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Aaron Boster

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

Welcoming back Dr Aaron Boster, a widely published, board-certified neurologist, giving you the opportunity to ask him your questions about living well with MS.

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Webinar summary:

In this webinar, Overcoming MS community member Regina Beach talks to Dr Aaron Boster, a widely published, board-certified Neurologist, asking him the community’s questions about living well with MS.

Key highlights:

03:21 MS care without disease modifying therapy.

06:26 Managing persistent swelling in feet/low legs for MS patients.

11:44 MS treatment and laboratory analysis.

17:39 MS drug trials and their outcomes.

21:11 MS disease activity and MRI results.

26:04 MS and remyelination.

31:51 New MS treatments and their potential side effects.

34:04 MS treatment and disease progression.

40:43 Women’s health with MS, including menopause and conception.

49:38 MS, lesions and family connections.

1:04:17 Managing MS symptoms through lifestyle changes.

1:17:12 MS treatment options and gut health.

1:30:12 MS management and mental health.

Speaker bios:

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 as well as one of the Ambassadors for the Overcoming MS Circle in Wales. 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.

Read the episode transcript here.

This transcript was created with the help of a volunteer.

Regina Beach  00:01

Welcome. Good afternoon or good evening or maybe good morning, depending on where you are in the world. It is so nice to see everyone trickling in. Welcome to our webinar. This is going to be a great q&a session with Dr. boster. All right. Let’s see. Welcome, welcome. Hello, everyone. Welcome to the living well with MS webinar series season five. We are so pleased to bring you tonight’s session with Dr. Aaron Boster, who is an award winning neurologist from the Boster Center for MS in my own home state of Ohio. My name is Gina Beach. I am an OMSer, I live with relapsing remitting MS. And I’m joining you today from South Wales. In a moment, I will be welcoming Aaron to the virtual stage. But before I do, I just want to run through a little bit of housekeeping to help keep the webinar running as smoothly as possible. Greetings to all of you watching this on replay in the future if you aren’t joining us live. Please note that the session is being recorded and you’ll receive a link to access the recording within the next week or so. And as this is a Zoom webinar, you’ll notice there isn’t an audio or visual component for live participants. However, it is still an interactive session and you’ll be able to ask questions using the q&a tab on your screen. We’ll start with our pre submitted questions. But if you have not already been able to submit your question, that’s fine. Do that now. And remember that questions should be kept generic, so we can all benefit from the answer. Aaron is unfortunately not able to comment on individual circumstances or diagnoses. If you do experience any technical problems during the webinar, try exiting your browser and re entering using the link in your email. We recommend using a Chrome browser to access today’s webinar. We’ve tried to make this webinar session as accessible as possible. And today we’ll be using subtitles, which you’ll see at the bottom of your screen. You can turn these on and off by clicking the CC live transcript option. And as you exit the webinar today, there’ll be a short survey that pops up automatically. A lot of people might not even realize that it’s a survey and X out of it. But try not to do that. It is so very helpful to receive your feedback. So if you have a moment, please do fill that in. This webinar will run for approximately 90 minutes. Please remember that I’m not a medical expert. So you’ll have to forgive me if I struggle with any pronunciation. Trust that we are all doing our best. And now without further ado, I’d like to welcome Aaron to the virtual stage. Hello, Hello, Dr. Boster. How are you?

 

Dr. Aaron Boster  03:21

I am super excited to be here. I’m doing great. How are you?

 

Regina Beach  03:24

Yeah, I’m really good. We’re really excited to have you. Thanks so much for joining us again, we have some really great questions. And we’re really excited to have your knowledge and expertise with us today.

 

Dr. Aaron Boster  03:35

Let’s do it up.

 

Regina Beach  03:37

Let’s do it. All right, so our first question asks, What does the support of a patient look like to you if they’re not undertaking any disease modifying treatments, but they are opting to follow the other parts of the Overcoming MS program?

 

Dr. Aaron Boster  03:58

So that’s a great question. And I like the way that it’s phrased. My goal at the Boster Center for MS is to try to help families impacted by the disease live their best life despite having the condition. So I want to bring everything I know about to bear. I want to bring all the tools that I have to try to help that person to accomplish that goal. And it’s a multi pronged approach. So I want to bring to the table nutrition, nutritional information that will help them live a healthier life. I want to bring to the table information surrounding exercise to help them live a healthy life. I want to bring information about brain health to the table to help them live a healthy life. And I want to bring pharmacology to the table to help them live a healthy life. Now, just because I want to bring all of those things doesn’t mean they want to do them. That just means that’s what I’m proposing. And I have patient who agreed to take a disease modifying therapy, and they will not stop smoking. Now I don’t discharge that patient from my clinic and say you’re a very naughty boy, and you’re not allowed to be seen. On the contrary, I treat them and we continue to engage on my concerns about their smoking. And they keep telling me they smoke great doc. In a similar fashion, if someone that I’m taking care of would like to embrace other aspects of MS care, but is not inclined to take a disease modifying therapy, I’m not going to discharge them from my practice, I’m going to help them in the other areas, and I reserve the right to share my concerns, right, I’m allowed to say, golly, gee, there’s excellent evidence that disease modification can slow the disease, it can help X, Y, and Z. And I want to make sure you know, I think we would do better if you take a medicine, and then I will shut up and let you tell me how you feel. So I really think that it’s a collaboration. And it’s really a joining of minds where you bring your information about you, because you’re a you expert, to the table, and I bring all the stuff I read and have experienced as a clinician to the table, and then we see where we align. Would I like that person to start a disease modifying therapy? Well, yeah, I would, because I believe that would help make them have a better outcome. But that doesn’t make them bad or naughty or wrong, if they see it differently.

 

Regina Beach  06:32

Yeah, and that’s why we say that one of our pillars is taking a disease modifying therapy in line with the recommendation of your neurologist that also, you know, feels right to you. Because right, different people have different tolerance for the risks, for the different side effects. And obviously, people can always change their mind along their journey as well.

 

Dr. Aaron Boster  06:54

I’m very fond of the phrase, I want you to take the most effective disease modifying therapy that you’re comfortable taking. And both parts of that sentence are important. Excuse me, I’m so sorry. I promise you, I’m not allergic. But both parts are really, really important because I want you on the most effective drug. Well, I’m gonna sneeze again, that you’re comfortable taking. I’m so sorry. Excuse me, in that that might not be a drug at all. Right. So So I really think that’s where a discussion must be had.

 

Regina Beach  07:32

Yeah, great. Um, what are your general recommendations for managing persistent swelling in the feet or the low legs? This person has Primary Progressive MS. They can walk a few meters. Like, do you recommend lymphatic drainage massage? What types of things can people be doing if they’re not able to really get up and exercise maybe the way they would like to.

 

Dr. Aaron Boster  08:00

Unfortunately, this is a very common presentation, it’s very common in clinic that someone will show me a swollen foot or two swollen feet, which is uncomfortable, sometimes it makes it hard to put on socks and shoes, sometimes it can actually cause skin breakdown. At minimum, it’s uncomfortable and unpleasant. The very first thing that we must do is figure out why. So we want to make sure that it’s not because of congestive heart failure. Right? So if there are concerns on the table, we might need to invoke the assistance of a primary care physician to rule out some scary words about the heart or what have you. Now, common things being common. This can be caused indirectly because of MS. And let me explain. When you are walking you flex your calf, so I’m pretending my arm is my leg, right, so you flex your calf as you walk, the calf squeezes the blood back up. So your heart pumps it down and gravity helps. And then as you pump your calves as you walk around your neighborhood, you push the blood back up to the heart, that’s the venous return. So sometimes we call the the calf the venous heart. When MS makes it so that you can’t move very well. Not only do you not walk as much, but you don’t wiggle your legs as much. Some patients may find they don’t really move their leg unless they pick it up and move it and that leg is just sitting stationary, gravity in your heart, keep pushing the blood down, but you don’t have that calf pumping, pushing the blood back up and so it will pool. So what do you do about that? Well, if you lived upside down, or if you like tied a rope around your feet and hung yourself upside down, then you would never have swollen feet ever because all the blood would drain away from your feet now, your hands would swell and it’s not cool to be upside down. So in absence of doing that there are some less draconian maneuvers. Step one, is to put a red brick under the the foot of your bed, like just two inches. So you’re just bringing the foot of your bed up, a smidge, a smidge. Now, the bed is typically 12 feet long. And so you don’t notice that you’re in reverse Trendelenburg. But when you lay in bed, your feet will be above the level of your heart, which means the whole time you’re sleeping, you’re going to drain your legs, then when you wake up, I want you to wear compression stockings. Now in the United States, you can pick these up at supermarkets or at drugstores. And there’s sometimes called job stockings or Ted hoes. But they’re basically like white nylons that are really, really tight in the toes, and they get looser as you go up. And what they will do is they’ll help keep the blood from flowing back down. Once you wake up and put your feet down and your head up. Another thing that you can do is, during the course of your day, if you have a moment of repose, let’s say you’re going to take a load off and lay it out on the couch. do so with your feet above the level of your heart, even for half an hour, and it will drain the fluid. Things like massage can help. So if you have a village member that you can trick into massaging your feet that can help a whole bunch. And then of course, any movement that you can do will of course help a whole bunch. So that’s a great question.

