Neuropathoimmunology (MULTIPLE SCLEROSIS) with Aaron Boster

Neurons. Immune systems. MRIs. Weed gummies? One of the greats in neurology, Dr. Aaron Boster, takes time to chat all about Multiple Sclerosis, a neurological autoimmune disease close to our hearts. Alie’s mom, your grammapod a.k.a. Fancy Nancy, was diagnosed with MS over two decades ago, and this episode explores in depth the factors that can cause MS, therapies that do – and don’t – show promise, how diet, exercise and mindfulness actually can help folks who have MS, the oftentimes agonizing journey to a diagnosis, and advice for those who’ve MS for a while – or are newly in the community. Also: yeah, weed.

Speaker names marked ? are inferred from speaking time and the show’s known hosts — they are not voice-verified.

• 0:00Alie Ward?

  Oh, hey, it's a cough drop in your purse that you don't want to unwrap, but you desperately want to unwrap. Ally Ward with an episode that's close to my heart, and there's a chance that you or someone you love may have been affected by it. And the verdict is, it's not fun. And a lot of people don't really get what it is. This one's on multiple sclerosis. So if you like to understand how your body routes messages to itself, this is also a great one to get a grasp on that. So this topic is close to my family. As my mom, your fancy Nancy, who originated the categories Insomnia Buster that we talked about in the Somnology episodes on sleep. Y'all love her. You love that. So my mom was diagnosed with multiple sclerosis over 20 years ago. And our family has had to go from like, what is this?

• 0:43Alie Ward?

  To how can I seek out the world's foremost expert on this? And ask all of our questions on behalf of people with MS. So that's what we did here. So this expert did their undergrad at Oberlin College, got an MD at the University of Cincinnati College of Medicine, and then hopped over to the University of Michigan for their resident and internship programs before another two-year fellowship. And they are a board-certified neurologist specializing in multiple sclerosis and founded the Boster Center for MS. They've been involved with a ton of clinical trials. They've had so many papers published. And also does awesome outreach to the public and people with MS via their YouTube channel, which has nearly 100,000 subscribers. They're pretty much the GOAT when it comes to MS.

• 1:28Alie Ward?

  So we're going to talk to them in a moment. But first, thank you to all the listeners who are signed up at patreon.com/ologies who support the show for a dollar or more a month and also submit their questions for episodes. Thanks to everyone wearing Ologies merch from ologiesmerch.com. And of course, also for $0, you can support Ologies by leaving a review, which keeps us up in the charts and as proof that I do read all of them. I pick one each week, and this one is from RJ Lecount, who wrote, "Nerds unite. Love this show so much. And the merch is an absolute nerd magnet. They wore their Ologies shirt when they were at the hospital all day and got more compliments from medical staff than they have on anything they've worn," they wrote. So RJ Lecount, thank you for repping us. Also, hospitals, great.

• 2:10Alie Ward?

  Place to meet other ologites. Can attest, 10 out of 10. Also, if you have little ones and you're looking for any Classroom Safe versions of ologies, we release them every week for free in their own feed. It's called Smologies, S-M-O-L-O-G-I-E-S. You can find anywhere you get podcasts, Classroom Safe, G-rated. It's also linked in the show notes. And thanks, of course, to sponsors of the show who make it possible to donate to a cause of the ologists choosing each week. How's your ponytail looking? Maybe like a little thinner than it used to? We've talked about this in our menopause episode. At some point, it's bound to happen to all of us. So if you're ready for thicker, fuller hair, start your free online visit today at

• 2:52Alie Ward?

  forhers.com/ologies for personalized care. So that's F-O-R-H-E-R-S.com/ologies. Individual results may vary. Featured products include compounded drug products which the FDA does not approve or verify for safety, effectiveness, or quality. Prescription required. Price varies based on product and subscription plan. See website for full details, restrictions, and important safety information. Being safer on the road starts with the person behind the wheel. That's Mazda's philosophy when designing every vehicle. Their proactive safety features help keep you more aware, connected, and engaged during every drive, which means your car does more than help protect you. It makes you a safer driver, which helps protect everyone. That's why Mazda has been named Consumer Reports' safest new car brand.

• 3:36Alie Ward?

  To learn more, visit MazdaUSA.com. Consumer Reports does not endorse products or services. This podcast is brought to you by Aura. Your body has a lot going on. Sleep, stress, recovery. You would be surprised how connected it all is. Aura Ring tracks more than 50 metrics from your finger, and the Aura app brings that information together to help you see patterns across your sleep and stress, activity, and more, so you can start connecting the dots and figure out what works for you. Learn more at AuraRing.com. Wear your best life with Aura. Okay onward. Just to get legal about it for a sec, this podcast is not intended to treat or diagnose and is for informational

• 4:19Alie Ward?

  purposes only because this is a podcast and it is not your doctor. So let's hear all about how nerve tissue works, how your spinal cord is like a holiday decoration, the five strategies anyone can use to feel better, novel testing methods for MS, public figures who are raising awareness about MS, some past, some future, and some tips for loved ones and people who have multiple sclerosis with neurologist, MS expert, and neuropathoimmunologist, Dr. Aaron Foster.

• 5:09Alie Ward?

  First thing I'm going to have you do is if you could say your first and last name and tell me what pronouns you use.

• 5:14Speaker 01

  With pleasure. Aaron Boster, he/him/his?

• 5:18Alie Ward?

  Dr. Boster, of course, as the internet knows you.

• 5:23Speaker 01

  There you go.

• 5:24Alie Ward?

  I feel like in terms of people doing outreach and communication about multiple sclerosis, I feel like I don't see many people communicating the way that you do so thoroughly and so friendly for patients. It's really lovely to see. I've sent my mom so many of your videos. My mom knows of your work. She has MS.

• 5:42Speaker 01

  Thank you.

• 5:42Alie Ward?

  So yeah, did you always want to communicate what you were doing? Or did you just want a doctor? When did you decide? Because being a doctor is enough of a job.

• 5:50Speaker 01

  So I'm a bit of a weirdo. I decided to be an MS doc when I was 12. My uncle Mark had MS since my... I don't remember a memory when my uncle didn't have MS. So I knew what it meant to have to disunpack someone. I knew what it meant when you had to help someone eat, long before I knew like what neuroimmunology was. And I remember like rather vividly, I was at my grandmother's house. My grandmother and my mother were in the kitchen. My uncle was where he always was, watching TV in the other room in his wheelchair. My mother and grandmother were crying, they were holding hands. And they weren't crying because my uncle had MS, they were crying because they couldn't get a hold of their freaking doctor. And this predates the interwebs, this predates like, things like YouTube. And I told my mom that I would learn to do it better.

• 6:33Speaker 01

  Now, I didn't know what I was telling my mom, like, I didn't know that I would be bald before I finished my training, or that I'd have to learn like, a weird lexicon. I just knew that, nobody should make my family feel that scared and alone. And so, I've been, um, kind of mission driven, like, I was a weirdo in high school that said, "I want to be an MS doc." And I sought out my education in a very directed fashion. Really, just with the goal of, like, educating and empowering and energizing families impacted by MS. Because somebody should have done that for my family, and I can't help them, you know, they've passed on. But, then if I can help someone else's family, that really fills a bucket for me. And I was, I don't know, I think it was like, 2015. And I was in clinic with my fellow, I was training this fellow.

• 7:16Speaker 01

  And someone didn't show up, and I got all pissed off, and so I handed him my phone, and I said, "Record this." And I just recorded what I was gonna say to the patient.

• 7:24Alie Ward?

  Dr. Boster started uploading videos to YouTube when he realized that patients, the ones in his care, or people he would never even meet, could learn more and educate their loved ones, or use the video for reference later. Because in a doctor's office, it can be information overload.

• 7:40Speaker 01

  You may have, like, rushed through traffic, or you may be really scared, or who knows. So, if I can convey that same snippet of information and put it on the interwebs, then you can watch it, like, at 3:00 in the morning in your bathrobe, that's the right time for you. And sometimes with MS, like, you know, you might not take it all in the first time, so then you can watch it again. And it just seems like, um, a really solid way of trying to convey information in a meaningful fashion.

• 8:07Alie Ward?

  How many people have MS? Because my mom's had it for, she got diagnosed 20 years ago, but she had it for years before that, without the doctors knowing what it was.

• 8:14Speaker 01

  So, it's a really interesting point you bring up. Until very recently, 2019, we thought that there were about 400,000 people in the United States with MS. And it wasn't until 2019, when there were some proper epidemiologic studies done in the United States, that they realized that we were really wrong. And there's a million people in the United States alone that have MS.

• 8:35Alie Ward?

  Wow, what?

• 8:37Speaker 01

  Yeah, and so it's not a rare condition. And something really culturally cool has happened, at least from my perspective. We've started to see MS enter into the mainstream. You know, so there was the West Wing TV show where a character on the West Wing, the person who played the president had MS. And I can't tell you how many people with MS, it helped normalize. Like, I've had people tell me, I used to inject each week with the president.

• 9:02Speaker 01

  Just seeing MS on TV helps normalize it. And so I think that it's become a little bit less stigmatized and a little bit more mainstream than it was even, you know, when we were kids.

• 9:12Alie Ward?

  Mm hmm. And Selma Blair, Christina Applegate, people that

• 9:15Speaker 01

  Yeah.

• 9:16Alie Ward?

  my, our generation, maybe Gen Xers, boomers grew up with. Now we're seeing people that they watched as teenagers who are diagnosed.

• 9:24Speaker 01

  That's exactly right. You're right. You know, and the famous people with MS of the last generation didn't have access to care. Richard Pryor, you know, the Mickey Mouse Club.

• 9:34Alie Ward?

  Annette Funicello was a mouse catier and a star of 1960s beach party movies. And she kept her MS diagnosis private for years until rumors swirled that her balance issues were due to alcoholism. So she was like, no, jerks, I have MS. And she later established the Annette Funicello Fund for Neurological Disorders. But this was 40 years ago.

• 9:56Speaker 01

  Like, these folks went through what we unfortunately call the natural history of multiple sclerosis, like what happens if you don't treat? And so we're now seeing a generation of people treated, and it's a very, very different set of variables, a very different condition in that regard.

• 10:10Alie Ward?

  And now that we know about how many people have it, okay, we know what it is. But how do you describe it to people who maybe first diagnosed? They don't know what it is, or someone who asks you what you specialize in?

• 10:21Speaker 01

  Right on. So I explain to people that in order to understand MS, we have to think about the immune system, right? So there's all these organ systems in the body, like, you know, the cardiovascular system pumps blood all over the place. And the immune system is the part of your body that fights off bad guys, like foreign invaders. So when some kid coughs on you and gives you a virus, the immune system identifies it as a bad guy and whoops it.

• 10:43Speaker 02

  And you cover your mouth when you're coughing.

• 10:44Speaker 01

  And The immune system is not supposed to attack yourself. And so if the immune system sees part of you, it should just be like, hey, me? And leave you alone. Now, sometimes the immune system makes an error in judgment. And it identifies part of your body as a foreign invader. And so that's called an autoimmune condition. And there's a lot of autoimmune conditions that people are pretty familiar with. So for example, if the immune system beats up on the pancreas, we call that childhood diabetes.

• 11:11Alie Ward?

  And this was called childhood or juvenile diabetes because the onset and the diagnoses of this autoimmune condition tends to happen early in life. But we now call it type one, or you can call it TD1 if you're cool. You can check out our two-part diabetology episode with self-described diabetic diabetologist, Dr. Mike Natter. Oh, we also have a long COVID two-parter with Dr. Wes Ely, and we'll link those for you in the show notes. But yeah, lots of ways to have an autoimmune issue.

