles. And then I also like my patients to take a prebiotic fiber. Fiber is an indigestible solid, like sawdust is a type of fiber, although I’m not recommending you eat sawdust. But if you did eat sawdust or some other type of fiber, what you put in your mouth, you can’t digest. Now your microbiome can digest it and they break it down into short chain fatty acids and

but also this, this fiber is like a sponge. And so it’s soaks up water and it mixes with the stool and it makes a big bulky stool. That’s easy to hold onto and easy to pass. So by adding in, adequate daily water, by adding in daily exercise, by adding in fiber and by adding in probiotics, we can do a lot to help people’s gut.

Now there’s a lot more to talk about, that’s kind of like 101, getting started.

Gina Beach (35:35.86)
in addition to eating real food, whole food and lots of Because that feeds your gut. Yeah, right. All of that for sure. yeah, will second the, know, fiber gel, the fiber supplement can be really helpful even if you are already eating lots of fruits and vegetables. Sometimes you just need a little bit more.

Let me share a little bit about, I can’t poop because I think oftentimes the biggest problem that makes patients really unhappy is they are massively constipated. So, so let me just talk about some other things that we can do in addition to fiber, probiotics, exercise and water, which all help you poop. There’s a thing called the gastrocolic reflex. So when you put something in the stomach gastro 15 to 20 minutes later,

the colon tries to evacuate. It’s a reflex. In the setting of MS, when there’s been spinal cord involvement, you may not be made aware that it’s happening. Like you might not feel it, but it is happening. And so the highest success rate for pooping is actually when you wake up after your first hot tea or coffee.

Dr. Aaron Boster (36:56.738)
because when that hot beverage hits your gut, it triggers this gastrocolloid reflex, even though with MS you might not know it. So in the morning, you have your hot coffee, 15 minutes later, go sit on the toilet and try to poop, even if you don’t feel like you have to. And then I’m gonna teach you a secret weapon. So get in close, all right, because I don’t want just anyone to hear about this, all right? Put your finger in your butt, all right? So gastrocolloid reflex can be

augmented by digital rectal stimulation. Now, before you go, right, you’re an adult, you have your fingers, it’s your tush, you’re by yourself alone in the bathroom. So get over it, put the finger in the rectum, move it in a circle. There’s millions, literally millions of nerves in the rectum. And by doing that, it sends a message up to the spinal cord, hey, hey, hey, time to poop. And it lets the spinal cord know what’s supposed to happen.

The reason I like digital rectal stimulation, aside from the fact that you always have your finger with you and you can wash your hand when you’re done, is that it works at the time you do it. Some of my patients have used traditionally like a suppository in the tushy, and that can kick in like four hours later when they’re at work, which is like not very nice. So use the digital rectal stimulation along with the gastrocolic reflex as a powerful way of getting you to poop.

And do it at the same time every day to train your colon that this is the time we open and not

That’s right, yeah, now it’s time to poop. Exactly right.

Gina Beach (38:29.46)
All right, I’ve asked you this question before, but we’re always looking for updates. What’s the latest on remyelination drug trials?

So I am excited that the research is ongoing and I have no new updates. We will have updates in Ektrems next month, right? So the next time I talk to you, I’ll be able to tell you some updates. And there’s ongoing work looking at some things like Metformin, looking at things like Climastin, but I don’t have anything new to share today.

That’s okay. We’re still really optimistic and we’re excited that there’s so much work. Cool. All right. I’m going to pass you back to Lindsay. Thanks.

100%.

So the next question is, is red light therapy beneficial for people with MS?

Dr. Aaron Boster (39:15.372)
The real answer is I don’t think we know. Like I think that’s scientific answer because I don’t think it’s been adequately studied to say authoritatively yay or nay. It sounded to me the first time I heard it like bunk. Like the first time I heard it, was like, well, that’s weird. That doesn’t make sense to me. And when I started to look at some of the research, there actually is some like molecular level things that might actually change for the better when you use red light therapy. So.

it’s not as goofy as I thought when I first read about it.

I’m not sure if I know what red light therapy is actually. mean, I know of infrared, but I think it’s that or.

Yeah, so there is a theory that exposing your body, your skin to red light, a light that you have in your that can actually create some immune changes, which might be helpful. That’s the theory. I have three rules, rules that I apply when considering a non-allopathic medicine or therapy. So

So I’m an MD. So I went to like doctor school where we learned to give people medicines, right? And as you and I are both aware, many, many, many things outside of medicine help humans, right? But some of that stuff I wasn’t taught about, which doesn’t make it not work. It just means I wasn’t educated about it. So I have three rules. Here are my three rules. Number one, it can’t be dangerous. So red light therapy is not dangerous. Like it doesn’t hurt your vision or hurt your skin. It’s not going to burn you. So like, it’s not dangerous.

Dr. Aaron Boster (40:52.588)
Number two, it can’t be too expensive and you can buy a red light rig, you know, and I have many patients that have and only you know whether it’s too expensive for your budget. If your family was tight on money, I would not recommend investing in red light therapy because I can’t look in the eyes and promise you that it works. If you have superfluous cash and you can afford it, okay. Number three, it can’t be instead of something that I know works.

So for example, if you said to me, hey, Dr. Boster, I’ve been taking this disease modifying therapy for my MS, but I’m going to stop the disease modifying therapy and in place of it, I’m going to use red light therapy. I would be worried about that. However, if you said, hey, Dr. Boster, I’m taking this disease modifying therapy and I’m going to continue to take the disease modifying therapy and I’m going to purchase this red light therapy, which I can afford and I’m going to do it in addition, I would say, great.

stop.

