← Ologies with Alie Ward
Ologies with Alie Ward
Neuropathoimmunology (MULTIPLE SCLEROSIS) with Aaron Boster
01:37:01
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.
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- [00:00]
A
Oh, hey, it's a cough drop in your purse that you don't want to unwrap, but you desperately want to unwrap alie 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? 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. So we're going to talk to them in a moment. But first, thank you to all the listeners who are signed up@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 mag. 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 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 Safeguarded 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 we spend so much time looking at screens which can lead to eye strain At Pearl Vision their trusted eye doctors take the time to understand how your eyes are feeling and what they need. Eye strain can be managed with expert care from Pearle Vision. Schedule an eye exam at pearl vision get 40% off on a second pair for you or your family. Some restrictions and exclusions may apply. See Participating Source for details. Nobody cares for eyes more than Pearl.
- [03:08]
B
For years everyone thought Verizon had the best network because they did. But now the best mobile network in the US is T Mobile. T Mobile's network has the most advanced 5G with more towers and their signal reaches further than ever. So you can text and insta talk and say you won't believe where I am. T Mobile has the best mobile network in the US based on analysis by Ookla of speed test intelligence data 1H2025CT mobile.com network okay, onward.
- [03:38]
A
Just to get legal about it for a sec, this podcast is not intended to treat or diagnose and is for informational 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. Erin Foster 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.
- [04:37]
B
With pleasure. Aaron Boster he, him, his Dr. Boster.
- [04:43]
A
Of course, as the Internet knows you.
- [04:47]
B
There you go.
- [04:48]
A
I feel like in terms of people doing outreaching 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.
- [05:06]
B
Thank you.
- [05:06]
A
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.
- [05:14]
B
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 disempack 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 a mess. 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 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 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, 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 going to say to the patient.
- [06:48]
A
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.
- [07:03]
B
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 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 a really solid way of trying to convey information in a meaningful fashion.
- [07:31]
A
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.
- [07:38]
B
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. Wow. What? Yeah. And so it's not a rare condition. And something really culturally cool has happened, at least from my perspective. We started to see Ms. Enter into the mainstream. 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. I've had people tell me I used to inject each week with the president. 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 when we were kids.
- [08:37]
A
And Selma Blair, Christina Applegate, people that, yeah, my. Our generation, maybe Gen Xers, Boomers, grew up with, now are seeing people that they watched as teenagers who are diagnosed.
- [08:48]
B
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.
- [08:57]
A
Annette Funicello was a Mouseketeer 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.
- [09:20]
B
Like, these folks went through what we unfortunately called a 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. It's a very different condition in that regard.
- [09:34]
A
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 may be first diagnosed? They don't know what it is, or someone who asks you what you specialize in?
- [09:45]
B
Right on. So I explained 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 and cover your mouth when you're coughing. 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.
- [10:35]
A
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 TD one 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.
- [11:02]
B
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. So in a nutshell, that's how I like to try to help introduce Ms. To somebody.
- [11:48]
A
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.
- [12:26]
B
So there are different camps of Ms. Neurologists. I'm in the camp. I believe it's actually one condition with different phenotypes.
- [12:33]
A
Oh, okay.
- [12:34]
B
Although you could talk to somebody else who would say nuh, 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 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 days you got to come clean it like you can't feel your leg. 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. 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.
- [13:46]
A
Got it.
- [13:47]
B
And that's a concept that is not ubiquitously accepted by all Ms. Neurologists. But you know they're wrong.
- [13:55]
A
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?
- [14:09]
B
Absolutely. So the word sclerosis is Greek for scar, because God forbid we used, like, standard language, it would be way too easy for everybody to understand. 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 God, 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 of genes that encode for your immune system that you share that greater population. 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. Wow. 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. Yeah. The Epstein bar.
- [15:28]
A
Yeah.
- [15:29]
B
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.
- [15:40]
A
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.
- [15:48]
B
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, like a lot of Americans. And what they found was 95% of that population has been exposed to mono. 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. Wow. Now, that doesn't mean that a pasty white kid who is around some smoke and didn't have a high vitamin D and got mono is going to 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. Well.
- [17:04]
A
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?
- [17:32]
B
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 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, et cetera.
- [18:25]
A
And does 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?
- [18:35]
B
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.
- [18:57]
A
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.
- [19:07]
B
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. 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.
- [19:57]
A
Oh.
- [19:57]
B
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 a 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. Wiggled their finger, both sides of the brain lit up like a Christmas tree.
- [20:33]
A
Wow.
- [20:33]
B
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.