• 11:39Speaker 01

  Or if the immune system beats up on the joints of the hands and feet, we call that rheumatoid arthritis. So I explained that multiple sclerosis is an autoimmune condition where the immune system unfortunately attacks the holiest of holies, the supercomputer that runs the body, the brain, and the superhighway, the spinal cord that takes the information up and down. And depending on where that attack occurs determines what the human being experiences. So if the immune system attacks the nerve that runs the left eye, the human unfortunately is not going to see very well, and it's going to hurt like the dickens when they move their eye. That's called an optic neuritis. Or if the immune system attacks the spinal cord, then the legs may be numb and tingly or weak, and the down there is the bowel, bladder, bedroom, part of our bodies don't work very well.

• 12:20Speaker 01

  So in a nutshell, that's how I like to try to help introduce MS to somebody.

• 12:25Alie Ward?

  And so with MS, there are said to be different subtypes. There's relapsing remitting, which means it can come and go in severity or episodes. There's primary progressive, which means kind of a stable worsening of symptoms and lesions. And secondary progressive can relapse and remit, but gradually does worsen. And these classifications have changed over the years since my mom was diagnosed, which gets confusing. But my family always kept an eye out because we would hear that there were different clinical trials for different types, or certain medications were only recommended for, say, relapsing remitting. And my mom has primary progressive.

• 13:02Speaker 01

  So there are different camps of MS neurologists. I'm in the camp, I believe it's actually one condition with different phenotypes.

• 13:10Alie Ward?

  Oh, okay.

• 13:10Speaker 01

  Although you could talk to somebody else who would say, "Nuh-uh." You know, but you're stuck talking to me. So, and when we talk about primary progressive MS, what we're really saying is the human being, typically around their 40s, started to have a slow, steady decline in neurological function. And they never had any clear-cut so-called attacks where they got really bad over a couple days and then it lasted for a couple of weeks. And we call that primary progressive MS. If the human instead had a so-called attack, flare, exacerbation, relapse first, and that's where you lose a neurological function and you try to hide it from your family. And after a couple of days, you gotta come clean, like you can't feel your leg.

• 13:51Speaker 01

  Well, then we call that a relapse and that person is said to have relapsing forms of MS. Now, here's the thing. If you follow the relapsing MS patient 10 years, they start to have a progression of disability, which perfectly matches primary progressive MS.

• 14:06Alie Ward?

  Huh.

• 14:07Speaker 01

  So there are those of us that believe that the form frust of MS is this slow, steady decline and that some patients skip or avoid the early relapsing phase, which is kind of like noise on top of the actual real disease.

• 14:22Alie Ward?

  Got it.

• 14:23Speaker 01

  And that's a concept that is not ubiquitously accepted by all MS neurologists, but, um, you know, they're wrong.

• 14:31Alie Ward?

  What about the etiology? You mentioned like your body, your immune system gets overactive. It starts attacking neurological tissue. And the multiple and multiple sclerosis, can you talk a little bit about what that means?

• 14:45Speaker 01

  Absolutely. So the word sclerosis is Greek for scar, because God forbid we use like standard language. It would be way too easy for everybody to understand. So, so multiple sclerosis is really a reference to back in the ancient days of yesteryear where people did like autopsies and they would say, "Oh, my gosh, there are multiple scars here." So if you think about our understanding of what causes MS is fledgling. So what we think happens, and MS is not a classic genetic Condition. So most people listening might think of like a genetic condition as like cystic fibrosis or like sickle cell anemia, where if you have it, a certain number of your kids are gonna have it. And in MS, it's not so straightforward. But what it does mean is you probably have certain haplotypes

• 15:28Speaker 01

  of genes that encode for your immune system that you share with that greater population.

• 15:33Alie Ward?

  Mm hmm.

• 15:34Speaker 01

  Then we believe that there's certain environmental risk factors which might increase or decrease a given human's risk to develop MS. For example, exposure to smoke. So firsthand or secondhand smoke can literally double an individual's risk to develop MS.

• 15:49Alie Ward?

  Wow.

• 15:50Speaker 01

  And so low levels of vitamin D pre puberty also change the risk. We then think that your body sees an infection and we think we've nailed it down to the kissing flu, to you know, mononucleosis EBV.

• 16:03Speaker 03

  Yeah, the Epstein-Barr.

• 16:05Alie Ward?

  Yeah.

• 16:05Speaker 01

  And your body contracts EBV and your immune system identifies it as a bad guy. And your immune system makes an arsenal of T cells and B cells that make antibodies against EBV.

• 16:16Alie Ward?

  Okay, so it's like mono, you're out of here. I got you. Yeah, and I had mono that landed me in the hospital, so.

• 16:24Speaker 01

  Amen. Yep, that's exactly right. And so you survived mono because your immune system cleared it. And you keep an arsenal against mono the rest of your life. But in some people, those same cells that identify mono by accident now identify your brain as mono. And so that's called cross reactivity, like where the antibody binds to something it's not supposed to. And when that happens, when that gets set up, we don't know how to undo it. Now, it's really a little bit interesting because we've known that mono could have potentially been requisite to develop MS. But they did a really cool study with the Veterans Administration Hospital with 10 million Americans, like a lot of Americans. And what they found was 95% of that population has been exposed to mono.

• 17:08Speaker 01

  You have, I have. But of the 800 people in the study with MS, all of them but one had been exposed to mono. And so those numbers are actually highly statistically significant. And it sort of reinforces this concept that mono may be a requirement to develop MS.

• 17:26Alie Ward?

  Wow.

• 17:26Speaker 01

  Now, that doesn't mean that a pasty white kid who was around some smoke and didn't have a high vitamin D and got mono is gonna get MS, not at all. But as we understand, those are the steps that are probably involved in later on going on to develop MS.

• 17:40Alie Ward?

  Well, you know, I'm wondering too, because you mentioned Richard Pryor, I'm thinking Montel Williams, obviously, it's not just people of European descent, but if you're genetically, historically have evolved to handle high amounts of UV radiation and then say your family gets stolen and moved to a different continent and you live in, you know, Michigan or something, do those levels of vitamin D not being really on par with what your evolution has been like, like, does that have any correlation?

• 18:08Speaker 01

  It's a really interesting discussion, you know, I was trained in Detroit, Michigan, where there's a very large population of African Americans that live in Detroit, and as a result, there was a very large African American MS population that we saw. And when I was coming up through the ranks, I was taught incorrectly that MS was a disease of young white women, and that ethnic minorities were less likely to develop MS. And that's false. And so it turns out that the percentages of MS amongst African Americans, Hispanic Americans are the same as white people, there's just more white people in the United States. Now, what's very, very important is that unfortunately, if you are an ethnic minority and you get MS, the disease is driven faster. So African Americans with MS tend to have

• 18:51Speaker 01

  a much more aggressive disease course, Hispanic Americans tend to have a much more aggressive disease course. And that factors into our thinking about how aggressive we are with therapies, etc.

• 19:01Alie Ward?

  And is that also have anything to do just with systemic factors, like who has access to care and who is getting seen by doctors, who's getting listened to?

• 19:10Speaker 01

  It doesn't appear to be. Now, of course, there are some very serious concerns about access to care, which we, I don't want to gloss over. However, there's some beautiful studies done mostly out of UCSF, which try to parse that out in separate from those issues, just the ethnicity alone, there is a difference in severity of disease, even when you parse out like socioeconomic things and the like.

• 19:33Alie Ward?

  And for anyone living with MS, where is the fatigue coming from? Well, for people who don't have MS, Erin helps visualize what it's like to be in their shoes.

• 19:43Speaker 01

  So if you and I were to go for a stroll and I attached weights to your feet and you kept time with me, so we're walking in step together. At the end of our stroll, and you finished at the same time I did, you're exhausted, way more tired than I am, because you were dragging weights behind the whole time we were walking.

• 20:00Alie Ward?

  Mm-hmm.

• 20:01Speaker 01

  When you look at where the brain damage occurs in the setting of multiple sclerosis, it's most commonly in the so-called white matter. Now, the white matter are the wires connecting the parts of the computer. So when one side of the brain, the cortex, the thinking part, wants to communicate with the other side, it sends electrical messages through the wires, the white matter. And when you have new lesions, that's a doctor term for like the white spot, the area of brain damage that you can see on the MRI, the brain rewires around it.

• 20:33Alie Ward?

  Oh.

• 20:34Speaker 01

  And so, yeah, what ends up happening is the brain repairs itself to the best of its ability, and the human being can continue to do whatever function that is, but they use a boatload more brain to get the job done. To make that point, a long time ago, I was an assistant professor at a university, and we were doing a really cool study where we put people into a functional MRI machine, and we had them wiggle their finger. And if a, quote, "healthy control" wiggle their finger, you would see the contralateral motor cortex light up like in a textbook, like normal stuff. When someone with MS wiggle their finger, both sides of the brain lit up like a Christmas tree.

• 21:10Alie Ward?

  Wow.

• 21:11Speaker 01

  They were using tremendous amounts of brain to get the job done. Now, many of them were able to do it just as fast, just as accurately as a healthy control. But coming back to this fatigue thing, it's my opinion, at least to some degree, that the reason that someone with MS suffers from such profound fatigue, the most common symptom in MS, is because in order for them to get the job done, they're using a lot more brain. You know, they're using a lot more real estate.

• 21:34Alie Ward?

  Mm-hmm. Which is such a good point, I think, when we talk about chronically ill people and disabled folks who have what's called invisible illness.

• 21:42Speaker 01

  Yes.

• 21:43Alie Ward?

  They're wiggling their finger, but

• 21:44Speaker 01

  Yes.

• 21:45Alie Ward?

  they can't do it for longer, and no one understands exactly what it's taking for them. They might not understand. My mom probably doesn't understand exactly how much brain power she's using to get through her day.

• 21:54Speaker 01

  It's such a good point. I'm really glad that you brought it up because the vast majority of pathology in MS is invisible. And, you know, honey, you look so good is a very common comment. And, you know, a really savvy patient will say, I'm not faking sick, I'm faking well. And you think about the most common symptoms in MS. You know, I think about the up there's so energy, mood, thinking and memory. They're all invisible. The leading cause of loss of work in MS is not loss of leg function. It's loss of ability to concentrate and stay awake. Or you think about the down there's bow bladder bedroom. Those are invisible symptoms to the outside observer. And they're devastating in many respects. And so you're spot on. I try sometimes to give an example to like a well intended spouse.

• 22:39Speaker 01

  Who might say something like, well, I'm tired too.

• 22:41Alie Ward?

  Okay, but one person's tired is not the same tired as MS tired. Imagine what your brain and body would feel like if you tried like pulling back to back all nighters. And then went to work, Aaron says.

• 22:56Speaker 01

  So two nights of no sleep. Then the next morning, we're going to go for a walk and talk about fatigue. It's that kind of fatigue where the human being is desperately trying to keep their eyes open. They're trying to make eye contact and they're desperately trying to take the information in. You know, I'm going to date myself, but when I was in medical training, we didn't have duty hours. So you stayed until the work was done. And I remember 36, 40 hours into working. You know, there'd be a long hallway in the hospital and I would close my eyes while I was walking just to take a break. You know, and just hope I didn't smack into a wall. And it's that kind of, I call it pathologic fatigue that many people with MS struggle with. You know, and then their spouse or their loved ones say, well, you don't look tired. So you don't look ill informed.

• 23:43Alie Ward?

  It's a good one.

• 23:45Alie Ward?

  What about things like diagnosis and symptoms? Cause obviously the more ahead of it you get, the better treatment you get, the more knowledge you get.

• 23:54Speaker 01

  Amen.

• 23:54Alie Ward?

  Your life's going to be better. But a lot of times I know with my mom, my mom had something vague going on. Didn't know what it was. My mom called it this thing for a good six years before she was diagnosed. And then even then she still called it this thing. But people who have MS, I feel like. You ask him about the illness, sucks. Ask him about the diagnosis and they will go off.