Dr. Aaron Boster (41:51.54)
Anecdotally, some of my patients have told me that they don’t notice any benefits and I have other patients that feel like it’s maybe helped with some things. So that’s my take on red light therapy today.

Okay, thank you. The second one is, DMTs be effective for older people who have lived with MS for a long time?

Yes, 100%. So even though we study these medicines mostly in quote younger people, they absolutely can still be of great value in quote older people. And it’s important to keep in mind that the medicines do more than stop attacks. They also slow progression of disability and they slow brain volume loss. Now I can tell you anecdotally with authority.

I’ve had many patients when I changed practices, for example, and they worked with another doctor for a year before they found me again, let’s say. They come back to me off therapy and they’ve gotten worse. And so I’m a very strong believer that DMTs are very helpful, agnostic to age.

Great, thank you. So the last one from me is how is it possible to have stable MRI scans yet have worsening symptoms?

Dr. Aaron Boster (43:07.832)
So that’s a very important thing to understand. And so let’s talk about that a little bit. And I’m start the discussion by using an analogy. Okay. So let’s pretend that someone drives their car into your living room. So you’re in your living room and they drive their car into it and they rip the hole in the living room wall. There’s a car there and it’s very messy. And they clean the car up, they get the car out and they get all the stuff out of all the debris.

and you and your family are sitting in the living room and there’s a hole in the wall. Every time it rains the rest of your life, you will get wet in your living room. Right? Even though in the future there’s been no more accidents, there’s been no more crashes, but now there’s structural damage to your house and there’s a hole in your living room and every time you’re in your living room, if it rains, you will get wet.

Let me use a second example. Pretend that I owned a firearm, which I don’t, but pretend I did, and I blow a hole in this wall. All right, so I blow a hole in the wall, and then I don’t repair it. I just leave it there, right? And it’s a talking point when people come over and say, oh my gosh, remember when you blew a hole in the wall? 20 years from now, when this building that I’m in ages and gets older and the materials in the building age, that wall falls first, even though nothing’s happened within 20 years. Okay.

Now with those analogies in mind, let’s think about what happens in the setting of multiple sclerosis. When you have an MRI white spot or a T2 lesion, that’s brain damage. That’s an area where your brain is damaged and it repaired itself, but not a hundred percent. And it wears out faster than the other parts of your brain. So when you have brain damage from MS,

and it can cause a deficit. That area of damage will wear out faster than the other areas as you age. And as a result, you can see worsening of symptoms independent from new disease activity. Very commonly, a patient will see a doctor and they’ll feel gaslit. You know, because the doctor is saying something to the effect of, honey, congratulations, your scan’s stable. And the patient’s saying,

Dr. Aaron Boster (45:30.178)
but I can’t walk very well. And they’re saying, but honey, you haven’t had an attack. You’re doing good. And the patient says, yeah, but I can’t stay up past dinner. See, well, honey, your exams hasn’t changed. doing great. Say, yeah, but I’m falling. And here’s the thing, both are true. It is wonderful there’s no new attack. It is wonderful there’s no new MRI spot, but it doesn’t change the fact that the person is also getting worse.

Mm.

Lyndsey Housden (45:59.286)
Yeah.

And so I think in the 90s, a lot of doctor type people thought of MS as binary, attack, no attack, spot, no spot. And that’s only part of the disease. The other part of the disease is progression of disability where areas of damage can wear out as you get older.

Yeah, yeah, so it’s a sort of a weak area that will quicker become, progress to become worse.

Correct. Yeah. So someone says, you know, when I was 25, I had a transverse myelitis, my right leg got weak and it got better. Now I’m 55 and I’m starting to have some trouble with my leg. But when we do an MRI, there’s no new spots. Well, there’s an old spot and it’s wearing out.

Yeah, there’s so many other questions I have now just in terms of prevention and thinking about what you can do, knowing that if you’ve had an attack in certain areas, we might get to that later. you have anything sort of directly to respond on that, it’s such a big question.

Dr. Aaron Boster (47:01.158)
I think I would just say that there’s a reason why women take oral birth control. So if you have two kids and you start oral birth control, you still have two kids. They don’t go away just because you started birth control. And my joke is, if you want to know why you’re on birth control, go hang out with your two kids. I’m joking. Your kids are wonderful. Of course they are. But my point here is that we’re doing something with birth control proactively to prevent an unplanned event.

I view disease modifying therapies in a similar vein where you’ve already accrued some brain damage, you’ve already accrued some deficits, I don’t want you to have any more. And so I want to bring everything to the table, including a disease modifying therapy and including the pillars of OMS to prevent future damage so that you can get old normally and your brain can age naturally and you don’t accrue disability as you age.

Fantastic. Yeah, thank you. Gina, over to you. Thanks a lot.

in line with what you just talking about. What objective tests should neurologists be doing every time you see them to judge whether you’re stable or progressing?

So I think there’s three types of information that the neurologist collects trying to figure out how the human’s doing. One of them is what the human tells us, which is the most important information we learn. See, you, Gina, are a Gina expert. You know more about you than a spouse, than a computer program, than a neurologist, than an MRI. Like you’re with you all the time. You’re you expert. And if I can ask you questions and shut up and listen to your answers,

Dr. Aaron Boster (48:38.112)
I will actually learn the vast majority of the things I need to learn to help you bluntly. So we can collect that information different ways. We can give you forms that you fill out, patient reported outcome measures, and I’m very fond of that to capture your voice and quantitate it. And we can say things like, hey, Gina, how are you doing? And then we can shut up and then you can like tell us and we can listen. So that’s the most important way that I learn about how you’re doing.