- [20:57]
A
Real estate, which is such a good point. I think when we talk about chronically ill people and disabled folks who are have what's called invisible illness, they're wiggling their figure, but 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.
- [21:18]
B
It's such a good point. I'm really glad that you brought it up because the vast majority of pathology and 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 theres 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 bowel 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, a well intended spouse who might say something like, well I'm tired too, okay?
- [22:05]
A
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.
- [22:18]
B
Aaron says, 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.
- [23:06]
A
It's a good one. What about things like diagnosis and symptoms? Because obviously the more ahead of it you get, the better treatment you get, the more knowledge you get. Amen, 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 them about the illness sucks. Ask them about the diagnosis and they will go off.
- [23:41]
B
Yeah, you touched on so many really important things. There is a prodrome before Ms. Prodrome defined as vague symptoms prior to 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. Mississippi 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 an optic neuritis where the optic nerve is affected, or a transverse myelitis where the spinal cord is affected, or a brainstem syndrome. But those don't always come to the attention of doctors. You know, I can't tell you how many times someone says, yeah, I was in my 20s, 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. Yeah, 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.
- [25:06]
A
Yeah.
- [25:06]
B
Assuming you call that green stuff in your veins blood. The readings are perfectly normal for me, Doctor. Thank you. See, there you go.
- [25:14]
A
I wish.
- [25:15]
B
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.
- [25:25]
A
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.
- [26:00]
B
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 task. Now, if you're listening, in Europe, most people across the pond, they're all tapped. 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.
- [26:52]
A
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 cell 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 Erin sent me a voice note about what's called an Ms. Disease activity test.
- [27:32]
B
We have desperately needed better biomarkers in the field of multiple sclerosis. Now, for some time now, a 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 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.
- [28:31]
A
So, yeah, pretty darn exciting. And octavebio.com has more info on that test. Now, what else will a doctor do if you 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, wrong path.
- [29:02]
B
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, 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. Yeah, it makes me feel sad.
- [29:23]
A
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.
- [29:33]
B
Yeah.
- [29:34]
A
A doctor said that's a symptom of, 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. Yep.
- [29:45]
B
What do you do?
- [29:46]
A
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?
- [29:55]
B
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 noggin. And if you have a symptom, it's going to last longer than a day. So as an example, if you wake up in your hands numb and you shake it out and it feels better, you probably don't have to call me. If you wake up in 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, but that rule really helps people, like, not lose their. You know, when we're talking about diagnosis, if you meet the diagnostic criteria, we diagnose an S and move forward. But. 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 gonna have ms, Aaron, 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.
- [31:10]
A
Yeah. So Aaron has what he calls a 5 for 5 framework to help slow the progression of Ms. And we'll mention them again in more detail. But a 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 ocrevus, the empira, like the gabapentin, like which of them?
- [31:42]
B
So I'll divide therapies into three. Okay. 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. Or use the example of gabapentin, neurontin. This is a medicine invented to treat seizures, but it's used ubiquitously to treat neuropathic pain. Mississippi 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.
- [32:46]
A
Better.
- [32:46]
B
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. Used an example of Ocrevus, which is probably the most utilized medicine in the world to treat Ms. It's the only medicine that can treat both relapsing and primary progressive forms of Ms. I'll tell you just a quick story. I was involved in the Ocrevus 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. 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.
- [34:04]
A
And this drug, the brand name is Ocrevus, 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 take the immune system down too low, you might have increased risks for infections and some types of 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 sauna, so no more sunbathing, 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. And my family dreads the summer or dreads overheated winter environments.
- [35:04]
B
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. Okay? So you have the extension cord out and your spouse Runs over it 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. 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. 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 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. 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 is 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.
- [37:13]
A
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 at looking 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 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. Now, using hypnosis, Charcot was 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 Gliese, who had been a survivor of childhood abuse and was diagnosed with hysteria. And when Louise was like, hey, doc, let's not 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. 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.
- [38:55]
B
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 noodly. And that's because these areas of damage that short circuit, they don't work very well when it gets. It gets hot out, it's really frustrating.
- [39:36]
A
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 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.
- [39:58]
B
Correct. Well stated.
- [40:00]
A
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 stud 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.
- [40:25]
B
You know, for a long time, and this was not just specific to ms, it was similar in Parkinson's disease, following 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, this was the, 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, 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, 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 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.
- [41:57]
A
Exercise is medicine. And it's printed on their courtyard right outside of his lab's building. Exercise is medicine in. So it's a good thing to remember. Now back to Dr. Boster, who echoes that.