 

Regina Beach  11:26

Thank you. And that’s a really comprehensive answer. I know I teach yoga and we recommend like legs up the wall or putting your legs on like a foot rest or a chair or something and just staying there for 5 to 10 minutes even can like relieve some of that as well. Great. So this person has a question in regards to blood work? Is there anything to worry about for otherwise healthy people following the Overcoming MS program? If they have hyper potassiumia, too high of folic acid or too low a number of monocytes? So maybe first explaining what those are for some people who might not be familiar, and then what would you recommend?

 

Dr. Aaron Boster  12:09

Sure, so when you are on a medicine. And I know that’s not the question, but humor me, when you’re on a medicine, that medicine is metabolized by parts of your body. And sometimes it can force that part of your body to work a little harder. So if a medicine is metabolized by, let’s say your liver, then the doctor may periodically check liver enzymes to make sure that the medicine isn’t damaging your liver. And it’s not uncommon because of a potpourri of different medicines in a neurology clinic, that a best practice is to get some screening laboratories a few times a year, just to look at the health of the kidneys and the liver. And oftentimes, because we’re doing things to the immune system, we may also check white blood cells and the like. So we’re checking some laboratories. Now when you’re engaged in trying to optimize your your best life through nutrition, sometimes we will also look at other laboratories looking at potassium levels, as mentioned or looking to other electrolytes, etc, etc. I’m not able to answer the question, specifically as asked because I don’t have any context to put it in. But when we look at those laboratories, we really have to think about the nutritional status of the human being any medicines or supplements, minerals, vitamins, herbal remedies they may be taking, which could influence their electrolytes and their white blood cells, etc. And then we really use that as a biomarker to know whether or not we’re doing okay, or if we need to implement change. One thing I will say is that the laboratories are not written for patients to interpret, let me explain what I mean. The laboratory is written by a pathologist for the clinician to look at all right, and it’ll give you the number and then it’ll give you the range, it’ll say, above or below. And sometimes they’ll even go as far as to put the abnormals in red. Right. And so there is a potential risk or problem when you give that information to the patients and the family without a doctor explaining it. Because at first blush, you think, oh, that’s wonderfully transparent, good job clinician for sharing all the information. Here’s the problem. They forgot that you have to go to medical school for nearly a decade and a half to learn to interpret all of those silly numbers and letters. And when you give the patient the information, and there’s a lab that’s outside of range, it’s scary, because they don’t know what that means. I’ll be honest with you, oftentimes, the lab is abnormal, but it’s barely abnormal, and it doesn’t have any clinical meaning whatsoever. So as a seasoned clinician, the doctor may look at that and say, pasha, no big deal, whereas the patient was left nervous and anxious. So it’s my strong opinion that I don’t want you reviewing those labs and getting on Dr. Google and trying to figure out what it is because oftentimes all that does is scare you. On the contrary, bringing the labs to the nurse, to the clinician to the doctor to say, hey, what does this mean in context of ME, you’ll be very reassured by what you learn.

 

Regina Beach  15:22

Yeah, because we are all different. And so often those normal ranges are the average. And that’s not necessarily what we should even be striving for, let alone what’s good for us as an individual.

 

Dr. Aaron Boster  15:33

That’s exactly right. That’s exactly right.

 

Regina Beach  15:37

So moving on to some pharmaceuticals. So, Evobrutinib failed in its trial. But this person would like some clarity on will other BTK inhibitors, such as Tolebrutinib, in the Hercules trial for progressive MS. Do you think that they will they they show promise, like what’s the status of this.

 

Dr. Aaron Boster  16:04

So just to set the stage for folks that are listening, we are actively involved internationally in developing better MS medicines. There’s a huge international effort of like minded clinicians and scientists and manufacturers that are all trying to develop better drugs to help people with MS live a better life. And there’s a class of drugs, which is aggressively being studied right now by no less than five manufacturers with five different products. And they’re all the same class of medication called Bruton Tyrosine Kinase inhibitors, or BTK inhibitors for short. And these medicines have largely been tested in phase two clinical trials, and found to be very, very impressive. So when we study these drugs in phase two clinical trials, the results were like really, like knock your socks off impressive, like, wow, we should study this a lot more. So all of these drugs, except one are now entered into Phase Three in the phase three trial is what the EMA and the FDA use to determine if they accept a drug, you know, for their respective countries. And it’s it’s really the real deal holyfield trying to decide does this drug work in the MS population to slow disability to decrease relapses to improve the MRI. Now, there’s five clinical trials going on right now. And one of the clinical trials completed. So it was the first one to be done. And it was the first one to get a readout. And that trial was made by a manufacturer named Merck. And the drug was Evobrutinib, and it was pitted against a drug called Aubagio, which is an MS medicine. And it we have the top line data, the paper has not been published yet. So we don’t have all the details. But we have the top line data and much to our chagrin, it didn’t work. But I want to explain for a second when I say that what exactly that means because it didn’t work. Not because the drug didn’t perform well. Actually Evobrutinib was amazing. It demonstrated a really, really low relapse rate, like it looked like a very, very good drug. Here’s the weird thing. The comparator, Aubagio also did amazing. In fact, Aubagio in this trial did three times better than it’s ever done in the history of the universe. So because the comparator did so well. It didn’t show a difference between the two drugs. And as a result, it was a negative trial. Does that mean Evobrutinib doesn’t work? Well, not in my opinion, it just means that the Aubagio like outperformed expectations. Now, the question was, What does that mean for the rest of the molecules? And the answer is we have no idea. The molecules are different. So for example, you mentioned Tolebrutinib up there’s phenol Bruton up, there’s Remi Bruton it there’s all these other BTK molecules, and they’re not the same. Some of them enter the brain better. Some of them don’t do it as much. Some of them bind irreversibly. So they can’t unbind,  some are reversible. In other words, the differences in the drugs are why the trials are so darn important. So Aaron’s opinion is that it’s too early for us to weigh in. We don’t know yet. We will probably learn the definitive answers over the next three years as the trials complete. And as we get the readouts, and my best advice is you got to hold on because there’s too many variables for us to know just yet.

 

Regina Beach  19:51

That’s really hard, to be patient when you’re someone who is waiting for the latest breakthrough, do you know if any of these trials are still recruiting, if anyone would be interested like, what? How do people get involved in this kind of work?

 

Dr. Aaron Boster  20:05

Yep. So. So at the Boster Center for MS, we’re running every MS BTK trial that’s currently available, I believe. So as I mentioned, Evobrutinib is locked. It’s done. It’s actually finished it’s trial. And so there may be patients that participated that are now in the extension, but no new patients will join. Fenebrutinib is a trial and it is locked to enrollment. They’re not putting anyone else on it. The Tolebrutinib trial which was actually part of the question, they’re doing three trials, one relapsing MS, no more patients are being enrolled. And then secondary progressive MS is still enrolling. Primary Progressive MS is still enrolling. So that’s the Hercules in the Perseus trial, those are still enrolling. And so we’re still putting patients in there. And then there’s a drug called Remebrutinib which is being studied by a manufacturer named Biogen. And it’s still enrolling, that’s a phase two trial. So there are still opportunities for patients to participate in these trials. They’re not locked to enrollment completely.

 

Regina Beach  21:10

That’s great to know. Thanks. So this person had their first MRI in 12 years, and it did show signs of disease activity. However, the patient feels really well. What’s the discrepancy between lack of clinical symptoms and these MRI results? And what does it mean?

 