The second most important way is a tie between what I call the MS Olympics, which is like the testing and then exactly. then the objective structural data. So let’s talk about both. So the structural data, this is like when I get an MRI once a year, when I get an OCT of the thickness of the back of your eye, when I get a bladder ultrasound, like those are structural tests which teach me if we have new structural damage.

And those are a second way, in addition to capturing your voice that I learned about how you’re doing, because you may tell me I am crushing it and you are crushing it, but I see new spots on your scan. So that would be picking up, we’re not doing as well as we think we are. The third way which addresses the question asked is objective data. I don’t think, well, I mean, I have opinions which I’ll share, but I think what’s important is we’re collecting some kind of objective data. It doesn’t have to be the kind I collect.

but I think that the neurologist needs to be doing something objectively when they see you. And when I say objective, I mean it in the medical sense of like a test. Okay. So for example, when people come to the Boster Center for MS, twice a year, we do a MS FC test. So what is that? That’s low contrast visual acuity, right? Reading an eye chart, which is very dim. It’s a matching test for cognitive function called the symbol digit modality test.

It’s the nine-hole PEG test, which is a quantitative function of upper extremity and a timed 25-foot walk for patients that can ambulate. So that’s a way of capturing validated reproducible data, which is clinically and statistically relevant for how you’re doing. All right, and I do that twice a year with my patients. Another way to do it is to do a neuro exam. And that’s, you you and I were kind of pantomiming, you know, the neuro exam a second ago.

Dr. Aaron Boster (51:00.172)
And the neuro exam is a way of looking at the various nervous systems like the vision system and the coordination system and the sensory system and to see if it’s changed from the last time we looked at it. Now I do MSFC testing more than I do neuro exams because it’s more accurate in predicting disability. But that doesn’t make doing an MSFC better or worse. And my take home from this answer is not.

your doctor should do what I’m doing, it’s that they need to be doing something on a reliable basis so they can look for change. So if I see that your timed 25 foot walk has increased by 50%, something’s wrong. If I see that your ability to touch my finger in your nose is now off and you’re missing your face, something’s wrong. In the same way that if I see a new spot on an MRI, something’s wrong.

And in the same way, if you tell me, Aaron, I’m falling, I know something’s wrong. So all three of those are critically important when trying to sort this out.

Great. The next question you might have to help me with a little bit. What is Clippers chronic lymphocytic inflammation with you tell us what is How is it diagnosed, treated? What’s the prognosis?

I got you, I got you, I got you, okay.

Dr. Aaron Boster (52:21.036)
This is my favorite question that was asked just because it’s like a super immunology nerd, like Aaron type of question. like whoever asked that, thank you. So people don’t come with rule books, right? So when you, God forbid, have double vision, you don’t get like an email telling you why. All you know is like, it looks like you have two husbands, right? Or if you’re slurring your speech, like you’re drunk,

Like you don’t get like a memo in the mail, like of why, all you know is like you’re slurring your speech. And so what a doctor, what a neurologist does is they make a list of what it could be. And that’s called the differential diagnosis, right? It’s a list of like all the things it could be. So if anyone that went to med school, if you gave a symptom, if you said slurred speech, they will rattle off. It could be this, this, this, this, they make a list. And when someone has multiple sclerosis,

We also have a differential diagnosis for things that could mimic MS. And so when you’re being worked up for MS and we’re trying to prove you have MS, we’re also trying to prove you don’t have all the things that mimic it on the differential diagnosis. Clippers syndrome is a part of the differential diagnosis. And something that’s a little bit funny is that here in Columbus, Ohio, there’s a little league baseball team called the Columbus Clippers.

So when Clippers first came out, all my friends and I giggled about that because we’re dumb. So Clippers is a brain condition. It’s a disease which can mimic MS kind of, right? And if you understand the name, it actually explains what it is. So chronic lymphocytic inflammation. Let’s break that down. Chronic means it’s not one and done. It’s a constant problem. Like MS is a chronic problem. So chronic.

Lymphocytic means that the lymphocytes, which are the white blood cells involved in MS, are also involved in this process. So lymphocytic inflammation means you have elevated lymphocytes. So the B and the T cells are elevated. So chronic elevated B and T cells. With pontine, para vascular enhancement, what does that mean? That means that the base of the brain, the part of the brain called the pons, lights up when you give contrast.

Dr. Aaron Boster (54:46.71)
And it lights up, it looks like little speckles in the, base of the brain. It has a very specific appearance. And the last is R S responsive to steroids. And when you give steroids, like gets better, like weirdly, like really fast, like strange, like you give steroids and suddenly they’re better. So you have clippers, chronic lymphocytic inflammation with pair with pontine perivascular enhancement.

and responsive to steroids. So that’s Clipper syndrome. And it’s not common, but when you do MS for a living, you see people that have brainstem problems, slurred speech, double vision, things like that. And you get an MRI thinking that maybe they maybe have MS and they don’t, they have Clippers. And then you’re really happy because you give them steroids and you make it better really fast. And these are people that take steroids, typically like some form of steroids almost for life to suppress this chronic inflammation.

That’s a lot of nerd words for the middle of the afternoon.

And so this is something then that would be ruled out over the course of your diagnostic process with your neurologist.

Yeah, yeah, you rule it out just by looking at an MRI. I can tell you in one glance, yes or no.

Gina Beach (56:02.19)
So social media is full of opinions and there are accounts that suggest maybe that DMTs aren’t as effective as the pharmaceutical companies claim or that some doctors are too close to big pharma to be trusted. Can you share your perspective on this, the ethics that you need to follow, how effective are DMTs to

Yeah, yeah, your opinion as a professional.