• 24:17Speaker 01

  Yeah. You touched on so many really important things. There is a prodrome before MS. Prodrome defined as vague symptoms prior to a diagnosis. And when you look at like claims data where people who later on get MS and you go backwards three to five years, you'll see a massive uptick in prescriptions, a massive uptick in ER visits, hospitalizations and doctor visits. And they tend to cluster in psychiatric, gynecologic and gastro like symptoms. Because the symptoms are something involving the central nervous system. So if you said like, could MS cause blank, the answer is probably yes.

• 25:00Speaker 01

  MS doesn't do like skin primarily, it doesn't do joint primarily, but just about anything else is a possibility. And so, you know, the most common presentations are in optic neuritis where the optic nerve's affected, or a transverse myelitis where the spinal cord's affected, or a brainstem syndrome. But those don't always come to the attention of doctors. I can't tell you how many times someone says, yeah, I was in my twenties, I was running a lot, I thought my shoes sucked because my feet were numb and then it went away. And so I just ignored it and I didn't see anything else for years.

• 25:31Alie Ward?

  Yeah.

• 25:32Speaker 01

  They probably were having an attack and I'm not trying to suggest that they weren't doing a good job. They did what all of us do. We just like keep on keeping on. And we don't have like a tricorder like on Star Trek where you scan someone.

• 25:42Alie Ward?

  Yeah.

• 25:50Speaker 01

  Say, there you go.

• 25:51Alie Ward?

  I wish.

• 25:51Speaker 01

  Me too. The second thing is really old school. It's doing an old school neuro exam. You know, the neuro exam dates back to, you know, ancient Chinese history and it's a really inaccurate thing.

• 26:01Alie Ward?

  And a neurologic exam is usually just conducted in the doctor's office, and it's a series of questions to assess mental status. Maybe they'll have you repeat a sentence. They'll ask if you know the date and time. They'll check pupils and reflexes. They may have you walk in a line or touch your nose with your fingertips. And if this sounds like something that a cop might perform on the side of the highway, well, they do share commonalities. Except the officer might not also take your blood pressure or your insurance. So the neuro exam, it's pretty analog, pretty basic, and it does miss stuff. Hell, yes, it misses some stuff.

• 26:36Speaker 01

  Now, in the 80s, this machine came out, which was really exciting, and it's called the MRI. And it's completely revolutionized diagnosis. It became gospel in 2001, and it's been revised to make it easier and faster and faster to use the MRI to make a quick diagnosis. And so we get an MRI of the brain and the spine. And if we see spots in certain locations, we can diagnose MS right there. If not, then we can old school wait for another attack, which is never the goal. We can repeat the scans at intervals, looking for new spots. Or we can depend upon a lumbar puncture, spinal tap. Now, if you're listening in Europe, most people across the pond, they're all tapped.

• 27:19Speaker 01

  Here in the United States, that happens a lot less frequently. But you can see changes on the spinal tap, on the CSF, which would then help cinch a diagnosis.

• 27:28Alie Ward?

  And a spinal tap, also called a lumbar puncture. It involves just siphoning just a wee bit of cerebral spinal fluid out from between your vertebrae, just kind of like a little sip of maple syrup. And then pathologists will check it out for increased antibodies or even fragments of nerve cells from where the insulating sheaths have been frayed by one's own overzealous and kind of like lost immune cells. But still, about 10% of folks with MS can have normal-looking cerebral spinal fluid. Now, since we've recorded this, something exciting has happened. And Aaron sent me a voice note about what's called an MS disease activity test.

• 28:09Speaker 01

  We have desperately needed better biomarkers in the field of multiple sclerosis now for some time. Now biomarker is simply a measurement which teaches us something about the human being and the most common biomarker in the MS space has been and continues to be the MRI. So we're getting a picture of brain and spine structure. There's a test which has been developed and now been validated in several very well-done trials, which is a blood test. And a high number on this test correlates with concern for disease activity, particularly on the MRI. A low number suggests disease stability. Now, this test is approved by the American FDA. It's starting to be increasingly used in MS clinics around the

• 28:53Speaker 01

  United States. It's not covered ubiquitously by insurance yet, but I think we're going to see that change. And having this new diagnostic tool, this Octave DA test, really assists in our assessment and monitoring of patients, which is pretty darn exciting.

• 29:07Alie Ward?

  So yeah, pretty darn exciting. And OctaveBio.com has more info on that test. Now, what else will a doctor do if you're present with things like tingling and numbness and vision problems, or balance issues, or fatigue, and other MS symptoms? Nearly everyone I've met with MS seems to have had a really arduous and frustrating journey to their diagnosis. Without advanced ways of diagnosing, there's just a lot of stones to turn over. And oftentimes, they're sent down the wrong path.

• 29:38Speaker 01

  A lot of things can cause you to be numb. It doesn't have to be MS. It could be B12 deficiency, you know, it could be diabetes, you know, there's a host of things. And so a diagnosis is a tough animal. And your point's very well taken, that if you talk to someone with MS, they have a story, you know, and it's generally not like a nice story.

• 29:57Alie Ward?

  Yeah.

• 29:57Speaker 01

  It makes me feel sad.

• 29:59Alie Ward?

  And for people who, let's say, I have a friend who has a tough job and has anxiety, and she's gone through periods where her hands get numb.

• 30:09Speaker 01

  Yeah.

• 30:10Alie Ward?

  A doctor said, "That's a symptom of your anxiety. That's a symptom of stress." Great. So let's say that you have something like that, and also, if you live in America, and MRI could bankrupt you.

• 30:21Speaker 01

  Yep. What do you do?

• 30:23Alie Ward?

  Yeah, what do you do if you're like, "Is this just my shoe? I have shitty shoes?" Or is this a first attack of MS?

• 30:31Speaker 01

  So I really recommend what I call the 24 hour rule. Right? So if you punched me in my face and my face got all puffy, that's caused by inflammation. And if we looked at my face tomorrow, it's more puffy because inflammation doesn't go away in a couple hours, it'll last days. When you have an MS attack, it's caused by inflammation in the naga. And if you have a symptom, it's going to last longer than a day. So as an example, if you wake up and your hands numb and you shake it out and it feels better, you probably don't have to call me. If you wake up and your hands numb and the next day it's more numb, now it's met the 24 hour rule and now I want to hear about it. Now, that doesn't mean therefore it's multiple sclerosis,

• 31:13Speaker 01

  but that rule really helps people like not lose their shit. You know, when we're talking about diagnosis, if you meet the diagnostic criteria, we diagnose MS and move forward. But there's a gray area where it looks like you might go on to have MS, but we're not sure. And that's a very scary spot for someone to be in. And they become hyper aware of their own body. Like as I talk to you, my head itches, right? And if someone had said, maybe you're going to have MS, Erin, I would ask myself, is the itchy head related? And so the 24 hour rule is how I try to help people not go bonkers trying to like sort that out.

• 31:46Alie Ward?

  Yeah. So Erin has what he calls a five for five framework to help slow the progression of MS. And we'll mention them again in more detail, but a quick overview, don't smoke, do exercise, do eat clean and take vitamin D if you're low. Take your disease modifying therapy from regular checkups and annual MRIs to medications and practice mindfulness. Now we're going to chat more about those, but let's start with the meds. And what kinds of drugs are these? Are these like the Ocrevis, the Empira, like the Gabapent? Like which of them?

• 32:18Speaker 01

  So I'll divide therapies into three.

• 32:20Alie Ward?

  Okay.

• 32:21Speaker 01

  When someone, God forbid, has an attack, we can use high dose corticosteroids or things like corticosteroids to hasten recovery. You know, you have an area of inflammation in the brain or spinal cord and you give these really crazy high doses of steroids and you quell that and you get them better faster. And some of us believe you get them more better. And so that's one category of medicines or therapies. And that's an as needed kind of thing when someone, God forbid, has an attack. Then separate from that, we treat symptoms. So symptoms are things that suck. And so you use the example of AMPYRA. AMPYRA is a medicine which helps buttress the human against heat sensitivity. Not I dislike heat, but when my body gets overheated, I go blind again, God forbid. Or when my body gets overheated, I can't control my bladder. And a medicine like AMPYRA can buttress against that.

• 33:06Speaker 01

  Or you use the example of gabapentin, neurontin. This is a medicine invented to treat seizures, but it's used ubiquitously to treat neuropathic pain. MS is a very painful condition and people can have a limb that looks normal, but it's burning. And so we can use the symptomatic medicine to make that better. There's a third category of medicine, which really is what I was talking about, which we call disease modifying therapies. And these are medicines that literally change the disease course. They change the trajectory, they decrease attacks, they decrease the new spots on the brain, and they slow the accumulation of disability. Use an example of OCREVIS, which is probably the most utilized medicine in the world to treat MS. And it's the only medicine that can treat both relapsing and primary progressive forms of MS.

• 33:51Speaker 01

  I'll tell you just a quick story. I was involved in the OCREVIS trials and it was 2017. We had sort of like a sense of the results, but I paid a lot of money to fly to the big international meeting in Barcelona, Spain. And I sat in the audience and I cried like a little kid as they presented the PPMS data. Because this was the very first time in the history of the universe that we did it. We finally were able to impact primary progressive MS. You know, many of us have spent clinical trial after clinical trial after clinical trial failing at cracking that nut. And here we finally did it. And it's such an impactful thing in my life. I want to give a shout out to my patients in central Ohio who participated in that trial.

• 34:33Speaker 01

  And it's because of that that we can prove that this drug works in these different phenotypes for MS. That's a really special thing to me.

• 34:41Alie Ward?

  And this drug, the brand name is Ocrevis, is an immunosuppressant that essentially tells your immune system in hyperdrive to just cool its jets and to stop beating up on your central nervous system so much. But it's not without its own risks. So when you take the immune system down too low, you might have increased risks for infections and sometimes have cancers. Other side effects can include things like rashes and nausea and heart rate fluctuations and more. And my family was really excited about this medication because it could be used on primary progressive MS. But unfortunately, my mom did try it and her side effects were too severe to continue. Now, another no-go we have learned over the years, things like saunas, no more sunbathing,

• 35:23Alie Ward?

  desert excursions, long sleeves in July. What about heat? Why does heat make MS so much worse? Because that is something that unless you know someone with MS, you probably don't know that. But yeah, my family dreads the summer or dreads overheated winter environments.

• 35:41Speaker 01

  There's a really, really good reason. So, you know, I'm holding up this wire, right? And let's take an analogy of like a extension cord that you'd use for your Christmas lights. So you have the extension cord out and your spouse runs over with a lawnmower. It doesn't cut it in half, but nicks it. And your spouse does what they're supposed to do. They don't tell anyone. They just duct tape it up and they put it away, right? Why didn't you tell me? So then the wire no longer works 100%. It works, say, 90%. Now, later, when you get the extension cord out and you plug in two Christmas lights, they're gorgeous, they're sparkly, you just love them. And then you put in five more or 10 more lights and the whole thing short circuits because that damaged wire cannot hold a full load, right? And so this is actually what's happening with the central nervous system.

• 36:26Speaker 01

  And, you know, that wire could be your spinal cord. It's a pretty good analogy. So when there's been damage to the spinal cord and you strip the myelin, that's the plastic coating on the wire, off, you have what's called a conduction block where the electricity just doesn't go through. And then what your body does is it puts in a bunch of ion channels. And so you can conduct electricity. And let me use an analogy, the Great Wall of China. So. The way that they communicated on the Great Wall of China was every couple of miles, they'd have a bonfire. And if they saw like the Mongol hordes, they would light the bonfire. And then miles away, a guy would see the bonfire and he would light his bonfire. And you could communicate up and down the Great Wall of China wicked fast. That's the way like a wire works when it's not damaged.