Dr. Aaron Boster  21:33

That’s a very excellent question. So when we’re trying to help someone live their best life despite having MS. We use different metrics to sort out how they’re doing. And I would submit to you there’s really three that I think about, the most important is the litmus test of life. It’s your lived experience, because you’re a you expert. So you know all about you, like, you know, like how all the things go inside you, because you’re with you all the time. So capturing your life experience is the most important thing, in my opinion. And how do we do this? We ask you questions, we have you fill out surveys, right? Have you had an attack? What’s your energy? Like? How’s sex going? Are you sleeping? I mean, we’re trying to figure out like, right, so that’s the first thing. The second thing is what I call the MS Olympics, when you go to see the clinician, and they have you do all the stuff. That stuff is not teasing or making fun. That stuff is a diagnostic test to assess how your nervous system works, right. So we’re, for example, both of us just looked at like cerebellar function, where you’re trying to take your finger and you’re trying to guide it to a point and then guide it to another point. Well, there’s a part of your brain that controls that. And if you have damage to that part, you won’t do that very well. So so we can use that neurological examination as a second tool to figure out how you’re doing compared to last time. The third tool is structural imaging. So the MRI machine takes a picture of the structure of your brain. And you can look for new structural damage, which in English means new brain damage. So when we’re trying to assess that someone’s doing okay, I want all three to be awesome; litmus test to life, you’re killing it, no attacks, no loss of function. Your MS Olympics looks just as gorgeous as the last time I tortured you. And there’s no new brain damage on your imaging. Okay? They don’t have to align. Here’s the thing. If one of them is not okay, we’re not doing okay. So you can have an MRI that is clean as a whistle not looks just like last time, congratulations. And your exam can look gorgeous. Just the same way it did last time I examined you and you can be doing horrible. Alright, so just because in this example, the scans are okay and the exam is okay, okay? We’re not doing okay. Because you’re not doing well in the litmus test of life. Maybe you’re not able to keep up at work. Or maybe you’re falling, God forbid, or maybe you can’t feel your left leg. Similarly, if you feel right as rain, things are really good in your life, and your exam is unchanged. Congratulations. And we see that you have new brain damage. Well gosh darnit that’s not okay. And it’s really looking under the hood. I’m using a car expression, the person who asked questions not a car, I’m not saying they are. But I’m using it as an example of looking under the hood. To look for something before it becomes clinically relevant. Let me give a quick example. So here in the US, it’s a best recommendation that you take your car to the dealership once a year for a once over, alright, not because your car made a funny noise, but like it’s time for a checkup. So I take my car to the dealership and sometimes I’ll get a call from the mechanic and they’ll say hey, listen your brake pads are really thin, we’re going to replace them. To which I might say, well, I didn’t notice any problems to which they’ll say, duh, I don’t want you to notice any problems, I’m going to replace your brake pads before they become a problem on the freeway. When we get an MRI, and we see new disease activity, new structural brain damage, that is teaching us that we’re not doing okay, even though we don’t realize it yet. And it gives us a window of opportunity to make a potential change to prevent the human body from catching up to the MRI. So last comment, sometimes a patient will say to me, I don’t need an MRI this year, because I’m doing great. That’s backwards. That’s exactly backwards. When you’re doing poorly, and you have an attack or lose function. I don’t need an MRI, I have you teaching me that we’re not winning. It’s when you are killing it doing your best job at living life. I want to check under the hood to make sure that everything aligns, that’s when I need an MRI.

 

Regina Beach  26:04

Yeah, this is really interesting. So my last MRI was just the head and not the spine, even though I know I have spine lesions. And I was asking, why is this and they’re like, oh, if you had newer enhancing spine lesions, you would be calling us. But we can’t always tell that if something that there’s less likely to have physical manifestation if you have new brain lesions. And that was the explanation to me. So I’m wondering if that’s somehow related to what you’re saying?

 

Dr. Aaron Boster  26:31

It is. Okay. So let’s pretend that money grew on trees. And that Great Britain had an MRI machine at every corner, like just hypothetical. Okay, we would get a full brain C and T spine every year, in every person, like if money grew on trees, like you know if there was no concerns for resources, or time or what have you, because that would be a complete capture. But that’s not true. There isn’t a MRI machine at every street corner. And they’re very, very expensive, and they’re very timely, and they’re very uncomfortable. And so we have to be a bit judicious when you’re going for that look under the hood. What they told you is largely largely true that you’re more likely to find a new lesion on the brain without a symptom. Because the brain is so vast and it can rewire that that’s actually not uncommon. However, lesions in the spinal cord generally don’t go unnoticed. Generally speaking, if you have a new spinal cord lesion, it comes with a new spinal cord symptom. Here’s my experience having done this now close to 20 years. That’s true most of the time. So I get a brain basically every year. I get a spine every other year because that way insurance will allow me to do it. And the reason I get a spine about every other year, a C spine, is because I can be surprised and somebody may end up in fact having a lesion that they didn’t know about, it’s less likely but it can happen.

 

Regina Beach  28:05

So still get your annual MRI when you’re offered it,get it, even if you feel well, thats the bottom line is what I’m hearing. What’s the latest on re myelination, any studies that look promising, anything that’s coming down the pike?

 

Dr. Aaron Boster  28:19

Humbly, I have no new information to share from the last time we spoke. I do want to remind everyone that there are many ongoing investigations. It’s not as if we’ve stopped looking, we just keep not being successful. So I think there’s some like sports guy who has a famous quote saying, “if we keep banging on the door one day, we’ll knock it down”. And that’s the way I feel about re-myelination. We’re just gonna keep plugging away and one day we’re gonna hit it.

 

Regina Beach  28:49

Do you have any opinions on lion’s mane or reishi mushrooms that’s really popular right now, is there any evidence that that does help with re-myelination?

 

Dr. Aaron Boster  29:00

So I love that question. So yes, I have an opinion and then no,  there’s no evidence. Okay, so let’s talk about it. So. So I think that functional mushrooms are really cool. Like, like I find them to be academically and intellectually fascinating. And functional mushrooms are defined as mushrooms that seem to have some benefits to human health. Now, there’s gazillions of mushrooms but there’s just a handful like, like less than 10 that that are considered to be functional mushrooms. And amongst them is Lion’s Mane which looks gorgeous. It looks like a lion’s mane. It’s very pretty. It’s a pretty white fruiting body. And I’m told that, I’ve never tasted it, but I’m told that it tastes like crab or like fish, just as an FYI. Now, it looks like when you take Lion’s Mane there are actually some very interesting chemical things that happen in the brain. And it looks like it might promote brain growth. And there are some mouse studies, we are not, but there are some mouse studies that suggest that that may in fact be the case. The data in humans is not really very good, right and in the data in MS is really kind of non existent. I have many patients in my practice that want to take lions mane in hopes that it might help them with their attention, their memory, their cognition and their energy. And I think that’s awesome. I have three rules. And I’d say that tongue in cheek, I don’t really mean rules, but like three guidelines when we’re talking about a non allopathic medicine, like a pill. Okay, number one, it can’t be dangerous. Now, lion’s mane is not dangerous at all. Number two, it can’t be expensive. And I can’t comment on that every family has to determine if like buying lion’s mane is expensive for their household or not. Generally speaking, I don’t think lion’s mane is very expensive to purchase, at least here in the United States. Number three, I would prefer if it was not, instead of something that I know works. So if you said I’m going to stop all of my medicines, and only take Lion’s Mane, I would be nervous about that. But if you said I’m going to keep on keeping on with all the things that we’ve been doing, and I want to add Lion’s Mane, I would say, Oh, great, take really good notes. And let’s find out if you notice any benefit.

 

Regina Beach  31:20

Yeah, I take it daily, and I feel like it doesn’t hurt. So I’m going to keep doing it.

 

Dr. Aaron Boster  31:26

Fascinating, now, it’s important that we keep in mind, that’s not proof that it works. But it might and it’s definitely not going to hurt us. And so I think that’s a great thing to do. I have colleagues that have discovered this mushroom tea that they rave about. And many of them feel very, very confident that it helps them with their concentration. So that’s really cool.

 

Regina Beach  31:53

Great, on the research front, is there anything else you want to add for new dmts? Or coming up with,what what else is going on in the research world?

 

Dr. Aaron Boster  32:02

One thing, which I’m very excited about is yet another class of medicines, which are coming after the BTK inhibitors. So this is kind of looking deep, right. And if we go back a little bit B cell medicines, medicines that deplete B cells are very effective to treat MS. So we figured this out. So there are a bunch of medicines, which are currently available to treat MS that work by depleting B cells, but they can increase risk of infection. That’s one of the reasons that the BTK inhibitors are so attractive, because they shouldn’t increase the risk of infection. There are medicines coming after the BTK inhibitors that are called anti-CD 40 ligands. Now I didnt make up that term, anti-CD 40 ligands, it does not roll off the tongue. These medicines also block B cell signaling without murder. So they block the ability of the B cell to piss off the T cell to attack you. But again, they do it without murder. And there’s one drug which I call Frexa (Frexalimab), which we’ve actually started at the Boster Center to study. And so we’re now enrolling patients into one of two trials. There’s a relapsing trial, where they get an infusion once a month, which is either real Frexa or dummy drug. And they take a pill once a day, which is either real Aubagio or a dummy drug. So everybody’s on a real drug, we just don’t know which one’s real. And that’s a study that has just launched and we’re enrolling for it. And we’re very hopeful and excited about that. Also, we’re doing a very similar study in secondary progressive multiple sclerosis, using Frexa. So so this is very early times, but it’s scientifically very, very exciting. So more to come.

 

Dr. Aaron Boster  32:08

Cool. In that vein, are there any cancer susceptibilities to certain dmts due to changes in the immune system that people should like way up when they’re deciding which drug to take?

 

Dr. Aaron Boster  34:04

Yes. So if a doctor tells you that a drug doesn’t have a side effect, leave, like go go find a different clinician, because they’re not telling you the truth. Because I’m not aware of a single drug that doesn’t have some side effect. Even the water that I’m drinking in excessive amounts can cause like problems. So, so we we can’t talk about the benefit of a drug unless we also talk about the side effects and risk of that drug. Because it’s a package you don’t get to only do half. And when we think about manipulating the immune system, with these medicines, we think about a couple things. We think about the medicines impact on the liver and kidneys because it’s processed by the liver and kidneys oftentimes. We think about suppressing the immune system because some of the medicines work by suppressing the immune system and the side effects which include an increased risk of infection in some cases, and in some cases an increased risk of cancer. Now, that’s not to say that every single drug has an increased risk of cancer or infection, but these are the conversations that we must have. So when you talk to a clinician and they say, oh, try this drug, so okay, what are the side effects, and then you’re going to talk through those side effects. Talking about cancer. For example, I’ll use an example of a drug called Cladribine. So cladribine is an oral medicine for MS. It’s one that I think is very good. And it’s a pill taken in an unusual manner, you do a pill a day for five days, wait a month, a pill a day for five days, wait a year, and then you repeat once. So 10 pills the first year, 10 pills the second. And this medicine looks like it increases the risk of cancer by about, I would estimate about one to one and a half percent compared to the general population. The FDA here in the United States recommends age appropriate cancer screening, which means I Aaron have become better at knowing age appropriate cancer screening, like when you’re of the age of the mammogram, you get the mammogram. And when you’re of the age of the colonoscopy, you get the colonoscopy, you know, and so I can do a better job of shepherding my patients through, Hey, make sure that you talk to your primary care doctor, it’s time for the Pap smear by by making sure that we do age appropriate cancer screening, we should be able to safely monitor someone taking the Mavenclad drug. My point here is I don’t want to throw the baby out with the bathwater. Right. And I think that we have to think about the risk benefit of a drug inside the context of the risk of the disease. And oftentimes, bluntly, I’m much more scared about undertreated or untreated MS than I am about the side effects for something that I can monitor and hopefully control.