Yeah, this is a really important and great question. And you’re right. They talk a lot like the internet is kind of like the bathroom wall of modern era, right? Where people write stuff. And there’s a lot of conspiracy theories out there. Like I think people enjoy conspiracy theories. So one of the conspiracy theories out there is that there’s a bunch of pharma companies and government agencies and doctors that are all in cahoots to prevent us from curing MS.

because we make all this money. And if I can use professional language, that’s complete bullshit. And it really is insulting because I’ve dedicated my entire life to trying to help people live their best life with MS and find a cure. And I don’t think there’s this massive multinational conspiracy trying to keep this small group of people ill. That’s just, that’s dumb. That’s not true. Now,

Dr. Aaron Boster (57:30.67)
Governments don’t develop medicines. They don’t do that. Universities don’t develop medicines. Pharmaceutical companies make medicines. And pharmaceutical companies don’t have any patients, right? They’re a company. Doctors have patients. So in order to develop a cure or a treatment,

a pharmaceutical company partners with a doctor like me. And we work together to identify patients that are eligible and to enroll them into clinical trials to find out definitive answers as to whether things work or not. And that is not based on opinion, like if we feel like it works, it’s based on math and science. So,

The thought that is propagated in the internet that the drugs don’t actually work and it’s a conspiracy is false. And it’s not a matter of debate. It’s not a question, right? Because you can prove it with science. Like for example, I am short. Like I’m five, five and a half. I am a short human being. And that’s not a debatable point. Like that’s not an opinion where like someone says, no, I actually think he’s kind of tall, right? Objectively speaking, I am a short dude.

And objectively speaking, the science holds up by itself. So when we tell you that a drug has an X percentage ability to decrease a disease by this amount, that’s not an opinion that’s proven by science. Moreover, sometimes patients will say, I’m concerned about this doctor because they interact with a pharma company or they’re paid by a pharma company. And I have interacted with lots of pharma companies and I have been paid by lots of pharma companies.

And so I have several opinions about that. So which doctor do you want taking care of you? The guy that goes to all the meetings and is intimately involved in the cutting edge of what’s new, bringing that to his clinic, or the guy that doesn’t interact with any industry and doesn’t know anything about what’s going on and is only able to peddle the things that were made 20 years ago?

Dr. Aaron Boster (59:49.768)
I would submit that you might want the first guy or gal, not the second. And so in many ways, I think it’s easy to throw stones at doctors. And let me take it a step further. I will at times take time off work and travel to another city or state or even sometimes another country. And I will be paid by a pharma company to educate a group of 20 doctors about a new drug.

or a group of 50 patients about a new drug, and I will be paid to do that and then I will fly home. During that time, I’m not in my house, I’m not sleeping in my bed, I’m not spending time with my children, I’m away from my family, and I’m taking vacation from work. Should I be reimbursed and paid to educate 20 doctors on how to be better at a job? Should I be paid to educate 50 patients on how to up their game? I would submit the answer is yes.

And so I have zero concerns or worries about my ethical behavior. And I think what I’m doing is a service. And I think it’s fair to be reimbursed for that. So those are some of my opinions as it relates to pharma in the development of disease modifying therapies and doctors like myself who interact with those parties.

Yeah, thank you. And it’s really helpful to put it in the context of the clinical trials and doctor education and patient education, because we all know that the research moves slowly and we are all frustrated by this and you’re frustrated by it. We’re frustrated by it. And so it’s easy to want to find the person to blame, but we’re just we

can partake in trials, we can be proactive with our health team, and we can be as patient as possible, because now is a better time to be diagnosed than 25 years ago before there were so many options.

Dr. Aaron Boster (01:01:48.374)
Amen. That’s exactly right. And if it wasn’t for people impacted by MS who are willing to be heroic and volunteer their bodies, we would have no therapies. And if it wasn’t for doctors who wanted to do better than the status quo, we’d have no investigators. And those two parties by themselves are inadequate to find a cure. We have to have pharmaceutical companies that are helping

in the science labs mixing the chemicals together to figure out what to try. So it really takes a village and we want to be active village members.

Yeah, great. Thank you so much. All right, passing you back to Lindsay.

Gina, how are doing Aaron? Yeah, have a break for a moment. That was a great answer that yeah, wow. Okay, I’ve got a longer question for you in the way it’s written, but it’s quite a straightforward question. for people with progressive MS who are wheelchair users, who are no longer eligible for or do not have access to disease modifying therapies, yet experience mobility and strength decline despite physiotherapy.

What additional strategies can help maintain strength and function beyond not smoking, moderating alcohol and following a healthy diet?

Dr. Aaron Boster (01:03:07.532)
This is a very tough question. And I’m assuming that the person is writing from outside the United States. For example, I’m aware that in Great Britain, there’s certain criteria that if you aren’t ambulatory, then they might not continue your own medicine. So I’m making some assumptions that we might be talking to someone in that neck of the woods, right? So humor me. My initial response is that of a maverick.

and I would treat them anyways with an off-label medicine because that sounds like bullshit to me. And I’ll give you an example. something similar to this can happen in the United States with different third-party payers that refuse to pay for a drug. we also in the US may deal with something similar to this. So what do do? I’ll give you an example. There are some drugs that are off-label that are really, really inexpensive.

And there’s a medicine that was invented for a different disease called rheumatoid arthritis. The medicine is called a Rava in the United States. That’s the trade name. The generic is called leflunamide, which I didn’t make up that word. Leflunamide is a pill for rheumatoid arthritis. When you swallow it, the first metabolite is a chemical compound called teraflutamide, which is the chemical compound for a Bajia, which is an MS medicine. Now here’s the thing.