• 37:10Speaker 01

  That's the way the neuron works when it's not damaged. When it's damaged and you have to put in all these sodium channels, now you can't propagate a message really quickly. And so if I use the Great Wall of China, the bonfire's out. There's no bonfire. So what the guy does, he jumps on a horse and as fast as he can, he rides down the Great Wall, which is way the heck slower. And it still gets the message there, but it doesn't work as fast. Now, let's go back to the neuron, the wire. That system is extremely heat sensitive. Those ion channels are extremely heat sensitive. So if you heat the human body up, you leach the ions out and again, you have conduction block. And when the body cools back down, it works again.

• 37:49Alie Ward?

  And if you're ever involved in the most challenging game of trivia ever, I hope it helps you to know that this is called Uthoff's phenomenon, after a late 1800s German ophthalmologist who noticed vision challenges when patients who had MS got overheated. And if you're like, how long have we, the royal we, known about MS? Well, this is news to me. But a French neurologist named Jean-Martin Charcot identified and researched several neurological disorders, contributing to the science of Parkinson's and Tourette's Syndrome and identifying MS in 1868. He also dove right into the condition of what was called hysteria, named after the uterus, because at the time, it was thought that only women could be crazy like that.

• 38:32Alie Ward?

  Now, using hypnosis, Charcot would bring out states of agitation and emotionality in patients and most famously photographed the facial expressions of this local mental asylum patient named Louise Augustine Gleece, who had been a survivor of childhood abuse and was diagnosed with hysteria. And when Louise was like, hey doc, let's nod to the photographs anymore, she was sent to solitary confinement, but then... She later escaped, dressed in a suit, looking like a dapper gent. She got out, she disappeared into the freedom of the night. She was never seen again. But yeah, Charcot did do some groundbreaking research in neurology that still holds up today.

• 39:15Alie Ward?

  But he also had a little bit of a sketch reputation and he earned the nickname, "The Napoleon of the Neuroses." But as a neurologist, he did identify MS in 1868, which was good. And then Uthoff identified this phenomenon of "Stay out of the heat, MS friends."

• 39:32Speaker 01

  Now, this drives people with MS crazy because they'll be fine in the beginning of a walk. And as they walk and their body gets hotter and hotter, they short circuit. And sometimes, you know, people they're with will say, "What the heck? You were fine, you know, just earlier today." But it's because of this heat sensitivity phenomenon. It's kind of a unique thing to multiple sclerosis, but it's extremely real. We in Ohio have four seasons and a lot of my patients during the winter months, they get stiff because spasticity gets worse when you're cold. And then during the summer months, they get, quote, "floppy" or "nudely." And that's because these areas of damage that short circuit, they don't work very well when it gets hot out. It's really frustrating.

• 40:12Alie Ward?

  Yeah. And we're talking to a kinesiologist about staying active with MS and how much those therapies can help. Because I know that it's like to thread that needle of

• 40:24Speaker 01

  Yes.

• 40:24Alie Ward?

  staying active and keeping your muscles strong, but also not overexerting yourself and not doing something that can put you in the path of a fall, which can be devastating.

• 40:35Speaker 01

  Correct. Well stated.

• 40:36Alie Ward?

  I was fortunate enough to talk to Dr. Brett Fling, who is a Colorado State University researcher and a kinesiologist who has a lab dedicated to understanding and helping folks with MS who have gait issues. Now Brett's mother has had MS for decades. And as someone who studied physical activity and disease progression, he had some expert insight into movement. So here's a little bit of that conversation with Dr. Brett Fling.

• 41:01Speaker 04

  You know, for a long time, and this was not just specific to MS, it was similar in Parkinson's disease, fall in a stroke, old age, et cetera, we would tell folks to take it easy. You don't want to wear yourself out. You don't want to get fatigued. So the less you move, the better. Turns out that is the exact wrong advice for anyone's nervous system, whether you're a healthy 18-year-old or someone with a neurodegenerative disease in your 70s. The more you can safely move your body and activate muscles, activate those nerves and communicate throughout your nervous system, I think the better off you are. So with multiple sclerosis, for a long time, this was the approach we took was don't exhaust yourself, take it easy because you don't want to get fatigued. Now, I'm not saying that you should automatically go run a marathon,

• 41:43Speaker 04

  but the more you can move and, you know, movement slash exercise is really specific to the individual. So for some folks, that might mean running a marathon. It might mean riding a bicycle. It might simply mean getting up out of your chair more, being less sedentary, walking around your house a little bit more, walking to get the mail. You know, exercise has a pretty broad meaning and definition. And so the more that you can safely move, the better is our approach nowadays. One of the things that kinesiology really sticks to and suggests that is through the American College of Sports Medicine, ACSM, which is a huge national body that sort of oversees kinesiology-based research. Their motto is "exercise is medicine." And so our, you know,

• 42:25Speaker 04

  our big picture approach is that the less sedentary time you have, the better off the body is going to be. And we think that's very true for multiple sclerosis.

• 42:34Alie Ward?

  "Exercise is medicine," and it's printed on their courtyard right outside of his lab's building. "Exercise is medicine." So it's a good thing to remember. Now, back to Dr. Boster, who echoes that.

• 42:47Speaker 01

  So a lot of times when we diagnose someone with MS, one of the things that I need them to do is to adopt exercise as part of their lifestyle. In many adults or young adults, the last time they really exercised was the glory days of high school, when they had boundless energy, you know, their neurological function reserve was unprecedented, you know, they could skip a night of sleep, they didn't care. And that's what they remember. And so they take that spirit into the gym and they have a wonderful day. They really, they do all the things. And then they're in bed for two days or three days. And so instead, what I need to help families understand is you want to use the next day as an assessment of if you overdid it. So if you do 10 minutes on the treadmill and you think that's a nothing, but the next day you're having trouble walking, it wasn't

• 43:32Speaker 01

  a nothing. It was actually too much. And so slow and steady wins the race. And there's ample data that people impacted by MS who do exercise as part of their lifestyle, they're less disabled in their lives, they maintain cognition, and they handle attacks better. And so there are so many reasons why exercise is important, and yet it ain't easy.

• 43:52Alie Ward?

  Yeah.

• 43:53Speaker 01

  That's why, you know, we really have to kind of help someone impacted by MS find that balance and the right ways to exercise and not overdo it and not use that high school mentality of if I can do one mile today, I can do two miles tomorrow.

• 44:06Alie Ward?

  Right. And also, do you give any advice to your patients on staying safe so that they don't have a fall?

• 44:13Speaker 01

  Yes. Falls are very, very scary, not just because you can hit your head, but you can shatter your hip. People impacted by MS over the age of 50 have thinning bones compared to the general population. And so you add a fall and that can be a devastating game changer. And so, so there are some things that we want to think about.

• 44:29Speaker 02

  Well, let's hear them.

• 44:30Speaker 01

  If you're not sure how to engage in exercise, one of the very best ways of getting it kicked off is to work with a neurophysical therapist. These are like freaking ninjas that understand heat sensitivity, they understand unsteady gait, they understand weakness, they they really get all this, they understand spasticity. And so they can start by assessing you and then helping you develop better gait mechanics, how to buttress against a fall, how to transfer. And then we can take that information and we can turn it into a home wellness program. Another really great place for someone with MS who wants to exercise is water. Water's darn near magical. And so, you know, in the water, you weigh less, so you can handle that weak leg better. If you're really ataxic and you're falling to

• 45:13Speaker 01

  the left, the water pushes back to the right. If you're heat sensitive, the water wicks the heat away from your body. Spasticity decreases in the water.

• 45:20Alie Ward?

  Oh, and I have so many more questions. Can I ask listener questions that were submitted?

• 45:25Speaker 01

  Oh, I would love it. Absolutely. Yeah, yeah, that's really great.

• 45:28Alie Ward?

  And before we get to your questions, my dear patrons, we will donate to a cause of Aaron's choice, and he directed it toward msviewsandnews.org, which is a grassroots nonprofit. It was founded by Stuart Schlossman, who was diagnosed with MS himself. And Stuart and the folks at this nationally-based patient advocacy organization provide educational programs and resources to empower and enhance the quality of life for the MS community, including those in rural areas. So go to msviewsandnews.org to share experiences, to gather information, and to find their monthly MS Beacon newsletter. You can also get a copy of their comprehensive Empower MS Guide. So again, a donation went to msnewsandviews.org. So thanks, Aaron, for the heads up about them. And thank you to sponsors

• 46:13Alie Ward?

  for making it possible to donate to a cause every week. This podcast is brought to you by Squarespace. If you haven't heard me gushing about Squarespace for years, it's an all-in-one website platform. Whether you're trying to grow a business you have or if you're just a baby business getting started, it has everything you need. That's where I secured my domain name. It helped me build a professional site. I can update it so easily. I've been using Squarespace since before Ologies existed. After procrastinating for years, I literally built my website in one evening. They have templates. They have flexible editing tools. Squarespace also makes it easy to share your work. You can book clients. You can get paid. They have built-in tools for scheduling and invoicing and email, all in one place.

• 46:58Alie Ward?

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• 47:42Alie Ward?

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• 48:27Alie Ward?

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• 49:11Alie Ward?

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• 49:55Alie Ward?

  If something's broken or just not right, Verbo will work to make it right. Plus, you get 24/7 live human support with every booking. Grab your stuffy, we're going on vacay. So book today on the Verbo app. If you know, you Verbo. Terms apply. See verbo.com/trust for details. Every time I record a Quince ad, I'm like, look at me wearing head to toe Quince. I feel like this is enough of an ad, I can just stop here. But if you're like, huh, what is that? Quince sells clothes and shoes and bags, even stuff for your house that are classic, well-made, and priced at 50 to 80% less than similar brands because they cut out the middleman. They work directly with ethical factories. So you have luxury quality pieces without a luxury price tag.

• 50:37Alie Ward?

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• 51:23Alie Ward?

  Okay, let us saunter into the mailbag with questions submitted via patreon.com/ologies. A lot of people wanted to know about correlation with other autoimmune diseases like Buddy freaking Guyerson, Connie Connie Bobunny, Angie Yngst, Adam Foot, and Chandler Wetherington. In Buddy's words, as someone who has both diabetes and MS, is it common for MS to show up in people with other autoimmune conditions? Connie Connie Bobunny declares autoimmune diseases are a bitch, and I agree with Connie. So yeah, do they tend to come in clusters?

• 51:55Speaker 01

  Yes, kinda. So if you have one autoimmune disease, you're statistically more likely to have a second autoimmune disease. In this setting of MS, the most common second autoimmune disease is actually thyroid.

• 52:07Alie Ward?

  Oh.

• 52:08Speaker 01

  But you will see constellations. Now, that doesn't mean that everyone with MS is gonna get a second autoimmune disease, but compared to the general population, 100%. And if you have MS, I can find someone in your extended family with some autoimmune condition almost always. Now, it doesn't mean that someone else has MS, but it could be that like an aunt has Graves' disease, or like an uncle has type 1 diabetes, or something else.

• 52:31Alie Ward?

  Yeah.

• 52:31Speaker 01

  And again, this goes back to, in part, some of like the shared genetics that we see. So they're spot on. Yes, is the answer.

• 52:38Alie Ward?

  Wow. And Lily Hart also says that two people in their life with MS, one has had MS mistaken for Lyme. Are there triggers with other infections? Are we seeing more MS after massive amounts of infection from COVID? Or do you ever, yeah? It's a very- Yeah, you get it.