 

Regina Beach  36:48

Yeah, and that’s really good to know, because sometimes reading those brochures is really scary, because it’s a laundry list of really, really horrible side effects that most people never experience.

 

Dr. Aaron Boster  36:58

That’s exactly right. And, you know, you would think like if you took these medicines that your penis would fall off, and your eyes would explode, and your hair would burn on fire, and, you know, a bunch of terrible things. Now, by the way, all three of those are false. I just made all that up. But the reality is that you need to think about, with your doctor, what the risks are, and how do we mitigate them? And are you okay with that?

 

Regina Beach  37:21

Yeah. Do you treat secondary progressive MS with Mavenclad? What’s your opinion on that?

 

Dr. Aaron Boster  37:27

All day, every day. Yeah. So I think one of the biggest detriments to the field of multiple sclerosis are labels like the one that you just brought up. Now, that is not me being critical of you saying the word secondary progressive MS. But the fact that we coined this term, I think is is actually a huge detriment to the field. Let me tell you a not secret. There’s two kinds of MS as best I can tell. There’s progressive forms of MS like Primary Progressive MS, where people have a slow progressive decline from the get go. And then there are relapsing forms of MS. Now, within the concept of relapsing MS, we have clinically isolated syndrome and relapsing MS and secondary progressive MS. And, and quite honestly, those are inappropriate, incomplete, outward descriptions of a disease. SPMs reminds me of saying, dude, look at that buxom blonde, right, now I want to in case you’re listening this that’s not the way that I speak. And I think that’s very inappropriate. But I use this as an example, because when you call a human, a quote buxom blonde, you’re commenting on two outward features, which don’t tell you anything about the human, right, so you know, their hair color, and one other outward feature, but you don’t know like, if they like Thai food, or you don’t know, like, what their politics are like, or if they’re good at skateboarding, you don’t know any of these things, right? Similarly, when you say someone has SPMs, you are commenting on an outward description, which doesn’t give you any actual information about their disease process, which bothers the hell out of me. The reality is when someone has a relapsing form of MS, they are at risk of relapses period. Now, the human when they were younger, in chronologic, age is at a higher risk of relapses. And the same human when they’re slightly older chronologically are less likely to have relapses, but they can still have them. Someone with so called secondary progressive MS can have attacks, it’s less likely and they’re way less likely to bounce back. Now, that same relapsing person early in their disease can have progression of disability early when they’re young, they’re just less likely to have progression as compared to when they’re older. So I think sometimes we have a dumb understanding. When I say we, I mean doctors that there’s like phases like there’s like the relapsing phase and then we draw a line in the sand and then there’s the secondary progressive phase and that’s simply not accurate.

 

Regina Beach  40:02

Yeah this is a continuum, isn’t it? And it’s for everyone. It’s not and it’s not like you can and that’s why you can’t just say oh, now suddenly at this exact moment in time I’ve switched from relapsing to progressive forms of of MS.

 

Dr. Aaron Boster  40:14

Correct. And maybe even more important is the fact that these medicines, I’ll use Cladribine, as example, do more than just stop relapses a lot more. They slow progression. So if you have a phenotype of relapsing MS, where you’re having more progression and less attacks, you still benefit from a DMT. I’ll climb off my soapbox now.

 

Regina Beach  40:37

Is Shingrix against shingles safe for people with MS?

 

Dr. Aaron Boster  40:41

Yes.

 

Regina Beach  40:42

I did. Yeah. Okay. Absolutely. Um, well, let’s do a few on women’s health with Ocrevus. Can you talk through the family planning and the timeline? Besides the labels recommended of the six months of an infusion? Is there anything more specific you can dive into?

 

Dr. Aaron Boster  40:58

Yeah. I can talk about a really cool French study. They did a bang up job studying ocrevus and pregnancy. So take one small step back back in the ancient days of yesteryear, just a couple of years back. The the most avant garde style of helping a woman to become pregnant was to tell them stop all drugs. God forbid you take anything, you’ll explode. And we would take someone off drugs and it was horrible. And we would watch people have disease activity, then I felt like a schmo like it was awful, then we realized that it was probably okayish to take the injections. So we would keep women who wanted to conceive on glatiramer acetate could infer Copaxone or the interferon beta products. And then we realized that natalizumab Tysabri is actually safe to conceive. And for the first two trimesters, so before this French study came out, like circa 2016, forward, the bee’s knees was to get on Tysabri, become pregnant on Tysabri, carry the baby for the first two trimesters, stop the Tysabri, finish the third trimester and then deliver. And that was like the best that we had. And I used to do that all the time. So so there’s a French study that looked at that Tysabri against a new way of doing things with Ocrevus. Here’s what they did a woman’s on ocrevus. And she wants to conceive, so she gets her ocrevus. And then six months later, she doesn’t get another ocrevus. Instead, she starts having copious amounts of intercourse without contraception, and in attempts at becoming pregnant. And then she becomes pregnant. And then she gestates for nine months, no medicine, then she delivers. And then she in the trial, or in the observation, women were allowed to, of course, breastfeed. And on average, they breastfed for 120 days, so not like not a small amount of time. And then only after 120 days, they restarted ocrevus, none of the women in the French study had a single attack in the ocrevus, arm zero, none. It was amazing. It was really, really impressive. And that was way better actually than the folks who on the tysabri are. So so that has become my favorite style of conception, you’re going to be so to Peter, let’s make sure that it’s on board, then you stop six months later, instead of more ocrevus. It’s baby making time. And then we try to conceive and we stay off all therapy through the whole gestation and breastfeeding and then we jump back in.

 

Regina Beach  43:35

And then just to clarify, after the 120 days start ocrevus, stop breastfeeding, because that is a small molecule that can go transport and went through breast milk or we’re not quite sure. And we just don’t want to risk it.

 

Dr. Aaron Boster  43:47

No kind kind of okay, so so. So yes. So that’s the party line. So after 120 days, you stop breastfeeding, and then you start the ocrevus. Okay. Let me tell you a different story that and this is completely anecdotal, and nobody listening to this. Dr. Boster is not telling you this is a good idea. I’m just sharing something that worked for a patient of mine, a gal that’s very dear to me. And she had been away from my practice and rejoined my practice after a bit and had delivered a beautiful baby boy who was absolutely gorgeous, by the way. And the baby was, I think, like 16 or 18 months, and she wanted to start back on her ocrevus. But she also wanted to continue to breastfeed she wasn’t done yet. So I had a conversation with a bunch of smart people, including some medical science folks, and then also her pediatrician. And what we all decided was, if she breastfed there would be some ocrevus in the breast milk that went into the baby’s stomach. And as soon as it hit the baby’s stomach, the stomach acid is really, really high. it’ll dissolve the antibodies. And so it should theoretically be safe. So we did it. And we tested the kids B cells and he was fine. And so we were in fact able to do that. Now that is not primetime. That’s way off label, and I’m not recommending you do that. But it was a very successful and beautiful opportunity for one family that I worked with to be able to be treated and to continue to breastfeed.

 

Regina Beach  45:11

And that’s great. And maybe in the future, there’ll be more more evidence to show that that’s that might become a recommendation.

 

Dr. Aaron Boster  45:18

Yes, that would be awesome.

 

Regina Beach  45:25

All right. Another women’s health question about menopause and perimenopause is very, very important topic. How are our women with MS to be affected by falling estrogen levels? Do you recommend that your patients take HRT, do you have any other suggestions for people entering of perimenopause stage of life?