In the United States, Abagio is like $8,000 a year or a month, excuse me. Whereas Arava, generic leflunomide is like 15 bucks a month. Wow. And so I prescribe Arava and even if I can’t get it through the insurance, typically the patient can afford that medicine. so my initial response is that of a maverick. I’m going say, well, forget that. I’m going to treat you anyways.

And then we would game out like if there’s a treatment even off label that we might be eligible to use.

Lyndsey Housden (01:05:03.734)
and presumably the side effects etc. would be the same as with how it’s used for rheumatoid.

Correct. I can say that with some degree of anecdotal authority because I’ve done it for a decade. But so that’s what so I would say, okay, I’m really glad that we’re doing physiotherapy, I would want to use assistance devices like the sciatic neural sleeve or like the, like the HyperX shell or whatever. And yes, diet. Yes. I mean, all those things are critically important. And then I would want to amp that up further by using an off label medicine if I could pull it off.

Yeah, great, thank you. Another short question, why do MS symptoms get worse in hot and cold weather?

because nature’s too generous and because the nervous system changes in response to weather. So, so Ohio is a good place geographically to experience this because in Ohio, in the Midwestern United States, we have four seasons, like four very discrete seasons. And in the summertime, it gets quite warm. So like over a hundred degrees Fahrenheit. In the winter, it gets quite cold below freezing.

So a lot of my patients in the winter, when it’s cold outside, their spasticity worsens. Spasticity is a situation where opposing muscle groups are not playing together nicely in the sandbox. When you’re trying to do this and this muscle has to shorten, this muscle has to relax, and your spinal cord tells your tricep to relax. But when you have MS, sometimes the tricep didn’t get the memo.

Dr. Aaron Boster (01:06:45.452)
So while you’re trying to do this, you’re also trying to do that at the same time. And then you have a spasm, a cramp, a charley horse, et cetera. Now spasticity is always worse under two conditions. When you’re still like sleeping or sitting and number two, when it’s cold out. So many of my patients wake up in Ohio in February and they’re like Tin Man. They’re super stiff and they’re really, really stiff and unpleasantly so for the whole winter.

Right? Because spasticity is worse when it’s cold out. Now take that same person, same house in Ohio, and now make it August. It’s really hot outside, like 100 degrees sometimes. And so when patients get overheated, their core body temperature can rise like half a degree, and that runs all the metabolic processes in their body faster, and those areas of damage in their spinal cord can short circuit, and they can see heat-induced

fatigue or motor fatigue. So that same patient that was stiff in the winter is now floppy in the summer. And the good news is we can anticipate that and we can use stretching regimens and keeping them warm and Baclofen medicines and whatnot to help them in the winter. And then we can use medicines like Ampira and staying out of the heat and whatnot to deal with the summer. But

It’s not uncommon that people in packed biomass can have heat sensitivity or cold sensitivity or more often times both.

Yeah, yeah. So just preparing for that and having some exercises or maybe massage or something to keep you warm, etc. To try to dampen it a bit, yeah.

Dr. Aaron Boster (01:08:29.314)
that. And then I also feel like a lot of those medicines that I mentioned can also for some people be a game changer. so the medicine Ampura, for aminopyridine or Delphampyridine or in Europe, Phamphampera only works in about a third to half of people that try it. It’s a twice a day pill you have to pay for, but when it works, you can get overheated and you don’t melt. And so that’s pretty awesome when it works. So oftentimes when we give it to someone and it can take two months to figure out if it works.

If it works, they won’t let us take it away. They’re like, I’m not giving this back because I’m really finding value in it. And if they don’t have that Lazarus response, it didn’t work and then we stop it.

Okay, great, thank you. So last one for me for now. Can neuroplasticity really improve either physical or sensory impairments in MS? If so, what is the evidence and how should this be undertaken?

So the evidence is ubiquitous. You can see all kinds of clinical studies that demonstrate in rat models, neuroplasticity, in adult human models, neuroplasticity. But I’ll share with you an anecdotal story of neuroplasticity. So there’s a gentleman who was my algebra teacher when I was in high school. And years later, he became my patient with PPMS. A very dear man.

And he happened to be extremely tall, like six, nine. Like, so, like he’s a big guy, right? And this story occurred in an era before there were medicines for PPMS. So he wasn’t on a medicine because there wasn’t any. And he was walking with a walker, but it was becoming increasingly harder for him to do it. And he was having some falls and he was starting to use the wheelchair more and more. And he didn’t like that. Neither did I.

Dr. Aaron Boster (01:10:19.884)
And so we hatched a plan. He took a walker, a throwaway walker, like a cheap one. And he took a life jacket and he took them both into a swimming pool at the YMCA, which is a community workout facility. And he two to three times a week walked laps. Now keep in mind that he wasn’t able to do that on land, but in the water he could.

He would hold himself up with a walker and he had a life jacket on and he would walk laps like two, three days a week. And he did this for three months. He came back to see me three months later and I’m in my office doing something, getting ready to see him. And my medical assistant comes in and says, Dr. Boster, your patient will not do his time to walk until you come in the hallway. OK, so I go in the hallway and there he is, this giant of a man.

standing there with his wife next to him and he’s got his walker and he says, are you ready young man?

Yeah.

He picked up his walker and he walked 25 feet. Wow. Walker touching the floor. He did that by sheer force of will through exercise, through neuroplasticity. Now he continued to walk with a Walker for years before he eventually lost his ability to walk and he’s passed on. He’s dead now, but he taught me some.

Dr. Aaron Boster (01:11:50.978)
He taught me two things. He taught me that neuroplasticity is real. And he showed me what it means to fight. Because he did. I don’t need to quote a trial to tell you about neuroplasticity because I’ve seen it.