• 52:58Speaker 01

  No, no, it's a very hot topic. Right now, we feel rather confident that EBV, mono, as we were talking about earlier, is probably a prerequisite to developing multiple sclerosis. We can't find evidence right now of other infections doing that. It's an ongoing debate, and it's an ongoing area of research. For example, for a while, we were wondering whether chlamydia might be, you know, and that didn't pan out. In the COVID era, there's a lot of misinformation, as you're well aware, and I don't think that we found great evidence that COVID can cause multiple sclerosis. Although, when you have an infection, what happens? Your immune system revs up. When you get a vaccine, what happens?

• 53:42Speaker 01

  Your immune system revs up. And so it stands to reason that you might manifest an attack in someone who is gonna have MS. But it's a very gray area, and there's a lot of debate amongst MS neurologists, and there's a lot of misinformation floating around. It's a hot topic for sure.

• 54:00Alie Ward?

  And a 2020 study titled Vaccination in Multiple Sclerosis: Challenging Practices Review in the journal Experimental and Therapeutic Practices notes that vaccination is proven to be one of the most effective means to prevent infections, but is still surrounded by controversy in the general populations, as well as in the MS group. And vaccines are generally considered safe for MS patients, it reports. And the exceptions from this, which turn into contraindications, are a medical history of allergic reactions to one of the vaccine components, and immunosuppressed patients in the particular case of live vaccines. So there are several different types of vaccines, and live attenuated, rather

• 54:44Alie Ward?

  than inactive, or mRNA vaccines. The live attenuated do have live virus in them, though they're weakened, and they're not recommended for folks with MS. And those vaccines that have live attenuated virus could include measles, and mumps, and chickenpox, and yellow fever. But yeah, controversial, still, as are a lot of things that you put in your body, such as lunch. Now, patron Deborah Pekin asked, what do you say about a gluten-free or other diet which has been said to benefit MS? And this is also asked by... Allegra Favilla wanted to know if there is any scientific proof of any special diet helping MS. And my question really spawns from the bevy of pseudoscience and pseudo-health

• 55:25Alie Ward?

  advice that people with chronic illnesses like me are given every day, they say. And they've been told to change their diet, eat only meat, eat vegan, no nightshades, no sugar, and...

• 55:36Speaker 01

  More nightshades, more sugar, yeah.

• 55:37Alie Ward?

  Yeah.

• 55:38Speaker 01

  So the first comment that I'll make is, there's no diet which has been proven to slow multiple sclerosis.

• 55:45Alie Ward?

  Okay.

• 55:46Speaker 01

  So there's no diet that has been proven unequivocally to slow the disease. There are many proposed diets, and I believe firmly that a lot of these diets can improve fatigue, and they can improve some of the symptoms of multiple sclerosis. So I am a big believer that nutrition can impact disease course and disease severity. But I want to be clear that I don't think by itself that can, like, cure the condition. When I look at the data, you're right, that it's really confusing, because someone will say, whatever you do, don't drink milk. And someone else will be like, no, no, drink milk. And it leaves the human, like, not sure. There's a couple of things that I think are very relevant and I'll list them off really quickly, but honestly, like they're relevant for all people. So I don't think it's unique. Number one is upping your water game.

• 56:30Alie Ward?

  Okay.

• 56:30Speaker 01

  You know, many of us are dehydrated and a lot of MS symptoms are exacerbated by dehydration. Bowel and bladder is exacerbated, fatigue, cogfog. These are things that are really worsened when someone's dehydrated. Supplementing vitamin D, in my estimation, does help MS. And it looks like, at least when you have low levels of vitamin D, it's associated with worsening disease outcomes in MS. And it's an association, not a causal thing, but vitamin D is pretty cheap. And so, you know, if you can't go out half naked in the sun for 15 minutes a day, which in Ohio, you'd have frostbite in bad places, you know, oftentimes we supplement vitamin D. The next big thing that I really try to get families to embrace is avoiding processed foods and sugar laden foods, fried foods, fast foods.

• 57:13Speaker 01

  And I find time and time again, when people adopt like a healthy, natural food diet, they just feel better.

• 57:19Alie Ward?

  Unfortunately, yeah, folks, diet does have an effect on how we're feeling regardless of MS. And I'm speaking to a meme right now. And for more on this, you can see the 2019 study, "An Evidence-Based Look at the Effects of Diet on Health", which begins by saying that cardiovascular disease is the number one cause of death in the United States. And additionally, cancer and mood disorders both have significant impacts on morbidity and mortality. And what we eat, it says, "may allow us to powerfully intervene on these, the largest of health issues affecting our country." But these papers are often not as exciting in the headlines as like new research about pharma breakthroughs.

• 57:58Speaker 01

  So there isn't a lot of money to be made studying nutrition. There's no like drug company that's gonna, you know, fund a $700 million research into nutrition. And so the studies that are done in nutrition are normally like smaller and they're grassroots. And it makes it hard to study it. So, you know, there are some really good works out there, but they're all works in progress.

• 58:23Alie Ward?

  You mentioned how important dehydration is in terms of symptoms. But also, we know that the down there's and bladder can be really difficult. And Becky Grady says, I have MS. Is there any viable treatment for bladder control issues?

• 58:39Speaker 01

  Amen, yes.

• 58:40Alie Ward?

  Yeah, why is that a symptom to begin with? And how do you encourage patients to make sure that they are hydrated? When people without MS have a hard time hydrating because they have to pee.

• 58:50Speaker 01

  So again, you bring up some really fantastic points. So first, let's talk about why do we see bladder so frequently? There's certain parts of your brain that control bladder and those could be affected in MS. But more commonly, the spinal cord has a lot of control over bladder. And when the spinal cord gets beat up, you can have difficulties with bladder. And there's, there's actually different kinds of bladder problems. You can have a tight little racquetball bladder where half a Coca-Cola and you got to sprint to the bathroom and you can't make it in time. God forbid, that's called overactive bladder. And then there's another problem where the outflow tract, the urethra, is tight like a swizzle straw. And you can't push the urine through it and you have urinary retention. And then sometimes nature's too generous and you can actually have both.

• 59:31Speaker 02

  Seriously? Seriously.

• 59:33Speaker 01

  And so I would say that bladder problems are very common in MS. And it can make it so someone doesn't want to leave their house. Now, there's the devil's trick here because the normal thinking person would rashly say, okay, well, if I have a risk of peeing myself, I'm simply not going to drink fluids. And that's actually dead wrong. And the reason it's dead wrong is if you have blood, you will make urine. And if you're not drinking water, that urine is uber concentrated. And it's got a lot of metabolites and toxins, you know, from the blood. And that irritates the bladder wall. It's a bladder irritant. And if you have bacteria in the bladder and it's a really concentrated urine, that's a better place for bacteria to live.

• 1:00:14Speaker 01

  It's kind of like if you have like a cup of urine and you put it on the kitchen counter, left it there, it would grow a lot of bacteria. Now, if you're drinking water all the time, you're going to pee more, which continually flushes the bacteria out of your bladder. And it reduces the concentrations of the irritants. And so it's actually counterintuitive, but people fare much, much better when they're drinking more water.

• 1:00:37Alie Ward?

  Aha. You know, I wanted to ask this about biological sex and assigned sex at birth and rates of MS. And a few people, Catherine Lilly-Hart, Jacqueline Church, and Amanda Butler, who has been an MS patient of 15 years, wanted to know, is it true that MS is more common in women than men? If so, why? Catherine wanted to know, why is it more common in women but more deadly in men? Or is that flim-flam? And Amanda, an MS patient, says, where is research at for pregnancy hormones and MS? They don't plan to have kids, but if we can use whatever helps get pregnant people's symptoms to remit, they're all in. So where are hormones in all this?

• 1:01:18Speaker 01

  This is a really, really great topic. And for starters, MS is super complex. And it's not just the interplay of the immune system and the nervous system. And hormones play a massive role in disease. I want to give a shout out to Riley Bouvet, who's a friend of mine at UCSF, who's done a lot of research in this area. And a lot of the answers I'm providing right now come from some of her work. So it's true that the onset of MS is three times more common in women than men. And I'll tell you something really disturbing. From the 60s to now, or the last several decades, the incidence of MS has been steadily climbing, but only in women, not in men. And we don't know why. And we're not exactly sure that it's related to hormones. I know that sounds like goofy pants. But

• 1:02:03Speaker 01

  yes, there's this sexual dimorphism where women are more likely to develop most autoimmune conditions compared to men.

• 1:02:10Alie Ward?

  Yeah.

• 1:02:11Speaker 01

  But if you are a man with MS, it is true that you have a faster disease course until about 50. So let's unpack that.

• 1:02:20Alie Ward?

  Okay.

• 1:02:20Speaker 01

  So it looks like estrogen has some protective effects in MS. And a good example of that is what we see during pregnancy. So when a woman is pregnant, the placenta makes insanely high levels of esterol, which is an estrogen, particularly in the second and third trimesters. And what we see clinically is that MS is really, really quiet typically during the second and third trimesters. And if you take it a step further, anytime a woman has a change in hormone levels, like even during the monthly menstrual cycle, you can see an uptick of disease activity. Well, most women enter perimenopause around age 45 and estrogen levels start to fall at

• 1:03:02Speaker 01

  40. And so when the protective estrogen levels are now falling down, the rates that women in their 50s progress is the same as with men.

• 1:03:13Alie Ward?

  Oh.

• 1:03:14Speaker 01

  And so that's freaky deaky. What I find is hormone replacement therapy tends to help with a lot of symptoms.

• 1:03:20Alie Ward?

  Huh.

• 1:03:20Speaker 01

  And it looks like it might help slow some things down in MS. And so I think this topic in particular is underappreciated even amongst MS neurologists and needs to be looked at a lot more.

• 1:03:31Alie Ward?

  Yeah. And we did an episode on ADHD and why so many women and people assigned female at birth who go through perimenopause suddenly have these acute ADHD symptoms because without a lot of estrogen, you don't have the molecules you need

• 1:03:46Speaker 01

  Yes.

• 1:03:46Alie Ward?

  to go through executive function. And so you're just like, why am I can't? So yeah, I think that that's all so super interesting.

• 1:03:53Speaker 01

  Yeah, I agree.

• 1:03:54Alie Ward?

  And Jess Lynn and Lisa Nahuyes had great questions about research. Well, Jess's question was, there's been some research looking into the gut-brain axis and MS.

• 1:04:04Speaker 01

  Yes.

• 1:04:05Alie Ward?

  Do you think it could be possible to use a gut microbiome as a non-invasive early detection method? What's the research on that right now?

• 1:04:14Speaker 01

  I love this question. And it's an area that I'm particularly interested in. So just to level set real quick, there's a bunch of microbes that live inside of us. We probably have as many microbial cells in us as we do like human Eukaryote cells. And the vast majority of those bacteria live in our gut, particularly in the colon. It's populated with these colonies of bacteria and that's referred to as the microbiome. Now, interestingly, for reasons that we don't understand, many people with autoimmune diseases, including people with MS, have something called dysbiosis, which is a doctor term for you got jacked up microbes, you know, your gut bacteria is goofy and you don't have the right kind of gut bacteria. And

• 1:04:55Speaker 01

  There's a growing understanding that the microbiome interacts with your immune system for real. And so there's some really exciting research looking at trying to manipulate the microbiome with the goal of trying to help the immunity. Now, this is very, very fledgling. And I'm not saying like for a limited time only, if you take probiotics, it'll slow your MS. That's not what I'm saying. But the data is really encouraging. And there's actually studies ongoing, looking at fecal transplants.

• 1:05:25Alie Ward?

  Love it. Can't wait for those. My husband with IBS, I'm like, seriously? It's harder, it's harder to get your poo accepted at a bank for that than it is to get into Harvard. It is, you have to have better poo than a brain to get into Harvard.