 

Dr. Aaron Boster  45:47

This is A A plus question. So I would put like a star by and circle it and like maybe highlight it. And there’s this is an area where I think a lot of practitioners are missing the boat by not paying attention. I also want to give a shout out to a friend of mine, a doctor named Dr Riley Bove,  who is a brilliant woman at UCSF in California, who has done some of the most provocative work on this area. So a lot of the data that I’ll be sharing comes from Dr. Bove. So there are three hormones that tend to start to slow down, or in this really actually starts like late 20s, early 30s, and then into your 40s. And these include estrogen and progesterone and an anti malarial hormone. And oftentimes, a woman will go into a Peri menopausal state in the 40s 45 ish, where as the hormone levels drop, the the menstrual cycles may become irregular. And then oftentimes around 55 ish, there may be a period of time pun not intended, where there’s no menstrual cycle for up to a year, and that would be defined as being in menopause. Well, the, the hormonal system has a massive impact on MS. And when you look at men and women who are newly diagnosed, men get worse faster. And men progress faster than women until menopause. After menopause, the rate of progression in women starts to mirror that of men. In other words, it gets a little faster. Moreover, there are a bunch of symptoms of menopause, which sound like MS. So for example, a woman going through menopause, no MS can have cog fog, depression, anxiety, insomnia, fatigue, bowel dysfunction, bladder dysfunction, sexual dysfunction, on top of the hot flashes. And so you can sometimes see and I see this frequently, a woman in their 50s ish has an uptick of symptoms of MS. And I think this is an awesome opportunity for collaboration with the obstetrician gynecologist. The data would suggest that if we supplement estrogen, we can help some of those symptoms. Now, that’s not done without risk. Remember how earlier we talked about risk benefit. So estrogen is not without risk. When you give estrogen and progesterone together as hormone replacement therapy, you increase the risk of cancer. And so I asked oftentimes during these conversations to avoid the progesterone, let’s just do estrogen, which for the immune system is all I really need. Secondly, sometimes when you take oral hormone, oral hormones, it can increase the risk of blood clots, like deep vein blood clots. And so a topical, like, like a patch doesn’t do that. And so I will actually oftentimes ask the gynecologist to please consider hormone replacement therapy with estrogen only patch. If they are not able or willing to do that, and there’s a multitude of reasons why that’s not the best thing for a woman’s health. There are other things that we can do. For example, there are supplements, natural supplements like black cohosh, which can be purchased and taken. Or there are medicines like SSRI antidepressants, which can help with many I’m not talking about depression, but many of those Peri menopausal symptoms. So the bottom line is sometimes nature’s too generous, and you can have MS and then you can have worsening symptoms and progression because of menopause. And we shouldn’t take it laying down. And I think it’s important that (a )we educate about it. So thank you for asking that question. And (b) it’s actionable. So it mandates in my mind a conversation a three way conversation between human being their neurologist and their gynecologist.

 

Regina Beach  49:55

Yeah, because it takes a village and it’s not always an MS symptom and it’s important to kind of get everybody on the same page to know what’s going on and what led you said we don’t have to suffer? We can. We can take action. Like, think about this. Yeah, I have two semi related questions. One, when should you stop a DMT during long periods of disease inactivity? And can the lesions disappear? If the lesions do disappear? Will your symptoms subside both mealing return will you lose the pins and needles like how are they? How were those things related?

 

Dr. Aaron Boster  50:29

Two very important questions. Let’s take them each in turn separately, because I think that they’re separate key points here. So the first question is about when to stop a medicine. And there’s really two schools of thought here. There are neurologists who believe that after the age of 55 ish, particularly if you haven’t had any new relapses, that you can stop medicines, and they are wrong. I must find myself in the other camp where we believe because of strong data, that if you stop medicines, that about a third of those people have a faster progression of disability. So I’ve made my bias rather clear in my answer, I believe firmly that we should stop treating at death. So So I won’t treat someone in my practice after they die, like I refuse. And it doesn’t matter if there’s like a will or if their family is very, I just I don’t do that. All right. But up until the point of death, it’s my opinion, that the best course of action is to continue to help protect the nervous system from the aberrant immune system. If you were, let’s say, older than 55, let’s say you’re 60, which in my mind is like the new 30. But so you’re 60. And you have neurological functions that you like, like seeing, or having an orgasm, or tasting food, or I don’t know, moving your finger around, right? If you like those, then I want to do something to help protect them. Right? Because you’re not dead yet at 60. In fact, you’re nowhere near being dead. And when you stop the MS medicines in populations of people that are 55 and 60. And then you watch what happens 1/3 Go on to progress, and we don’t know who they are. So I want to keep on keepin on.

 

Regina Beach  52:19

And lesions, can they disappear, will you get the feeling back?

 

Dr. Aaron Boster  52:22

So so a lesion is a doctor word for a white spot on the MRI. So we could call it like Barney, like we could like it just like it just a thing, right? It’s a spot that we see we we call that a lesion. And when you look at that space under like a microscope, it’s an area of damage where the immune system caused inflammation, and it left a puddle of water, like a microscopic puddle of water. The lesion doesn’t tell you whether there’s new damage that’s occurring or whether it’s trying to recover and repair. It doesn’t tell you whether it’s demyelinating or whether it’s re myelinating, it just shows you the location. So depending on the underlying pathology of that actual lesion, sometimes they can get a little smaller with time, sometimes they can continue to grow, and sometimes they just stay there. Now, there are plenty of exceptions to the rule. But what I would like to convey is, most often the lesion is essentially a scar and it doesn’t go away. And if it gets smaller, that doesn’t always mean good things. There’s actually this weird data that if you look at lesions, as someone ages, sometimes as they get smaller, that’s because the brain is shrinking too fast. So so it’s actually like a very complex situation. And we need to become more savvy about the specific pathology of the given lesion before we can say anything more intelligent.

 

Regina Beach  53:52

This is a really interesting question. Is there a connection between family members, one has Primary Progressive MS. One has Alzheimer’s, obviously both are inflammation of the brain related both heavily related to lifestyle. What do you know about this?

 

Dr. Aaron Boster  54:06

The short answer is no. So so we have not found any auto immunity as an underpinnings for causing Alzheimer’s dementia. The pathology as we understand Alzheimer’s dementia has to do with a collection of a bad protein that builds up and builds up and literally like gunks up the brain. And although Alzheimer’s is a brain disease, and MS is a brain disease, they don’t appear to overlap. This is very relevant because as humans with MS age, sometimes they can develop difficulties with thinking and memory. And because there’s such a lime light shining on Alzheimer’s, sometimes that’s the only form of memory problems that the general population is aware of. And so it’s not uncommon someone to say oh my gosh, Aaron, I’m worried I might have Alzheimer’s. They don’t have Alzheimer’s, they have MS. And there’s some MS cog fog that we can treat. It’s not the same condition

 

Regina Beach  55:07

And not related. So with it, you’re not at risk for one because you have the other or anything like that. Yeah. Um, what about early onset? MS in children? Is there an increase in diagnosis? Because we have better tools? Or is there something that’s happening that more kids are getting? MS. Is there any good news on pediatric MS?

 

Dr. Aaron Boster  55:31

Absolutely. So so that’s a series of really important questions, let’s try to go through them. Pediatric onset, MS is not new. Right. So I mean, we’ve been studying children with MS for a very, very long time. And I’m not aware that there’s a statistical uptick in like there’s not a pandemic of children developing MS. that I’m aware of, I do think that there’s a massive increase in general awareness about Multiple Sclerosis. And I think this results in coming to the attention of clinicians faster. Now, that’s conjecture. That is not a study that I’m citing, that’s just a clinician in Ohio, commenting on what I’m observing. It’s a godsend that we can diagnose people faster. You know, if you in the United States sneeze a lot, and go to an emergency department, there’s a chance they’ll get an MRI as part of their your diagnostic workup. And we have a very low threshold to do imaging. And so I think we’re finding things sooner in some cases. Interestingly, prognostically, having a pediatric onset is a better prognosis than having a later age of onset, which most people don’t know now, because the child is developing symptoms at a younger chronologic age, they may accrue disability at a younger chronologic age, but they went a much longer timeframe before they manifested that. Now, as as far as good news. There’s a lot right now, at the Boston Center. We’re participating in a really exciting clinical trial called the operetta trial, which is studying not one but two drugs to treat kids to see which one’s better. Every child in the trial is receiving a pill once a day, and an infusion every six months. The infusion is either Ocrevus or dummy drug. And the pill is either Gilenya or dummy drug, one of them’s real, one of them’s fake, and the children don’t know which one, the parents don’t know which one, I don’t know which one. And it’s a very, very exciting trial to see if we can prove efficacy of these high efficacy exciting medicines, amongst munchkins.

 

Regina Beach  57:41

That’s really good is great information that’s really lovely. I’m going to pivot a little bit to vitamin D, which is one of the pillars of the Overcoming MS. Program. And this person is wondering why there is such a debate and lack of agreement among what dosage to take. They’re citing studies that say dosage of 10,000 IU is safe and effective. Some neurologists seem to be working on outdated sources of information and are recommending a much lower dose, what can you tell us about vitamin D.