Mm.

Lyndsey Housden (01:12:01.272)
So

Lyndsey Housden (01:12:07.896)
Wow, thank you for sharing that. Yeah, beautiful. That will stay with me. And I’m sure many others here as well. Gina, are you still with us? Yeah, we’re going to the live questions now, so I’m gonna come off screen.

All right, we are in the quick round. All right, Aaron, so take a breath. And we’re gonna try to do one minute per question to get as many of these in as we possibly can. Starting with, what are your medication or treatment recommendations for incontinence? We’ve already talked about number two. What can we do for the bladder?

There’s a lot of things you can do for bladder, including timed voids. So schedule a bathroom break at the top of every hour, because if you always empty, you’ll never be caught wet. Drink two thirds of all the fluid you’re going to drink in the first half of your day, and then stop after dinner so you’re not making urine when you go to bed, because you make urine for six hours after you stop drinking. And there are many medicines which can expand the bladder so that you can hold all the urine and finish the TV show and then go pee. Check.

This person’s having discomfort swallowing. Is this an MS symptom? What can be done for swallowing issues?

Yes, it’s an MS symptom. It’s a very common MS symptom. It’s also a very scary MS symptom because food in the lungs can cause aspiration pneumonia, which can kill you, very serious. And you need to get you to the speech pathologist. You get you to the speech pathologist and you let them do a modified swallow study and they can help you fix the problem.

Gina Beach (01:13:43.714)
Yeah, it’s basically like physical therapy for your mouth. It’s so definitely good to out. So the Overcoming MS program recommends whole grains and lots of them. What is your take on low carb diets like keto or the carnivore diet?

If you did a Google search for MS diets, you’ll find a bunch. And one of the things that you’ll notice, if you really get into this, is that some of them are opposing diets. Like one diet will say, for the love of God, don’t eat red meat. And then another diet will be like, eat lots of red meat. And then you can be left going, brr. So, so biously, I think the overcoming MS diet is probably my favorite MS diet.

Right. Which doesn’t make it better or worse. I just, it’s what I like the best. And the overcoming MS diet doesn’t involve a lot of red meat. does a lot of fruits and vegetables and grains and like fishes included in things. And I think that’s just like profoundly healthy. when you look at the walls protocol and overcoming MS and swank and all these different diets, the one common thread is food quality. And so.

Thank

Before we get into a so-called pissing match about whether like beef is bad or good, let’s first agree that whatever it is we’re eating, we want it to be of high quality. Cause I think that’s actually more important. There is evidence that some evidence that for example, certain foods like red meat are inflammatory. And so they’re cut out of a lot of MS diets. There’s other diets that don’t think that’s so important. And if you look at the overcoming MS literature,

Dr. Aaron Boster (01:15:30.158)
they can prove what they say. Like they can show you data. It’s not made up. And I think it’s a very healthy option. I live in the Midwestern United States where we live on cows and a lot of my patients and myself included, eat a lot of meat. But I will challenge people sometimes if they want to experiment and remove, let’s say red meat as an example and do that for three months and see what they find. And I think that’s fair.

So did I answer your question or did I talk in circles?

No, I think that’s really great. think the most important thing is that we crowd out all of the packaged food, the highly processed food, the junk food with real food, whether or not you want to take that next step to following a strict diet, we’re here for you. And we’re also welcoming if you are dabbling in the idea of being more plant forward, because every step towards eating more whole foods is a step towards hopefully better health. Back to Lindsay.

She said.

Dr. Aaron Boster (01:16:42.318)
So it’s probably safe. I don’t have a problem when my patients do it. You absolutely want to make sure you’ve talked to your provider and they’re okay with it because they want to check to make sure it doesn’t cross react with anything.

Dr. Aaron Boster (01:17:02.126)
So fermented foods are things that are pickled. So for example, kimchi is delicious and sauerkraut is delicious and pickles, pickled eggs, anything like that are examples of fermented foods. And fermented foods have naturally occurring probiotics. And so it’s a great way of getting like probiotics without buying without taking a pill.

Dr. Aaron Boster (01:17:38.786)
Yep. So, so there’s a virus which has infected half of people over 30. We have millions of viruses that live in us and we don’t care. They don’t hurt us. They just hang out. And one of them that half of us have been exposed to is called the JC virus. Under very, very unique circumstances with certain types of chemo or with certain special medicines like Tysabri, Nettlesimab. If you’ve been JC virus positive,

and you take the medicine, there’s a risk of a very scary brain infection. Now, the brain infection is called PML, progressive multifocal leukoencephalopathy, and it can be fatal. It’s extremely rare. And so when people are going to take a medicine like Tysabri, we check their blood to see if they’ve been exposed to the JC virus. In my clinic, if you’re antibody positive for the JC virus, you’re still

permitted to take Tysabri, you just have to understand the risk of taking Tysabri. And that risk for some people might be one thousandth of a percent. And for other people, it might be close to one percent. And so then we have an engaged conversation about what that means. And then you help me figure out, are you comfortable with that risk or not? And then that helps us decide if we take the medicine. If someone

is on Tysabri, we check the JC virus every three months because if it’s negative, we want to know if it flips to positive. And if it’s positive, we want to know if it goes higher because that helps guide us to take you off. And we check MRIs at least once a year to make sure that we don’t see MRI findings suggestive of PML.

Gina Beach (01:19:26.584)
Great. I feel like a little bit of a broken record. What’s the latest on MS and Epstein-Barr?

broken record so so

This is so exciting. I feel like people are so excited. When are we going to get it? When are we going to get a treatment?