• 1:05:40Speaker 01

  Yep, yep, you're right. And you know, I routinely recommend probiotics for my patients for gut health. You know, so I find that my patients that take probiotics and take prebiotic fiber, they have better regulation of their bowels, they have less diarrhea, they have less constipation, they have better gut motility, et cetera, et cetera. But the research looking at the potential to actually impact the immune response is super interesting. And it's certainly not primetime. It's a long way off, but I do think that there's a relationship there. I absolutely do.

• 1:06:10Alie Ward?

  Now, a 2021 study called Combination of Probiotics and Natural Compounds to Treat Multiple Sclerosis Via Warburg Effect, published in the Advances Pharmaceutical Bulletin, states that the Warburg Effect, which is a glycolysis action involved with the demyelination mechanism, it intensifies the activation of immune cells in the central nervous system, and it provokes the inflammation process of the myelin sheath. And the infiltration of a bunch of immune cells rushing in can be inhibited by the therapy of probiotics and prebiotics. And in this review, they recommend that the idea of that combinational therapy can do miracles in the treatment of MS in the future.

• 1:06:54Speaker 01

  Actually said that?

• 1:06:55Alie Ward?

  Miracles, it's a strong word, calm down, but it's promising, yes. And it continues it lactobacillus, bifidobacterium, and streptococcus in MS patients.

• 1:07:05Alie Ward?

  Which is their gut microbiota to modulate that anti-inflammatory immune response. But it does concede that more research is needed. Now, one of the best ways to boost the microbiome, we asked an expert, is a healthy diet with lots of whole foods and veggies. We have a whole episode on the gut biome that we'll link for you. But the TLDR is that your brain and your simmering intestines are good friends. Now, a few of you had questions about neuroanatomy. And Jean Comstock, first time question asker, and Carly V wanted to know, in Jean's words, I usually read that demyelination from MS occurs primarily or only in the CNS. How often do we see the myelin sheath damage in the peripheral?

• 1:07:50Alie Ward?

  What's eating that myelin? And is there any way to just get it back?

• 1:07:54Speaker 01

  So this is a great series of questions. So just a little bit of like neuroanatomy type stuff. We have different cells that provide myelin in the central compartment compared to in the periphery. So in the central compartment, we myelinate the central nervous system nerves with oligodendrocytes. And in the peripheral nervous system, we don't use oligodendrocytes. We use these Schwann cells, these other cells. And the demyelination and axonal damage that you see in the setting of multiple sclerosis is limited to the central nervous system, so brain spinal cord optic nerves. There are different autoimmune conditions like Guillain-Barre or AIDP/CIDP, which can cause demyelination of the peripheral nerves.

• 1:08:40Speaker 01

  And what's interesting is, even though they sound rather similar in neurology, when we subdivide into like our little areas, it's on the other side of the nervous system. So the guys and gals that manage autoimmune peripheral demyelination and I, we never talk. And you can use an immunosuppressant to treat any autoimmune condition because you can dampen the immune response. But when you get into the details in some of the more like targeted therapies, they're rather specific for multiple sclerosis. Now, the question of like, why? Well, the thought is, and there's actually a really cool study that I recently looked at. When you develop EBV mono and you make an antibody which binds to one of the proteins on mono.

• 1:09:24Speaker 01

  That same antibody identifies one of the proteins on oligodendocyte myelin.

• 1:09:30Alie Ward?

  Aha.

• 1:09:31Speaker 01

  And so that's that cross reactivity that we were talking about. So it's, it's rather specific, we believe. Now, you also touched on arguably one of the holy grails of MS therapies, which is remyelination.

• 1:09:43Alie Ward?

  Yes.

• 1:09:43Speaker 01

  So demyelination is when you strip the plastic coating off the wire. Remyelination is when you would put it back on.

• 1:09:50Alie Ward?

  Yeah.

• 1:09:50Speaker 01

  And I hypothesized that there's three kinds of therapies that we need to cure MS. The first is a remyelinating agent, and we don't have one yet. We've been working on it. We have failed multiple times in trying to develop a remyelinating agent. We've had some close ones where we were really excited and then fell on our noses. Yeah. So anti lingo. Yep. And it didn't work out.

• 1:10:13Alie Ward?

  So Erin explained to me that this was the 2020 trials of an antibody treatment called Anti-Lingo 1, which inhibited lingo, leading to myelin repair and test animals with a condition similar to MS. But unfortunately, it was not successful in further trials. But right now, this very moment, we're sitting here, listening to this, maybe we're washing dishes, washing the car, maybe we're petting a goat, and scientists are shown up for work. They're walking in a building with a thermos full of coffee. They're making notes over a sandwich. At lunch, they're applying for grants after the kids go to bed, trying to figure out how to get that myelin back around the neurons of folks with MS.

• 1:10:52Speaker 01

  The second thing that we need is a neuroprotective agent. And unfortunately, we really don't have that yet. The third thing that we need, and we have in spades, is specific antiinflammatories. And I don't mean antiinflammatory like an aspirin. I mean central nervous system antiinflammatories, like you mentioned, B-cell depleters like Ocrivis, Oclizumab. So this is a huge area of interest in MS research, and in specific in like MS therapeutics. We're not really working so much anymore on like the next antiinflammatory, because we have those. A lot of the efforts are instead being placed on some of these other areas, which is appropriate and really, really exciting.

• 1:11:30Alie Ward?

  What about? We've seen, like in Selma Blair's case, she was public about going through essentially like a chemo to destroy her immune system and build it back up.

• 1:11:39Speaker 01

  Yep.

• 1:11:47Alie Ward?

  Are we seeing any success with that? It doesn't seem like it was a cure-all, a magic cure-all, but how much research is going on in that?

• 1:11:55Speaker 01

  This is a very important topic. And so what you're talking about is a stem cell transplant. And so we talk about an autologous hematopoietic stem cell transplant, and it's a very sexy concept. I'm going to swap out my bone marrow and then I won't have an autoimmune condition. So a couple of things. Number one, it's not a drug, it's a procedure. Number two, it's a very morbid procedure. It's a draconian maneuver where you, you take the person and you make them make stem cells and you put them on ice. Then you murder them. You give them lethal doses of chemotherapy and you remove their immune system, like John Travolta Boy in the Bubble, where they have no immune system and they would succumb to a cold. But before they die, God forbid, you give them back the immune system, the, the stem cells.

• 1:12:39Speaker 01

  Now, what's interesting is the stem cells don't help the MS. The stem cells prevent you from dying. The ablation of the immune system is what helps the MS. And this has been studied increasingly. There's huge efforts, gigantic efforts in Italy, gigantic efforts in Canada. There's ongoing studies in the United States looking at stem cell transplantation, mostly targeting really severe cases of multiple sclerosis. And it's not prime time, in my opinion. When I look at some of the most effective medicines to treat MS, they, in some studies, fare as well as stem cell transplantation, sometimes maybe a little less, but the safety profiles are much better.

• 1:13:20Speaker 01

  And so I don't feel like the answer to MS is stem cell transplantation. I'll also point out two more things, that when someone gets a stem cell transplant, it accelerates the brain shrinkage, the brain atrophy, because of the intense chemo. And if you follow these people out, it's not like you cured their MS. They can still go on and have progression some years later. So it's not a cure all and I have received patients that have participated in stem cell tourism, something that I don't recommend, where they go to like an exotic place like Mexico or India or Chicago and they get their bone marrow swapped out. And I can tell you that for some of the patients, it's been really, really transformative. And many of the patients, they've gone on to have disease activity and we've gone back on medicines.

• 1:14:03Alie Ward?

  And now in the four or so years since Selma Blair's transplant of her own cells, she has said that she has experienced a relapse and then went on a medication called Mavenclad for relapsing remitting MS as well as some twice monthly immunoglobulin transfusions. So some neurologists caution not to hang too much hope on her very public experience as what she calls a remission in her symptoms could be due to a variety of therapeutic factors. And the so-called rebooting of the immune system via chemo and the transplant is described as a grueling process with no guarantees.

• 1:14:42Speaker 01

  So it's, it's a very hot topic and I would simply ask someone listening, if you're going to consider a stem cell transplant, you need to be talking to a legit MS neurologist. And it's not just something where you book a trip to India, get it done and come back.

• 1:14:56Alie Ward?

  Yeah, right. And in therapies to help manage symptoms, Jean Kelly wanted to broach the topic of ganja. They had a friend who used marijuana medically for her MS and said it helped relieve a lot of her symptoms day to day, more than any medication she'd been prescribed. Has there been any research into treating MS with marijuana? If so, is it supported? Does it work? Do we know why it works?

• 1:15:21Speaker 01

  Excellent, excellent topic. And I don't think that we could possibly have a discussion about MS in the modern era without talking about weed. It's like literally impossible. And so, you know, it's shocking that this late in the discussion, because it always comes out, right? So to share with you like my little journey, I'm a medical marijuana recommender in the state of Ohio. In Ohio, we don't have recreational cannabis available, but we do have it through certain medical conditions. Top would be MS. And so when this first started to pick up, this concept of using cannabis medically approved, I looked at the data and I immediately decided this is BS because the data is really, really poor. Like the quality of the research is crap. And I'm a nerd and I said, okay, well, you know, I don't, I don't

• 1:16:03Speaker 01

  ascribe to this. And so at first I said, no. Then something really weird happened. I had a dear patient of mine in her seventies who is a teetotaler who said in confidence, "Dr. B, my grandson, he gave me a doobie and if I smoke the doobie, I don't need your medicine. I don't have spasticity." And I thought, "That's weird." And then I had another like seventy something tell me the exact same thing. And so, over several months, they all happened to be like older women were confiding in me that they were sleeping better through the night, they weren't having spasticity, they weren't having pain, all because they were using cannabis. And so, I went back to the literature and I looked at it again and it hadn't gotten any better. Right? But I decided that I would believe my patients because I don't think they all got into like

• 1:16:48Speaker 01

  a sewing circle and said, "Let's all lie to Aaron and tell him all the same lie." Right? So, I went through the process of becoming a medical marijuana recommender and now I've been recommending for several years. And I feel very strongly, a couple of things. Number one, it doesn't slow down MS. So, I'm not recommending that you use cannabis instead of disease modification. But as you pointed out, as it relates to symptoms, there are certain symptoms that are very well-treated by cannabis. For example, spasticity in MS, which is very common in MS, is probably one of the most robust symptoms that have been studied and works very well. So, you can use cannabinoids to help with spasticity, neuropathic pain. How do they work? Are they anti-inflammatory? What are they doing in there?

• 1:17:32Speaker 01

  So, we don't know. I mean, I can tell you like the party line about CB1 receptors and CB2 receptors, but, but we don't really know, to be honest. And, and the studies that were done are crappy quality studies. I mean, when you look at them, you're like, "Really? Did high school kids come up with this?" But what I can say is, in clinic, it works. I mean, I see it work like routinely. Neuropathic pain, it works. Insomnia, it works. Anxiety, it works. And one of my favorites is, one of my dear patients tells me, his favorite use of cannabis is for irritable situations. And I said, "Well, what do you mean?" I thought he meant like in-laws. That's not what he meant. And he gave an example. The guy's a cyclist. Now, he's blind, but he gets on a stationary bike, like a Peloton. He'll do it for hours. But he had a problem because when he would do it for a while,

• 1:18:17Speaker 01

  his left leg would literally start burning and he would have to stop because it hurt. What he found was, if he uses cannabis before he rides, it still burns. He just doesn't care. And I said, wait a second. So you mean it makes the pain better? He said, absolutely not. It does not make the pain better. I just don't care about the pain.

• 1:18:34Alie Ward?

  Oh, wow.

• 1:18:35Speaker 01

  Now cannabis does not cannabis does not help with cognition. It does not help with fatigue, in my experience. It does not help with bladder. It does not help with balance. And like any chemical, there's a side effect profile that you don't want to ignore. But I have found that it's a really great tool for a lot of patients for a lot of different things.