 

Dr. Aaron Boster  58:12

So So several things, first of all, Overcoming MS and Aaron Boster are aligned that supplementing vitamin D is a really, really good idea. I think that the totality of the data suggests a very strong association, that when you look at a population of people with MS with a higher level of vitamin D, which I’ll define as above 50, that is associated with much better outcomes. So like less new lesions, less brain volume loss, less disability progression, less attacks, like stuff that we want. So that’s pretty awesome. And just real quickly, there’s three ways that you can obtain vitamin D. If you go out naked into full sun for 15 minutes, you will absorb more than 5000 international units of d3. Now, in Ohio, you would get frostbite on your personal private parts. And in my neighborhood, the police would be called, but it would work. Alright, so so there’s some caveats there. If it’s not if going outside naked is not going to cut it where you live. Another way to do it is with food. And so egg yolks and fatty fish like say salmon or tuna, those are very high in vitamin D. But oftentimes here in Ohio, we need to shoot for at least 5000 international units a day and that would be the equivalent of an entire salmon, like the whole freakin fish. So very frequently, at least here in Ohio, we recommend people take supplementation. So there’s D two and D three, and I recommend d3. Because d3 is better absorbed in the human body. It’s the bioavailable form. It’s the form that your body makes when you see sun. And so I think it’s a better option and the amount is. Is that actually the question? How much Aaron, get to the point? So the reason there isn’t an answer is because there’s no money in it. So no manufacturer is going to make a mint by proving exactly how much to take. And so I don’t think we’re going to find a legitimate big study that’s going to answer the question. But I don’t think it’s a mystery. Because I treat to a target, I can draw a lab called the vitamin D 25. Oh H level, and it’ll tell me your vitamin D level, I want that number above 50, but below 100. So how much however much gets me that number. So if that’s 5000 a day, or 10,000 a day, or 50,000 a week or 100,000 a week, whatever it is, we’re going to give you that amount to get in that range. So at the Boster Center we check labs, about twice a year, always in the wintertime when the sun is not present. And then we supplement accordingly.

 

Regina Beach  1:00:53

Yeah, and that’s similar. And if you’re, if you’re not at the Boster Center, and your GP doesn’t want to give this test, you can also get a mail order test, you prick your finger, you send it away, you get your results, and you can then adjust your own levels, according to what the labs are. And I know we did talk about reading labs, but it’s pretty simple for vitamin D, you can see exactly what your level is. And I know you were talking about the American units, they’re a little bit different in in Europe, but this is something that you might have just have to say okay, my doctor says this, but I’m going to go with what the lab report says because it’s like you said it’s not unsafe to supplement and the benefits far far far outweigh any potential risks, right?

 

Dr. Aaron Boster  1:01:34

Correct. I prefer if my patients don’t go above 100. And that’s just my level of comfort is within that range. There are some protocols that will go above that 125 ish, but where I feel the most comfortable isn’t that 50 to 100 range. Now I have to do something which is inappropriate during a live stream, I have to go to the bathroom really bad. Take care of like three minutes, otherwise, I’m going to wet myself during the presentation.

 

Regina Beach  1:02:01

We don’t want that to happen. Right. Okay. Thank you understand. All right, we will let Dr. Boster take care of you know, he’s a human like the rest of us and I know that you know, as people with MS are affected by MS. You know how urgency works, I’m just going to check out some of the events that we have coming up. if you have not yet joined the live well hub that is our new, as of this year, private online community. It is really amazing. It’s free to join, there’s an app you can download on your phone or you can access it via a web browser. The live well hub has lots of live streams that are not on our YouTube channel. They’re not anywhere else. So that’s with professionals with our array of amazing facilitators. We just had one on nutrition, we have weekly exercise classes, yoga classes, functional movement classes with a variety of different instructors. So some of those we have meditation and yoga with Patricia Hawley coming up. Oh my goodness, excuse me, and physical activity to increase energy with Veronique Gaultier- Simmons who is an OMSer herself. And we also have a mini pathways to Overcoming MS course that is coming up. It’s a three week course to bring the Overcoming MS program to life with Dr. Johnny White and some of our other facilitators. So you can find all of those at our website on the events page. And like I said, check out the hub. There’s a lot of things wonderful things happening. Dr. Boster, you came back with a furry friend who is this?

 

Dr. Aaron Boster  1:03:57

This is Mutu, our cat named after a pokemon.

 

Regina Beach  1:04:05

Yeah, no, no worries.

 

Dr. Aaron Boster  1:04:07

50 year old bladder can’t make it an hour and a half apparently can’t make it an hour.

 

Regina Beach  1:04:11

You know what, that’s what I was saying, that people with MS really understand the urgency a lot of the time so yeah, no, no worries whatsoever. Okay, this person was diagnosed eight years ago. And their neurology team has never mentioned diet and lifestyle as an important component to their MS. treatment plan. They did recommend exercise, but they found Overcoming MS. totally by accident last year by what they were looking at other information. So why isn’t this part of the guidance wise and spread the literature? Why aren’t all neurologists on board like you are with the whole array of things that we can do to help ourselves.

 

Dr. Aaron Boster  1:04:48

Lack of education in allopathic medicine is the answer. That’s why so, so I went to a traditional allopathic med school. I’m an MD, and transparently my education about physiotherapy, occupational therapy, speech therapy was miniscule. And it got a little bit better when I was in neurology residency, but not very much at all. And my education about nutrition was almost non existent. I’m very embarrassed to say to you, now, I have been rather mission driven to help families impacted by MS. live their best life, and I have become convergent wiith Overcoming MS. As I do learning, I realized more and more of the value in this example of of diet. And so I think because of that, I have done a lot of extra learning on my own to become more competent in my conversations with with patients. That doesn’t solve the problem, and it is a problem. And so this is one of those opportunities to encourage people to be their own self advocate. I am delighted that this person stumbled on arguably one of the most comprehensive, best thought out behavioral tools to improve your life and MS that I’ve ever seen. And I wish that it was more more common, particularly here in the United States. You know, I asked people to be five for five when they’re fighting agaianst MS. And as I rattle these off, they’re gonna sound very, very familiar to OMSers, number one is to not smoke stuff. Smoking speeds up MS by 50%, it doubles the risk to develop MS. And stopping smoking slows it down. Now behind that is a really big conversation about other cardiovascular risk factors and brain health. Number two is to exercise as part of your lifestyle, which means it is woven into the fabric of your week, you’re not punished when you don’t do it, and you’re not rewarded when you do it. It’s just something that you do. And it needs to be integrated into just part of your daily activities like brushing your teeth and wearing clothes if you wear clothes. Number three is to eat smart. And this really gets into a tremendous amount of work, particularly for red blooded Americans, as we learn to increase our water game, as we supplement vitamin D. And most importantly, as we avoid heavily processed foods, sugar laden foods, fried foods, fast foods, and foods with ingredients that you can’t pronounce, because those are not foods, those are chemicals. That’s number three. Number four is the daily practice of mindfulness, spending at least five, if not 10 minutes a day, actively being in this present moment without prejudice. I always tell people, if you’re having sex and thinking about work, you’re doing it wrong. All right. So you need to be in the moment thinking about the moment to be mindful. And that is so important, because stress worsens, MS. And mindfulness is a tool to learn to manage stress, in as I speak about being five for five, number five is to take the most effective DMT that you’re comfortable with, and make sure that it’s working. And so to the OMSers listening, that should sound very, very familiar. And that is me learning and becoming convergent with all of the collective wisdom collected into the concepts of OMS.

 

Regina Beach  1:08:26

Right. What are your best recommendations for cold and heat sensitivity? How can we best manage this symptom?

 

Dr. Aaron Boster  1:08:33

So so we have to be planful, you don’t want to be caught with your proverbial pants down. Here in the Midwest, we go through four proper seasons, you are from Ohi0 so you know that in reality, it could be 70 one day and snow the next day and be 30, for real. And so being planful is really, really important. So let’s talk about winter. Right. So we have to be aware that winter is a fall risk because it’s slippery outside. And unfortunately, if we’re not careful, we could slip on ice and God forbid shatter a hip or something bad like that. We have to be aware in the winter that the cold ambient temperatures can make spasticity much worse. And we have to be aware that we’re gonna go from freezing cold outside in Ohio to really really overly warm inside. And so we have to do things like wear lots of layers, we have to allow time to get inside and take layers off so you don’t overheat and to put layers back on. We have to time the activities that we do, we have to stretch more often and take extra baclofen There’s a host of things that we have to do to be prepared for winter weather. Let’s take heat because it gets properly hot in Ohio in the summers you know well over 100 with a pretty decent humidity. And in the setting of heat we can see motor fatigue and heat sensitivity. People will feel like their energy is being zapped And so we can do things like use cooling vests, we can do things like hydrate with ice water to cool us from the inside. We can do things like seek out activities to exercise in water, where the water wicks away the heat, we can also time the activities of the day so that we don’t go for our, our daily constitutional walk in high sun. we can choose to do that before the sun comes out in the morning, we can mow the lawn as the sun is setting in the evening. So we have to be very thoughtful, we might take advantage of things like Ampyra, which is in Europe Fampyra. Because in the people who respond to it, we find that that actually buttresses against heat sensitivity. So the bottom line is temperature massively can affect MS. And I have patients that have trouble in the winter, and they have different trouble in the summer. And so by being planful, we can game out how to continue to live your best life. One last thing is exercise. If you like walking in Ohio, that’s great, except for the winter in the summer. So we have to come up with other styles of exercise so that you can keep on keepin on.

 

Regina Beach  1:11:09

Is it possible that many stroke lesions get mistaken for MS lesions or vice versa?

 

Dr. Aaron Boster  1:11:16

Respectfully, not if you know what you’re looking at.

 

Regina Beach  1:11:18

Yeah great.

 

Dr. Aaron Boster  1:11:19

You should be able to tell the difference.