So no updates the way that you and I are hoping. We now have understood that you basically have to be exposed to Epstein-Barr at some point in order for you to develop MS, we believe. That doesn’t mean you had mono and missed high school. It just means you were exposed to Epstein-Barr when we checked your blood. And then that begs the question of if we could prevent Epstein-Barr, if we could do a vaccine against Epstein-Barr, might we be able to prevent a

a generation from getting MS. I think the answer is probably that we could. And so we’re all very, very desirous of an Epstein-Barr vaccine, which has not materialized yet, but it’s actually being studied.

Gina Beach (01:20:22.626)
Great, well just cross our fingers and we’ll just ask you every time you’re with us.

Deal, yep, and I will tell you all the updates, I promise.

Okay, great. Do you know if having a family history of breast cancer means that ocrevus is not a good DMT option? Can you talk a little bit about the cancer risks? I know that like for me, I’m on Mavenclad, there also is a hypothetical cancer risk. just this kind of relates back to your JC, I said, question.

So whenever we talk about a medicine and we talk about the risk benefit of a medicine, we’re saying what’s the good part that we get from taking it and then what’s the potential risk we have from taking it? And each person has to do this kind of risk benefit assessment themselves. When we studied TISAV, excuse me, when we studied okravis in clinical trials, six women in the trial got breast cancer, which made all of us go, crap.

Hold on. Does the drug cause breast cancer? And it was studied and the answer was no. And the drug was released with a warning. It says it might because we didn’t know. Now we know. Now there’s 170,000 people post marketing that have taken ocarvus. Over half have boobs because most people with MS are women. And the risk of cancer, breast cancer, is the same as the general population. And we can say that with authority because we have such large numbers.

Dr. Aaron Boster (01:21:50.786)
that it allows us to compare 170,000 people against population level epidemiology. And so we know that there isn’t an increased risk. And that’s very, very important. And having a family history of breast cancer doesn’t change that. So you keep in mind that one in seven women have breast cancer. There will be someone in your family who’s had breast cancer just mathematically or statistically. Unfortunately, that’s not a contraindication to getting the access to the medicine. And I’m not…

remotely making light of cancer because cancer is scary and it can kill you, it’s bad. But I beg you, you have to place the risk benefit of the drug inside the risk of the disease. For example, I’ll use the mavenclad that you were talking about. Mavenclad has a small increased risk of cancer, which is real, but we can monitor by doing surveillance. And if someone

So we’ll look, I don’t wanna risk cancer, so I’m not gonna take the drug, but they forgot that the drug prevents MS from getting worse. And so I really think that we have to contextualize small risks into the greater picture of what we’re trying to do.

Yeah, absolutely for sure. And that definitely factored into my decision. I’m high JC positive. And after switching to every six weeks decided that MavenCled was going to be my next best option. you’ve talked about Okravis and I think Obagiio as being good DMTs for people with primary progressive MS or progressive forms of MS. Is there any other approved medications that you recommend for people who are in the progressive stage?

So the only drug that’s FDA approved for primary progressive MS is okravis. We off label will use other B-cell depletters to treat PPMS because of logic, but it’s not approved for that purpose. And so we will use other B-cell depletters like rituximab, Truxima, Breumvee, Qicemta in progressive, primary progressive. I will use, I have used mavenclad a few times in progressive MS.

Dr. Aaron Boster (01:24:02.932)
there’s some data that mays it may work in secondary progressive MS, but I think the data is really poor and I don’t believe the data. And so I don’t personally buy into doing that. probably the biggest excitement in the field right now is the recent outcomes for a trial called Hercules and the Hercules trial studied a drug called total Bruton. I didn’t make up that name. Total Bruton is a new class of medicine and MS called a BTK inhibitor.

Okay, so a short question but one that’s probably important to certainly important to me and many other people. How do you encourage someone to keep going as a young person with a love of life but a constant fatigue?

And it’s being studied a lot in MS right now. And thus far it hasn’t worked in relapsing MS, but it did work in the Hercules trial in secondary progressive MS. So this is a population of people that used to have attacks, but haven’t had attacks in a long time, and they’re getting worse. And when they took tolobrutinib, they slowed down worsening by 29 % compared to placebo, which is a really big deal. So right now that’s being fast tracked at the EMA and at the FDA.

And we think that we may see approval as early as next month. And so we’re very, very excited and very hopeful about that.

That’s amazing. I feel like a lot of us have been following the BTK journey for several years at this point. So that’s really cool to see it getting ready to come to market. Can you give us the lowdown on the equator issue? Why is MS more common in countries the farther you get away from the equator?

Dr. Aaron Boster (01:25:28.366)
So this is less true today than it was in the 60s because of this thing called the airplane. So nowadays, people move around. Like for example, a young woman from Ohio may move to Wales, right? And pre-airplane travel, if you lived in Wales, you’re probably gonna die in Wales.

And if you lived in Ohio, you’re probably going to die in Ohio and you didn’t like move all over the world. So pre ubiquitous airplane travel, we noticed that the incidence of MS seemed to be linked to the distance from the equator. And in the sixties, there was like no MS in Africa, like on the equator. And there was a lot of MS in Finland and Sweden and Norway. And what we found was the farther away from the equator you went,

the higher incidence of MS. And one of the theories as to why has to deal with exposure to vitamin D. So we make vitamin D when the sun hits our skin, there’s a chemical reaction. And low levels of vitamin D, pre-puberty, increased risk for MS. So if you live on the equator and you’re a bronzed god because you’ve lived your whole life in the sun, your vitamin D is probably elevated

compared to if you’re a pasty white person who lives in like Northern Denmark, right? Because of the exposure to the sun. And it turns out that low levels of vitamin D pre-puberty increase risk for MS. So that’s the prevailing theory. There’s other theories that deal with cleanliness. And so the more sterile or clean a society, the more autoimmunity we see. And the theory is if you live in an area of the world where hygiene is lower,

Yeah.