• 1:18:54Alie Ward?

  Please enjoy the 2022 paper in the journal Life titled "The Efficacy of Cannabis on Multiple Sclerosis-Related Symptoms," which reports that oral cannabis is mainly used for treating patients with MS and has positive effects on treating the most common symptoms of MS, such as pain and spasticity. And the International Journal of MS Care published the study "Multiple Sclerosis and Use of Medical Cannabis: A Retrospective Review of a Neurology Outpatient Population," which stated that patients experienced extensive MS symptom improvement after initiation of medical cannabis, with alleviation of pain

• 1:19:33Alie Ward?

  reported by 72% of patients, and spasticity reduction by 48% of patients, and improvement in sleep in 40% of patients. So Mom, are you listening? Perhaps we'll get you some. Now, which is better for pain, the CBD or the THC and marijuana? Researchers seem to agree that THC has a larger effect on pain reception, and CBD, which is the non-psychoactive compound, can help pain at the source. There was one 2024 study titled "Cannabinol and Brain Function: Current Knowledge and Future Perspectives" in the Journal of Frontiers and Pharmacology, and it reported that the endocannabinoid system in our bodies controls

• 1:20:16Alie Ward?

  most bodily functions, including sleep, temperature, pain reception, inflammatory and immune responses, learning in memory, processing emotions, and eating, making it the subject of most drug development research. And the study stated that although the molecular pathways and mechanisms through which CBD acts have not been fully established Yet they don't totally know what's going on. It's suggested that CBD from marijuana can directly interact with different receptor dependent and independent mechanisms, which contribute to different therapeutic applications. So don't know how it works, but it works and your doctor probably knows that. So go ahead and ask.

• 1:21:01Alie Ward?

  And now that you can go to a dispensary and look at a display case and say I'd like 2.5 milligrams of cannabinoids versus this much THC. Like, what kind of dosages are you seeing patients using?

• 1:21:14Speaker 01

  So what I tell people is you need three things to start. The most important thing is a notebook and a pen because the way that your body responds is going to be different than your neighbor or your twin or someone else with MS. The second thing is I typically ask people to pick up two of three things. A tin of gummies, which is an edible. And here in the great state of Ohio, they're all 10 milligram gummies. That's the way they come. And then either a vape pen or a tincture. So I don't recommend lighting cannabis on fire and smoking and sucking in the smoke because it's super pro-inflammatory like tobacco's pro-inflammatory. But vaping, you're heating it up below the level of combustion. And whereas it's probably still a little bit pro-inflammatory, I think a lot less.

• 1:21:58Speaker 01

  And the advantage of vaping is it's a very, very fast onset. So if you have a charley horse that's dropped you to your knees, eating an edible and waiting 45 minutes isn't going to work. You can hit a vape pen and it can work within minutes.

• 1:22:10Alie Ward?

  Oh, got it. Okay.

• 1:22:11Speaker 01

  Now, I have some patients that would never, ever want to breathe in anything, even vapor. And so tincture, which is an old apothecary term, you have a bottle of liquid cannabis and you draw it up into a dropper and you put it under your tongue. And there's these giant blood vessels. So about 15 to 25% gets absorbed very quickly into the bloodstream and it will work almost as fast as a vape pen. And then you swallow the rest of it and the rest of it kicks in just like an edible in about 45 minutes to an hour. Now, the edibles, I typically ask people, particularly people that are maybe virginal and that, you know, they haven't had a great time in college or whatnot. You, you take the edible and you cut it in half, so you've got five milligrams. And I tell them, you know, towards the end of their, after dinner, take an edible and then just do your normal routine.

• 1:22:55Speaker 01

  Don't sit around like scared looking in the mirror to see if you grow horns. You know, do your thing and don't re-dose, right? That's very important. And what I want to find out is, when did it kick in? When did it peak? When did it go away? What were the benefits and side effects? And if you can answer those questions, I can help you dial it in like in the other medicine. And if five milligrams doesn't work, you don't want to be like a, a 20-year-old boy and then take another five and another 10, you know, and pretty soon you're going to have a really bad evening. Yeah. And so you keep notes and over a couple of days, we can figure it out. So we use edibles to help with insomnia, to improve sleep, to help pain and spasticity overnight, and a low dose during the day can help with anxiety.

• 1:23:36Speaker 01

  And so we can use different routes of administration of cannabinoids to really target symptoms. The same way that we do with Lyrica or Norontin or Baclofen. I mean, these drugs that I just listed, they have side effects and they have tolerance and other things that are also important to grapple with. And so I just view this as another tool to help us navigate through, you know, helping someone live their best life. I'll tell you a quick funny story, though. Years ago, before there was medical cannabis in the United States, I was at an international MS meeting and a bunch of investigators, we were all having coffee or whatnot, and I was talking to this MS doctor from Israel. And he said, "In Israel, we give patients with MS rolled joints for free." And I said, "Really?

• 1:24:21Speaker 01

  Why?" And he looked at me like I was an idiot and he said, "What do you mean, why? Because it sucks to have MS and that makes them feel better." And honestly, I really couldn't argue with him, you know? Like, I was like, "Okay." And I have some patients, this one young man, he was adorable. He said, "Dr. B, can I be honest with you? I just like to get high." I said, "Okay, thanks for being honest." You know, I mean, okay. It was really funny.

• 1:24:43Alie Ward?

  Do you have any advice in general for people who have autoimmune disease or anything that you feel like you wish, if you could get on a soapbox, you wish people with autoimmune conditions knew or something they could do to feel better or things that they could ask their doctors?

• 1:25:00Speaker 01

  Yeah, I think there are two things that I would bring to the forefront. Number one is you need to cultivate a sense of self advocacy and you need to be selfish. And so you live one time, you have one central nervous system and it's your life, it's your brain. And just because the doctor's not bothered by it, doesn't make it okay. And so, you know, we all need advocates and the best advocate to cultivate in medicine is a self advocacy. So we have to fight against, you know, medical gaslighting and we have to fight against therapeutic inertia. And I need people to be selfish and say, I'm not gonna minimize my symptoms and hide them because I want to, I don't want to appear like a bad, like you gotta come in there and be like, look, man, I can't get an erection.

• 1:25:43Speaker 01

  It's not okay. You know, like I took your Viagra, it doesn't work. What else you got? I mean, that's an example. You want to be a self advocate and I really think that's very, very important. Another thing that I think can't be appreciated enough, and this is a ubiquitous comment for anyone with an autoimmune condition, is the critical importance of a healthy lifestyle. And so adhering to a healthy diet, exercising is part of your lifestyle, not smoking stuff, participating in daily mindfulness, these are things that would help anyone. And they particularly are helpful, I think, in the setting of autoimmunity. And unfortunately, there's a cadre of patients that they just want a pill for the ill and that's all they want to do. And it's really a fool of a doctor

• 1:26:25Speaker 01

  who thinks that they can make a chronic problem like an autoimmune condition better just with the medicine.

• 1:26:31Alie Ward?

  And we also have a Dolorology episode with Dr. Rachel Zoffnis, which is all about factors that affect how we perceive pain levels from the biological to the psycho and the social causes of how we perceive pain. And we're going to link it in the show notes along with another great episode with Jules Hots called Salutinology about why human beings need each other and leisure activities for the health of their brains and bodies. They're both fascinating episodes.

• 1:26:57Speaker 01

  And so I think if we're going to try to live our very best lives despite any autoimmune condition, we have to approach it from a holistic standpoint. I want people to be very demanding. These are the symptoms that bother me. And doctor, if you can't help me, send me to someone who can. And you know, if you're drinking to excess and smoking a half pack of cigarettes, and you're complaining that your neuropathic pain isn't responding, I think that we have to look at all options, including some of your behaviors. So those will be the two things that I really think are important.

• 1:27:26Alie Ward?

  And did you, I know that you mentioned mindfulness is one of the five. Do you want to list those out so that we have them kind of in a condensed version?

• 1:27:33Speaker 01

  Sure, yeah, for sure. So, you know, I will tell people that I want them to be five for five and they're fighting against MS. And it's because there's five things that I'm aware of that slow the disease down and can improve outcomes. So number one is to exercise as part of your lifestyle. And I want to point out that when I say part of your lifestyle, what that means to me is you don't get a reward when you do it. And you're not punished when you don't do it. So for example, I have a lifestyle of showering. I don't tweet out about it like, oh my God, I took a shower. Like, that's not a thing, right? And if I didn't have a chance to shower in the morning, I just do it later, right? And I need people to embrace exercise like that as part of their lifestyle.

• 1:28:08Alie Ward?

  That's so smart because there's so many of us who are like, oh, I have to do exercise as a punishment for eating a brownie. Or I can only exercise when I make sure I take care of everyone else in the house and everything on my to do list is done, then I can take some time to go for a walk.

• 1:28:22Speaker 01

  You know, exactly, exactly. And this needs to be part of what you do, right? So the second thing is to eat smart. In the setting of MS, that starts with vitamin D supplementation and water, but it's, it becomes a really large conversation. You know, we get into the amount of protein you need to eat and the amount of fiber. And, you know, it becomes a big conversation, but I think we want to start and meet someone where they are. And sometimes that just means stop snacking, right? And stop eating like sugary treats. So eating smart is one of those five things.

• 1:28:47Alie Ward?

  Yeah.

• 1:28:48Speaker 01

  The third thing is to not smoke stuff. And as I mentioned, if you smoke, you double your risk to develop MS. And if you have MS, you can speed it up by 50%. And so not smoking is one of the biggest impactful things you can do to slow the disease down. Now, behind that is a really big conversation about other cardiovascular risk factors, but not smoking stuff is one of them. And I say smoking stuff because I think smoking cannabis is, for very similar reasons, not so good for you because of the pro-inflammatory nature of like sucking in carbon-based smoke. Now, number four is the daily practice of mindfulness. And There's so many different ways to be mindful and we just need to find one that doesn't suck. And we need to just try to practice doing it. So, you know, I shared with you that I have a lifestyle of showering.

• 1:29:31Speaker 01

  In the pandemic, I added something. When I'm done showering, I sit in the shower, cross my legs, I close my eyes and I just breathe. And at first I sucked at it, like I would be like, Boston, get up. What are you doing? And I learned to just let all the thoughts go and I'll spend five minutes, 10 minutes just breathing and it's transformative. It's the, one of the best parts of my day, believe it or not. Now, the fifth thing is to take the most effective DMT possible and make sure it's working. And I want to refer, the most effective DMT that you're comfortable taking and make sure it's working.

• 1:30:01Alie Ward?

  And what's, what exactly is the DMT?

• 1:30:04Speaker 01

  It's a disease modifying therapy.

• 1:30:06Alie Ward?

  Got it. I thought you meant like this stuff where you see little shiny aliens, like you smoke it on the beach.

• 1:30:10Speaker 01

  Oh, my bad. You're like, oh, Aaron, that's a variant. No, so.

• 1:30:14Alie Ward?

  I was like, holy shit, really?

• 1:30:16Speaker 01

  Yeah. No, what I mean is I want you on the most effective disease modifying therapy that you're comfortable taking.

• 1:30:21Alie Ward?

  Okay.

• 1:30:22Speaker 01

  And I want to make sure that it's working.

• 1:30:24Alie Ward?

  So we have a psychedelics episode all about the therapeutic effects of hallucinogens with a highly respected researcher, Dr. Charles Grobe of UCLA. But DMT, AKA dimethyltryptamine, occurs naturally in plants and animals, including you. And taking it can produce a short hallucinogenic experience. And this famed author and ethnobotanist and psychedelics advocate, Terrence McKenna, described these commonly seen benevolent beings that come chill out on a DMT trip as, quote, "self-transforming machine elves." Apparently a lot of people see him. I have not done it. Now, when Aaron mentioned staying faithful to your DMT, I was like, I'm sorry, pardon.