 

Regina Beach  1:11:21

Okay. So not to worry, your neurologist should be able to,.

 

Dr. Aaron Boster  1:11:25

They don’t look the same.

 

Regina Beach  1:11:26

The radiologist will be able to, whoever is looking at these scans are able to see.

 

Dr. Aaron Boster  1:11:30

Sometimes where there’s a little bit of a head scratcher. But by and large,  it’s not the same. They don’t look the same. So you should be able to differentiate them if you’re competent.

 

Regina Beach  1:11:38

Right. I want to pivot to some of the live questions. We’ve had so many things happening in the chat. Can we do some rapid fire just getting as succinct and get to the point.

 

Dr. Aaron Boster  1:11:48

I promise not to be so verbose. (laughter)

 

Regina Beach  1:11:49

Oh no, you’re wonderful. And the questions that you’ve answered, so in depth are great, but I want to just kind of get as many for the people who are in the houses. Yes, yes. Yes. How soon will we see drugs that help to repair damaged myelin?

 

Dr. Aaron Boster  1:12:03

Within five years.

 

Regina Beach  1:12:04

Amazing. How much do you think mental health and MS are linked?

 

Dr. Aaron Boster  1:12:09

Like 90%? Like a lot? Like a bunch of bunch?

 

Regina Beach  1:12:12

Yeah. How do you know, or rather do you know of any possible long term side effects with Kesimpta?

 

Dr. Aaron Boster  1:12:20

No, I don’t.

 

Regina Beach  1:12:23

That’s great. Yeah. Do you recommend taking dietary supplements that have been clinically proven to be beneficial to MS that such as lipoic acid propriate, a high doses of omega three fatty acids like DHA and EPA?

 

Dr. Aaron Boster  1:12:39

Um, so without getting into the weeds, there are some value in both those. I think the fat omega three fatty acids is absolutely on point. And I think that’s an excellent supplement for people impacted by MS. Alpha Lipoic. acid has some data for pain control in neuropathy, which is not MS. Some of my patients feel that it helps them with neuropathic pain, some don;t.

 

Regina Beach  1:13:05

Right. So try it. Like you said it hits the mark. It’s not too expensive. It’s not going to hurt you see if it works for you. This is something I’m really interested in. Are there benefits to red light and near Red Light Therapy for people with MS.

 

Dr. Aaron Boster  1:13:16

I don’t know. I used to think that that was a bunch of silly talk. Although more recently, I’ve seen some very provocative early data that suggests that red light therapy may actually alter the immune response. So my answer is I really don’t know.

 

Regina Beach  1:13:33

So maybe, we got to watch this space.

 

Dr. Aaron Boster  1:13:35

We need a atudy.

 

Regina Beach  1:13:36

. Yeah. Do you think atrial fibrillation can be caused by multiple sclerosis?

 

Dr. Aaron Boster  1:13:43

No.

 

Regina Beach  1:13:45

Can you explain what that is for anyone who’s not familiar?

 

Dr. Aaron Boster  1:13:47

So your heart is a pump that’s actually two pumps, pumps blood all over your body. And if the pump malfunctions, it can flutter and so it won’t pump correctly. And that’s called atrial fibrillation which can actually be potentially fatal. And that’s that is not caused by multiple sclerosis, ever that I, that I’ve ever heard of ever.

 

Regina Beach  1:14:10

Great. Um, can you measure the effectiveness of DMT by the number of lesions seen on an MRI over time, or only by the symptoms experienced is a combination I know we touched on this a little bit but maybe coming down

 

Dr. Aaron Boster  1:14:23

so So the vast majority of the medicines that are approved to treat MS have evidence demonstrating decrease relapses rate, decrease progression of disability on exam and decrease new or enlarged or enhancing spots on the MRI and slowing brain volume loss. So it’s an and not an or.

 

Regina Beach  1:14:46

How do you differentiate transient ischemic stroke from MS.

 

Dr. Aaron Boster  1:14:52

So a TIA, or a transient ischemic insult is a vascular problem where blood supply gets cut off and somebody loses a function for a short period of time, and then it comes back. Sometimes we can sort it out by very careful clinical history. Sometimes we can sort out on imaging. And they oftentimes they don’t overlap so much that we can’t figure out one from the other.

 

Regina Beach  1:15:19

But it’s possible that someone with MS. Could have, it’s possible to have both.

 

Dr. Aaron Boster  1:15:25

If a human being who happens to have a mess also happens to have cardiovascular risk factors, say uncontrolled diabetes, high cholesterol, high blood pressure, things like that, then they’re also at risk of TIAs and strokes. And so sometimes, as my mentor used to say, nature can be too generous.

 

Regina Beach  1:15:45

Um, can you give us a brief overview of what is smoldering MS?

 

Dr. Aaron Boster  1:15:49

Yes. So smoldering MS is a new term for an old concept, which is allowing us to be more accurate when, when describing MS and opening our eyes to new research opportunities. Many people listening to this experience the following, they go to see the neurologist and the neurologist is all happy because the MRI is stable, and their exam looks stable. And they say Yeah, but why am I doing worse? And then there’s this kind of like uncomfortable, gaslight moment where there’s some hand waving and the neurologist says something to the effect of, Oh, honey, you’re okay. Which doesn’t really answer the question. And a lot of patients are frustrated by the fact that they haven’t had a new attack, they haven’t had new spots, and yet, they’re not doing as well. Right. So what is that? That’s smoldering MS. It’s a slow decline of function in the background. And the reason it’s so important to talk about it is it’s honest. Right? So so our medicines can stop inflammatory aspects of MS. Better than they can stop the smoldering MS. And so acknowledging it is to be honest with the human being about their experience, please. And it allows us to be honest about our research needs, and about finding new new successful therapeutic avenues.

 

Regina Beach  1:17:12

Great, very succinct. For someone who struggles with walking, would you recommend an elliptical? Or what? How can we do more cardio if walking and running aren’t really in the cards for us?

 

Dr. Aaron Boster  1:17:25

I’m going to answer the question, stealing the answer from a friend of mine. So Dr. Gretchen Hawley is a PhD level neuro physical therapist with a specialty in MS. And she taught me this. So she likes to have people with MS do their cardio with their arms, to preserve their legs for strength for like moving around and walking and stuff. And one of the most clever ways of doing that you’ve you’ve heard of these under the desk pedallers. It’s like a little stationary bicycle, well you can put it on a tabletop, you can hold it with your hands, and you can sit here like this and peddle the hay. And you can get your heart rate up. She has given examples of literally doing like boxing movements, and things like this, and you can really get your heart rate up just by moving your arms around. That’s how I recommend that we try to work on cardiovascular health, particularly when using our legs isn’t going to isn’t going to be a successful tool.

 

Regina Beach  1:18:25

Right, and then we can save the legs for technique, strengthening, balance,

 

Dr. Aaron Boster  1:18:31

All the things that we need to get through the rest of our day. Amen.

 

Regina Beach  1:18:34

Great. Um, when would you recommend HS CT? And what age and stage of progression would be? Would you be eligible for this type of stem cell therapy?

 

Dr. Aaron Boster  1:18:45

So in the United States where I practice, it’s not FDA approved. So it’s only done in the context of research. In the UK, where you are, the NHS will allow it for certain criteria. I don’t feel competent to speak about the specifics. Suffice it to say that it’s for what the Europeans describe as aggressive. MS. Right. When I look at the totality of the data, I think that the person in whom a stem cell transplant is most likely to be beneficial is in someone who is a young age chronologically, and with relapsing MS, with very frequent attacks that are occurring despite highly effective medicines. So that’s the phenotype of who I would like to consider a stem cell transplant for,

 

Regina Beach  1:19:36

Right. What’s the efficacy of Aubagio compared to the infusion medicine?

 

Dr. Aaron Boster  1:19:45

I can only imagine that they’re asking a question about the Aubagio against the BTK inhibitor, or the Aubagio against the Frex. And the answer is,  we don’t know that’s why we’re doing the trials. So when we that’s literally the question that’s being asked. asked and so that is the answer that we will get as these trials conclude.

 

Regina Beach  1:20:04

And if this question is comparing Aubagio to Tysabri or Ocrevus.

 

Dr. Aaron Boster  1:20:09

 So those comparisons have not been done in any large manner. There’s a couple of very, very small studies looking at Tysabri and Aubagio.. I’m not aware of studies that look at Ocrervus against Aubagio. I think that most neurologists would hands down say that the monoclonals are much more effective. They’re much more effective at decreasing relapses much more effective at slowing disability progression, much more effective at slowing brain volume loss, much more effective and new MRI lesions. But again, that’s looking at different populations. So that’s not like a like a like a class one study.

 

Regina Beach  1:20:50

Okay, I’m not familiar with this drug. Do you have information about forlumab trials for secondary progressive MS?

 

Dr. Aaron Boster  1:20:59

I’m not sure what that word is. So let’s skip that one.

 

Regina Beach  1:21:02

Okay that’s fine. If you’re not familiar with that, what do you think about the Coimbra protocol, which is similar to what we were talking about earlier with really high vitamin D though,

 

Dr. Aaron Boster  1:21:10

With little time left on the clock, the this protocol is ultra high vitamin D. I, again limit my vitamin D supplementation push the level up to but not beyond 100.