Dr. Aaron Boster (01:27:22.54)
then you’re exposed to bugs and viruses and bacteria more frequently as an infant. And you build a more robust immune response as a result, like a healthier immune response compared to if you sneeze in the nanny, scrubs you down in Purell. You touch something and then they sterilize your hand and put it in a glove. We live in these near sterile environments in some Western countries. And so,

Yeah, fantastic. Thank you. Great. So we’ve come to the end of this session. I’m going to hand back over to Gina just to wrap up. I’m going to come off camera. So thanks, Erin. Thank you.

Another theory is as you move away from the equator to speaking gross generalities, you go from developing countries to developed countries with higher hygiene rates. And so maybe you see an increase in MS because of that. Thirdly, if you look at the distribution of genetics, people share genes. And so a population of people, and I keep using Denmark as an example,

shares genes and they have genes which increase their risk for autoimmunity compared to populations in like sub-Saharan Africa. So there’s a lot of different reasons why we see this distribution. I gave you three theories, but it’s becoming less relevant as people move around.

Great. All right, we got a couple minutes left. I’m going to pass you back to Lindsay for the last few questions.

Dr. Aaron Boster (01:28:41.303)
Alrighty.

Dr. Aaron Boster (01:29:00.856)
So it involves paradigm shifting. So let’s talk about paradigm shifting as we wrap up. Many of us learn to do something one way and we don’t ever do it differently because we just get used to doing it that way. And sometimes when you are used to doing something without fatigue as part of your life and then it becomes part of your life that can make you stymied and things don’t work out unless you learn to paradigm shift. I’ll use an example.

Here in the Midwestern United States, around age 12, boys learn to mow their lawns. And their father takes them outside on Saturday with a 21 inch walk behind mower, shows them how to put gas in it and start the mower and shows them how to mow the lawn. And from that moment forward, every Saturday, the rest of that man’s life, he’s going to mow his lawn starting at noon on Saturday. And he’s going to do the same way he was taught from his dad when he was 12. Well, sometimes a guy with motor fatigue

and heat sensitivity will be found crawling in his backyard trying to get back in his house by his wife. And this is real. I’ve had this happen many times because he can’t do it in the full sun. He got too tired. He got too weak and he fell and he couldn’t walk. Then his wife has to drag him back inside and cool off. So that is a major issue for Midwestern pride because your lawn’s not mowed. So what do you do? Well,

Instead of being miserable and lamenting that you can’t do it, you have two options. Number one, you could hire someone to mow your lawn. Or number two, you could paradigm shift and on Saturday morning before the sun comes up, mow your front lawn and then come inside, take a cold shower and start your day. Sunday before church, go out and mow your back lawn, come inside, take a cold shower, go to church. By the time you get home from church on Sunday, you have all your man points. You got every Midwestern man point that you want because your lawn looks gorgeous.

but you had to change how you did it. All right. You had to break it up. So, so I could give you a numerate examples, but my point is if you want to do something, don’t let MSA know. So when I used to live in France, going to a discotheque was like a month long event, like, Lord, like, you know, you would plan for weeks and you’d meet at a restaurant. Then you’d go to a bar and then you go to another bar and then it was time to go dancing. mean, holy, you know, it was like an all night event.

Dr. Aaron Boster (01:31:25.128)
And if I, Aaron, at age 50 tried to do that, I would have to paradigm shift because I couldn’t stay up that late. I would have to take a day off work. I’d have to sleep like in the middle of the afternoon and get like a big nap. Then I would have to go dancing and then I would have to come up with a plan for the next day because I wouldn’t be functional. But you can imagine if going to the discotheque was really, really important to me, gosh darn it, I would have to do those things so that I could experience that again.

And so I want you to paradigm shift and say, look, I really want to have sex, but I get too tired. So I’m going to buy a sex swing. Right. I’m exhausted if I go all day and then try to do my laundry. So I’m going to hold off my laundry until Saturday. Paradigm shift.

Gina Beach (01:32:19.534)
And a big thank you to you, Erin, for today’s session. Hopefully everybody enjoyed this webinar. And just as a reminder, you will get a recording via Zoom to watch parts back you may have missed. Thank you so much to my co-host Lindsay and to Jake in the background who’s been working to support the questions. We’re gonna come back in December with another webinar, this time with Brett Drummond from MS Translate. He’s gonna share insights about the…

upcoming Ektrems concert. That’s the European Committee for Treatment and Research in Multiple Sclerosis. Dr. Boster has been there in the past. Not sure if you’re going to be there this year. Yep, he will be there. So registration will be open soon on the Overcoming MS Events page. So keep an eye out. We’d love for you to join us. And also, just as an aside, there’s a patient day. It’s free. You can hear all of the top research in a really easy to digest way. It’s online or it’s in person if you want to go to Spain.

Let’s see. Excuse me. If you’re looking to connect with the overcoming MS community in a bigger way, in person or online, don’t forget to secure your ticket to the Living Well Live event. This exciting new one-day event on the 15th of November brings our whole community together for inspirational talks, the latest MS research updates and practical healthy. I am so sorry.

Practical healthy lifestyle tips for people living with MS. It is a day you won’t want to miss. And finally, please fill in the short pop-up survey when the webinar closes and let us know your feedback. It helps us shape future events and webinars going forward. Thank you all so much. Take care. Thank you, Erin. We’ll see you next time. Bye, everybody.