• 1:31:07Alie Ward?

  But it turns out that he meant disease modifying therapies, like checkups and medicines. Now, one new DMT that has emerged since this recording, well, I'm just going to let Aaron tell you via this voice note.

• 1:31:20Speaker 01

  There are a couple of things going on right now in the MS space, which really have me jazzed. Amongst the biggest are some of the developments in the brutine tyrosine kinase or BTK inhibitor space. We studied one BTK inhibitor called tulibrutinib in a non-relapsing secondary progressive MS trial called the Hercules trial. And I'm very proud that at the Boston Center, we enrolled a bunch of patients into this trial. And what's exciting is that it was a very successful result. Compared to placebo, the patients on the BTK inhibitor slowed progression by 29%, which is a really big deal. This medication has been fast-tracked at the American FDA, and we believe that probably come September

• 1:32:03Speaker 01

  timeframe, we may have the first FDA-approved therapy for non-relapsing secondary progressive MS. What's even more exciting is that the same molecule, the tulibrutinib molecule, is being studied in primary progressive MS in a clinical trial called the Perseus trial. Now, we should be getting a readout for Perseus sometime later this year, and our fingers are crossed.

• 1:32:24Alie Ward?

  I'll cross my fingers for it. And what about, you know, you've been studying this for a long time. You've wanted to do this since you were 12. And Kayla C., Lisa, who has wanted to know, in Lisa's words, how close is research getting to a cure? Or what are the next steps taken to get there? How encouraged are you? How crestfallen are you?

• 1:32:43Speaker 01

  My honest answer is, I don't think that we're going to see a cure in my lifetime.

• 1:32:48Alie Ward?

  Yeah.

• 1:32:49Speaker 01

  And I'm not saying that to be a Debbie Downer. The reason I say that is, our understanding of the immune system remains fledgling. We, for example, are just now starting to be able to impact the innate immune response, which is bigger than the adaptive immune response. So, most of our drugs that we've developed affect B and T cells.

• 1:33:08Alie Ward?

  A B and T cell, side note, I had never heard of this. Turns out, it's medical lingo for B cells and T cells, which are both lymphocytes and major players in your immune system.

• 1:33:18Speaker 01

  There's another part of our immune system which is way bigger than that, and we're just now studying drugs that can get at it. And so I think, given our meager understanding of the immune system, which is really kind of one of the last frontiers, I think it's unrealistic that we're gonna cure MS in the near term. Now, I want to be really clear that in medicine, we cure nearly nothing. So, we don't cure high blood pressure, we treat high blood pressure. You know, so I have high cholesterol, thanks mom and dad, and I take a medicine to lower my cholesterol. It's not cured. If I stop the medicine, my cholesterol goes up and therefore my risk of heart attack and stroke goes up. But we can treat high cholesterol. And in the modern era, as we talk today, we can make MS boring.

• 1:34:04Speaker 01

  And that's a big deal. You know, if I use a different autoimmune disease as an example, diabetes used to be a death sentence. So, pre-insulin, if someone had type 1 diabetes, they would die because their kidneys would fail after 30 some years. Nowadays, you don't know that your girlfriend has diabetes unless you eat cake with her and she happens to get out her little insulin pen and inject herself. So, what are you doing? So, "Oh, I'm giving myself insulin." And so, that doesn't make it easy to have diabetes. It's actually very hard. But, we can make diabetes boring. And with the earliest applications of highly effective medicines, with attention to some of the stuff we've been talking about, we can sometimes make MS really boring. And I'm very proud of that. And I think that, I expect that over the next 10, 20 years, it's gonna get more and more boring.

• 1:34:49Speaker 01

  Where someone can live their life and then MS doesn't get to pick what happens.

• 1:34:53Alie Ward?

  Something, obviously, a lot about your job probably sucks, but I always ask this at the end, what's the hardest part about your job? What sucks?

• 1:35:03Speaker 01

  So, the only way that I know how to do this is to walk with the family. And I've learned that I have to grieve losses with someone. And, you know, losing your ability to wear high heel shoes is a loss. You know, this is a disease that sometimes we can wrangle to the ground, but we can't cure it. And it can progress. And so, whereas I grieve losses and I celebrate successes, they're typically time locked. And so... Sometimes the disease can get away from us and I watch someone who I have grown to love get worse and that hurts. You know, sometimes I do a really good job and we get

• 1:35:45Speaker 01

  lucky and we make the disease boring. Sometimes MS laughs at me and thinks I'm a joke. And watching a young person develop chronic condition is a really hard thing. It's a really, really hard thing to experience. And so that's really hard. That's a tough thing. But that's the only way I know how to do it is, you know, I cry a lot in clinic with patients. And I think that's fair because the stuff they're dealing with sucks and it makes you want to cry.

• 1:36:11Alie Ward?

  What advice do you give someone who's newly diagnosed who has questions about, Will, is this going to kill me and how much longer do I have?

• 1:36:18Speaker 01

  So in the modern era, with the earliest application of these medicines, we can expect a normal life expectancy. And if we play our cards right, a darn near normal life quality. So I want you to have more sex, climb more mountains. I want you to work harder. I want you to have more kids. I want all the things. And I don't want MS to make decisions for you.

• 1:36:39Alie Ward?

  How about accommodations that people might need? Any, any advice on how to advocate for yourself if you do need accommodations?

• 1:36:46Speaker 01

  So I think one of the things that we have to do is we have to think about what's the goal. So I'll give you an example. The goal is not to park at the back of Walmart and walk the whole store. The goal is to obtain groceries. And so if you identify the goal as obtain groceries, I care not as much about how you get the groceries. And so if you are having an awesome sauce day and you can park in the back of the parking lot and do all the things and do all the walking, good job. But if today's the day that you can't do that, have someone drop you off at the front. Take a cart. Or if it's really not physically possible to do that, then order groceries and have them delivered to your house. Because in this example, the goal is to obtain groceries.

• 1:37:29Alie Ward?

  And ask someone with MS, such as Fancy Nancy, about bright fluorescent lights in big stores and just the hurricane of sounds and people and stimuli. And it's way easier to understand why grocery delivery can be a medical need. And I wandered into one forum for folks with MS and I saw the comment, hell will be lit with fluorescent lights. And some folks there even recommended pink or amber tinted sunglasses indoors or looking for ones labeled for migraine sufferers. So you can look cool and you can feel better. Win-win.

• 1:38:03Speaker 01

  And so, you know, the workplace, one of the things that I think we do a very poor job of in the United States is vocational adaptations and accommodations. And I think the Family Medical Leave Act is a really, really important piece of legislation. And I think most families impacted by MS benefit from signing up if they qualify for FMLA. And one of the things that's not always appreciated about FMLA is it's not just about missing work to go to a doctor's appointment, it's about demanding accommodations. So I have patients, for example, that will work in a factory where they're at a machine and they're doing a task. And if I can write an accommodation where they can sit, they can keep doing it. Now, they can't do it standing any longer, but they can do it just fine if they're sitting.

• 1:38:47Speaker 01

  Or something as simple as a teacher who has classrooms where they have to go up and down flights of stairs, not the best of ideas. The goal is not to teach on multiple levels of the school, the goal is to teach. And so, writing an accommodation and saying, "Look, like, keep them on the first floor, gosh darn it." Those kind of accommodations can allow someone to be successful. And it's been my experience that people impacted by MS who have to leave the workforce or can't be involved in school anymore, they don't fare as well. And I think just psychologically, they have a lot more time to like, think about the disease. If you're proverbially flipping burgers for eight hours, you really have to concentrate on flipping burgers or you'll burn yourself. And that's a mindful activity, and I think that's healthy.

• 1:39:30Speaker 01

  And so, I think searching out accommodations, and again, going back to self-advocacy and being selfish, is paramount to success.

• 1:39:38Alie Ward?

  Now, what about, because I know that you're so passionate about your work, obviously, but what do you love? What keeps you going? Like, what's your favorite part of your job?

• 1:39:47Speaker 01

  I help people by request. So by request. So, for example, if I said, "Hey, stop smoking," you'll show me your middle finger. But if I say, "If you want to smoke, smoke, but I just need to educate you that smoking speeds up MS." And so, I really believe that education is paramount to success in multiple sclerosis. You know, the reason that I'm so passionate about my YouTube channel is it's just a tool for educating. Where if I have something that I want to convey, I can try to create a, um, an easily digestible snippet that then somebody can watch at their leisure. And so in, in my background, I grew up where we would talk about having a mitzvah, you know, a mitzvah is a good deed. Like if you walk an old lady across the street, then you're a good boy and you did a mitzvah.

• 1:40:32Alie Ward?

  Mm hmm.

• 1:40:33Speaker 01

  And so when I make a YouTube video and then later I find out that someone in another part of the world, they watched it and they benefited from it, that fills my bucket. I mean, it's, it's such a joyous moment for me. My family didn't have that. And so to be able to offer that to someone who is maybe in New Zealand, you know, that just, it means the world to me. And so when I can help someone in my clinic, or when I can help someone through, even through social media, it means a lot to me as a human being. And that drives me to keep doing what I'm doing.

• 1:41:05Alie Ward?

  Mm hmm. I'm sure your family's so proud. They must. Just what a mensch.

• 1:41:10Speaker 01

  Thanks. I'll tell my mom you said that.

• 1:41:16Alie Ward?

  So ask passionate people some impassioned questions and then you can pass on the knowledge. And you can enjoy way more of Dr. Boster on his YouTube channel, Aaron Boster, M.D., which we'll link in the show notes alongside his charity of choice, alongside his charity of choice, which is MS Views and News. And there are many more links to studies and resources that we posted at aliward.com/ologies/neuropathoimmunology, which we will link in the show notes. So you don't have to write that down while you're driving or sculpting, whatever you are doing. Now, we are at Ologies on Instagram and Blue Sky. We also have shorter, kid-friendly episodes called Smologies, S-M-O-L-O-G-I-E-S. And you can subscribe to

• 1:41:56Alie Ward?

  those as your summer road trips turn into some autumn car pools, or I guess the opposite for all of our friends on the other side of the equator. Smologies are linked in the show notes. They're available for free wherever you get podcasts. We have Ologies merch at ologiesmerch.com. T-shirts, sweatshirts, totes, mugs await you. Thank you to Aaron Talbert for adminning the Ologies Podcast Facebook group. Avaleen Malik makes our professional transcripts. Noel Dilworth is our scheduling producer. Susan Hale is our Managing Director and Editors Jake Chaffee and Lead Editor Mercedes Maitland to keep everything together audio wise. This one is dedicated, of course, to your Grandma Pod Nancy, AKA Fancy Nancy, my mom, and also to her MS group that have been such wonderful friends to her and our family over the years.

• 1:42:40Alie Ward?

  Nick Thorburn made the music, and if you stick around to the end of the episode, I tell you a secret. And this week it's that I'm still sick and I don't like it. And I want so badly to take Dayquil. And I read and experienced a few years ago that Dayquil, if you have anxiety, can make your anxiety much worse. So all day I've been like, do I take the Dayquil and maybe feel like I've had 17 cups of espresso? Or do I just keep breathing through my mouth? And I've chosen to breathe through my mouth. And we got this episode up anyway, and I'm very glad. So Mom, if you're listening, I think you're listening to the end. Love you. And thank you, everyone, for listening and pass this on to anyone you know who has been affected by MS or has someone in their life who hasn't. Okay. Bye bye.

• 1:43:41Alie Ward?

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• 1:44:25Alie Ward?

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• 1:45:05Alie Ward?

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