 

Regina Beach  1:21:23

Great. Do you know of any connections between MS and thyroid disease?

 

Dr. Aaron Boster  1:21:29

Yes, interestingly, so people impacted by MS might be slightly higher risk of other autoimmune conditions chief amongst them being thyroid. Also people impacted by MS have a slightly higher risk of thyroid cancer, it would appear compared to the general population with a risk of about point 3%. So not we’re not gonna really high but it’s higher than general population. So it’s not uncommon that thyroid can be a little bit Whoa, you know array. Also, some of the depending on which medicines we’re using, we may need to monitor thyroid. So for example, interferons can mess with thyroid, Lemtrada, Alemtuzumab can mess with thyroid. So I find myself checking thyroid frequently in my practice,

 

Regina Beach  1:22:14

Right. Um, so this person is asking about the relationship between autoimmune disease and leaky gut. So can you improve symptoms? If you heal the gut with probiotics and improving the diet? What do you know about that?

 

Dr. Aaron Boster  1:22:28

So so this is a fledgling field, this brain gut connection related to MS. It’s very, very exciting. I’ve actually made a couple of YouTube videos on the topic because I’m fascinated by it. In other autoimmune conditions, which occur in the gut, all right, so like Crohn’s, ulcerative colitis, like those kind of like diseases, altering the gut microbiome, the bacteria and the microbiomes, that live in in the gut can actually affect the disease, suggestive that there is an impact the gut plays on the immune response. And theoretically, that may play a role in MS as well, which is very, very provocative. It’s still early days, and we don’t know yet. Exactly how to manipulate the microbiome with probiotics to improve MS outcomes. Now, separate from that I recommend probiotics to a lot of my patients, because people impacted by OMS have something called dysbiosis, which means that they have like weird populations of bacteria in their gut, which can interfere with food absorption can cause slow gut motility, and cause IBS or constipation. So getting my patients a probiotic, and oftentimes, a prebiotic fiber can be extremely helpful in helping them move their bowels normally and might one day turn out to help with their immune system as well.

 

Regina Beach  1:23:49

Great. So do it take probiotics eat a healthy diet, and we’ll see what the research says

 

Dr. Aaron Boster  1:23:53

Have a little kimchee, have little probiotic pill. Yeah, do it.

 

Regina Beach  1:23:57

Great. What can you tell us about benign MS.

 

Dr. Aaron Boster  1:24:01

It doesn’t exist.

 

Regina Beach  1:24:03

Great. What’s the best way to support a friend who’s newly diagnosed?

 

Dr. Aaron Boster  1:24:08

That’s a great question. So being a good listening ear, means not giving them dumb advice and saying, Oh, you have MS. Well, one time in church, I was talking to someone sitting next to me and their cousin had a dog and the dog had a friend, which was actually a squirrel and the squirrel had ms and it died and I’m sorry, right? That’s not helpful. So So being an active listener, just listening can be really, really helpful. believing them when they tell you something can be really, really helpful. Going to the Overcoming MS website and learning or going to my YouTube channel and learning to up your game to become a smarter friend is a really, really great idea. making it known that if they need help with something that you actually mean it. So a lot of Americans are notorious for offering a hand and then not actually doing it. And so following through and saying, You know what, I’m gonna make an extra an extra portion of dinner. Let me drop it off for you is a beautiful, beautiful gesture and a great way of being a good friend.

 

Regina Beach  1:25:12

Thanks. That’s a really thoughtful answer. What, if any, are the long term side effects of taking refib and interferon?

 

Dr. Aaron Boster  1:25:22

So, interferon beta, were the first medicines to be approved to treat MS. They are mildly effective, but they’re better than nothing. And they have lots of side effects. Specifically, they can cause problems with liver enzymes, they have to follow the liver enzymes. And they can cause some flu like symptoms, but I am aware of zero long term problems with taking them and I say that with some degree of authority, because we’ve now given people interferons for nearly 30 years. And so I feel confident when I tell you that I don’t think there’s any cumulative long term risks.

 

Regina Beach  1:26:01

Can the fertility medication used during IVF? Trigger MS symptoms or trigger relapses?

 

Dr. Aaron Boster  1:26:09

Not that I’m aware of. But I don’t know that literature in its entirety.

 

Regina Beach  1:26:14

Okay. Do you know anything about a connection between cavity fillings and MS, especially heavy metals.

 

Dr. Aaron Boster  1:26:24

So there was a period of time in the United States where it was all the rage to have all your cavity all your fillings removed, if someone was diagnosed with MS for fear that the metal may have contributed, that’s been disproven. And so I am not familiar with an association, I would not recommend that you go through the painful procedure of having all your fillings drilled out of your head, because there’s no evidence that I’m aware of that convincingly suggests it’s connected.

 

Regina Beach  1:26:51

Okay great. Um, are there any drugs or supplements that can slow the brain shrinkage that is associated with MS?

 

Dr. Aaron Boster  1:26:59

Yes there’s one that is really, really potent. So get out a pen and paper because I want you to write this down. Ready? Exercise. Exercise is arguably some of the very, very best data to slow brain volume loss. And it doesn’t have to do with MS. It has to do with brains, because you can do that, like octogenarians, that exercise have larger, more plump brains and those that don’t. So exercise is hands down one of the most robust ways I’ve ever seen of slowing brain volume loss, it is absolutely the right thing to be doing.

 

Regina Beach  1:27:31

Amazing. And one final question for you. This is around how people who are living with MS can learn to accept the chronic condition. Is there any type of therapy, some mental health counseling, what can we do that is most suited to accepting and building our confidence in this, what I mean, what is often a devastating diagnosis and can be really scary.

 

Dr. Aaron Boster  1:27:59

So I don’t have MS. I’m the family member of someone who had MS. And I’ve been practicing MS. Neurology for nearly two decades. So I can share with you things that I’ve that I’ve noticed that seem to help. The first thing I’ll share with you is it takes two years to feel okay. In my experience, it takes a family about two years to emotionally feel okay, not one year, one year is not long enough. Although it generally doesn’t take three, it’s generally in my observation, it takes about two years. Now, I don’t mean intellectually, because the human being will learn the words and the things, I’m talking about waking up and saying, I’m not going to die, I’m not going to explode, I am going to be able to live my life, I will be able to have a family and I will be able to provide and all the things right, it takes about two years. So knowing that allows you to pace yourself. And what I tell people is between now and then I’m your translator, so I want your clinician or your clinical team or your MS nurse or whoever it is that you liaise with to be your translator. And if you hear read, see, think pray about something, and you’re not sure if it’s real. I don’t want you to go to Dr. Google to try to figure it out. You know, playing doctor in the bedroom is on you. But Dr. Google is not a good game to play. And so instead, I want you to turn to your clinician and say, Hey, is it really true, de de de de de, and then they can teach you, no that isn’t true or yes it is,  that is another tool is to join a community of people impacted by MS who can support you because they’re,  they’re going through similar journeys and maybe they’ve even gone through it. And they have their own wisdoms that they can share with you. So joining a support group, joining an organization like Overcoming MS is brilliant because when you tell your buddy at work that you’re tired, they say yeah, me too. They don’t understand what it means to have MS fatigue. When you tell someone with MS that you’re tired, there’s a culture of knowing because they understand what that actually means. That is very, very powerful.

 

Regina Beach  1:30:12

Thank you. Thank you so much for your time, for your expertise, for joining us today. We really, really, really appreciate it. It is always a delight, I always learn so much from you. So yes, do join the live well hub to join a circle to find other people in the tribe. And do check out Dr. Bosters YouTube videos, you will learn loads, about whatever’s coming down the pike, and any any of the DMT is that you want to know more about and lots of great lifestyle tips as well. So we really appreciate that you are open to all of the lifestyle and the lifestyle medicine and the things that we can do to live our own best lives despite diagnosis.

 

Dr. Aaron Boster  1:30:55

It takes a village and I’m honored if I get to be a participant and a village member. And as always, thank you for including me, guys. I look forward to doing this soon, I hope.

 

Regina Beach  1:31:04

Take care. So a big thank you to Aaron for today’s session. And to all of you hopefully you have enjoyed and like we said earlier, you’ll receive the recording via zoom at next week to watch back parts if you need to. And thank you so much to Jake Connor, who’s been in the background. This webinar could not have happened without him fielding the questions taking care of all the text. So thank you. Thank you. Thank you to Jake. Details of our next webinar which will be in May will be released shortly, we’ll be welcoming a panel of experts to talk about MS stress management and mental health. So keep an eye out on the Overcoming MS. socials, on the website, on the live well hub to get more information and to register for the next webinar. And the final point is a reminder, please as you exit the webinar, there will be a short survey that pops up automatically. You might not realize it’s a survey and just X out of it. Please don’t do that. Please take it’s only one minute just click on how did you find the webinar today? It’s really helpful to get your feedback that helps us plan for future programs. So if you do have a moment please please fill it in. Thank you so much. Take care. Have a wonderful rest of the day and see you soon.

This webinar was recorded on 17th March 2024 as part of our Living Well with MS Webinar Series.

Watch other recent webinars by Dr Aaron Boster:

October 2023

February 2023