- [42:10]
B
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. And 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 functional reserve was unprecedented. You know, they could skip a night of sleep. They didn't care. And that's what they remember, 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 a nothing. It was actually too much, 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 at the end of their lives, they maintain cognition, and they handle attacks better. And so there's so many reasons why exercise is important, and yet it ain't easy. Yeah, that's why, you know, we really have to kind of help someone impacted by Ms. Find that balance in the right ways to exercise and not overdo it and not use that high school mentality of. Of if I can do one mile today, I can do two miles tomorrow.
- [43:30]
A
Right. And also, do you give any advice to your patients on staying safe so that they don't have a fall?
- [43:36]
B
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. Well, let's hear them. 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 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 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 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.
- [44:44]
A
Oh, and I have so many more questions. Can I ask listener questions that were submitted?
- [44:48]
B
I would love it. Absolutely. Yeah. Yeah, that's really good.
- [44:51]
A
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 Erin for the heads up about them and thank you to sponsors for making it possible to donate to a cause every week. This podcast brought to you by Squarespace Ologies is brought to you by Squarespace. I procrastinated doing a podcast, a website for years and then right before I launched Ologies, I was like, I better get my shiz together. And I heard about Squarespace from another podcast. Did it in one night. I was like, why did I wait so long? Whether you're just starting or maybe you're scaling your business, Squarespace, it's an all in one website platform designed to help you succeed online and get your domain name. You can find really great templates that look super polished. You can review your website traffic. You can track track revenue from like bookings or invoices or product sales all in one place. And Squarespace also has email campaigns which are huge. You can grow your business. Those are all built in. So head to squarespace.com ologies for a free trial and when you're ready to launch, you can use offer code ologies to save 10% off your first purchase of a website or domain. Just do it. You can do it. I did. I love it. Listen, summer is winding down. This means that chips and dips are no longer lunch. Well, you can skip expensive takeout and you can skip unhealthy options because Home Chef is like hello, I'm here. They deliver fresh ingredients and delicious meals directly to you. Users of leading meal kits got together and they rated them all and they rated Home Chef number one in quality and convenience. Also value and recipes and taste. Taste. The numbers have spoken so if you prefer like classic meal kits with the pre portioned ingredients, they got them. They have quick 30 minute recipes. They have oven ready options you just pop in. They got microwave meals in case you need something to take to work. They also have a family menu if I need to tweak my habits a little bit. Slam dunk. So easy. Let's say you want to go vegetarian for a while.
- [47:26]
B
Boom.
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A
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B
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A
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B
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- [49:50]
A
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 Guyson, Connie, Connie, Bo Bunny, Angie Yingst, Adam Foote, and Chandler Witherington. 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 Boboni declares autoimmune diseases are a bitch. And I agree with Connie. So yeah. Do they tend to come in clusters?
- [50:22]
B
Yes, kinda. So if you have one autoimmune disease, you're statistically more likely to have a second autoimmune disease. And in the setting of ms, the most common second autoimmune disease is actually thyroid. Oh, 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. Yeah, 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.
- [51:04]
A
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 sloppy question. Yeah, you get it.
- [51:25]
B
No, 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, and I don't think that we found great evidence that Covid can cause multiple sclerosis. Although when you have a infection, what happens? Your immune system revs up. When you get a vaccine, what happens? Your immune system revs up. And so it stands to reason that you might manifest an attack in someone who is going to have ms, but it's a very gray area and there's a lot of of debate amongst Ms. Neurologists and there's a lot of misinformation floating around. It's a hot topic for sure.
- [52:27]
A
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 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 Peekin 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.
- [53:48]
B
Mess?
- [53:48]
A
And my question really spawns from the bevy of pseudoscience and pseudo health 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 more nightshades.
- [54:04]
B
More sugar, yeah. So the first comment that I'll make is there's no diet which has been proven to slow multiple sclerosis. Okay, 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, 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 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.
- [54:56]
A
Okay?
- [54:57]
B
You know, many of us are dehydrated and a lot of Ms. Symptoms are exacerbated by dehydration. Bowel and bladder is exacerbated. Fatigue, cog fog, 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, foods. And I find time and time again when people adopt like a healthy natural food diet, they just feel better.
- [55:46]
A
Unfortunately. Yeah, folks, diet does have an effect on how we're feeling regardless of Ms. And I'm speaking to a me 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.
- [56:25]
B
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 $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.
- [56:50]
A
And you mentioned how important dehydration is in terms of symptoms. But also we know that the down there and bladder can be really difficult. And Becky Grady says, I have Ms. Is there any viable treatment for bladder control issues? And amen.
- [57:07]
B
Yes.
- [57:07]
A
Yeah. Why is that a symptom. 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?
- [57:17]
B
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 they're.
- [57:34]
A
There's.
- [57:35]
B
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. Seriously? Seriously. And so I would say that bladder problems are very common in Ms. And. 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 rationally 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 irritants. And if you have bacteria in the bladder and it's a really concentrated urine, that's a better place for bacteria to live. It's kind of like if you have, like a cup of urine and you put it on the kitchen counter and 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. Water.
- [59:04]
A
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, Lily 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 flimflam? 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?
- [59:45]
B
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, over 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.
- [60:23]
A
High.
- [60:24]
B
And we're not exactly sure that it's related to hormones. I know that sounds like goofy pants, but yes, there's this. This sexual dimorphism where women are more likely to develop most autoimmune conditions compared to men. Yeah, 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. Okay, 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 estriol, 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 cycle, you can see an uptick of disease activity. Well, most women enter perimenopause around age 45 and estrogen levels start to fall at 40. And so when the, the protective estrogen levels are now falling down, the rates that women in their 50s progress is the same as with men.
- [61:40]
A
Oh.
- [61:41]
B
And so that's freaky deaky. What I find is hormone replacement therapy tends to help with a lot of symptoms.
- [61:47]
A
Huh.
- [61:47]
B
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.
- [61:58]
A
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 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.
- [62:20]
B
Yeah, I agree.
- [62:21]
A
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.
- [62:31]
B
Yes.
- [62:32]
A
Do you think it could be possible to use the gut microbiome as a non invasive early detection method? What's the research on that right now?
- [62:41]
B
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 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.
- [63:52]
A
Love it. I can't wait for those. My husband, 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.
- [64:07]
B
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 prebiotics, biotic 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 prime time, It's a long way off, but I do think that there's a relationship there. I absolutely do.
- [64:36]
A
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.
- [65:21]
B
Actually said that.
- [65:22]
A
Miracles. It's a strong word. Calm down. But it's promising. Yes. And it continues. It Lactobacillus, bifidobacterium and streptococcus in Ms. Patients switches 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 EPIS 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 Gene's words, I usually read that demyelination from Ms. Occurs primarily or only in the cns. How often do we see the myelin sheaths damage in the peripheral what's eating that myelin? And is there any way to just get it back?
- [66:22]
B
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 you know, AIDP cidp, which can cause demyelination of the peripheral nerves. And what's interesting is, even though they sound rather similar in neurology, when we subdivide into like our little areas is 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, looked at when you develop EBV mono and you make an antibody which binds to one of the proteins on mono, that same antibody identifies one of the proteins on oligodendrocyte myelin.
- [67:57]
A
Aha.
- [67:58]
B
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. Therapy piece, which is remyelination.
- [68:10]
A
Yes.
- [68:10]
B
So demyelination is when you strip the plastic coating off the wire, remyelination is when you would put it back on.
- [68:17]
A
Yeah.
- [68:17]
B
And I hypothesize 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.
- [68:40]
A
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 showing 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.
- [69:18]
B
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 anti inflammatory. And I don't mean anti inflammatory like an aspirin. I mean central nervous system anti inflammatories like you mentioned. B cell depleters like ocrevus ocrelizumab. 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 anti inflammatory 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.
- [69:57]
A
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. Yep, I'm sick today. The options ran out. A stem cell transplant is the thing that's gonna help me, if anything will. 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?
- [70:22]
B
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 hematom hepa poetic 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 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 stem cells. 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, 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. 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 cure 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 swab 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.
- [72:29]
A
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 transfusion. 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.
- [73:09]
B
So it's a very hot topic and I would simply ask someone, listening, 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.
- [73:23]
A
Yeah, right. And in therapies to help manage symptoms. Gene Kelly wanted to broach the topic of ganja. They said 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?
- [73:48]
B
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 though, this late in the discussion because it always comes, 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 ascribe to this. And so at first I said no. Then something really weird happened. I had a dear patient of mine in her 70s who is a teetoter riddler 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 70 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. 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 a sewing circle and said, let's all lie to Aaron and tell them all the same luck, 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 things. Number one, it doesn't slow down the Ms. 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.
- [75:55]
A
How do they work? Are they anti inflammatory? What are they doing in. In there?
- [75:59]
B
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, 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.
- [76:54]
A
Oh, my God.
- [76:55]
B
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. 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. Things.
- [77:21]
A
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 experience extensive Ms. Symptom improvement after initiation of medical cannabis with alleviation of pain 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? In 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 Cannabidiol and Brain Function, Current Knowledge and Future Perspectives in the Journal of Frontiers in Pharmacology. And it reported that the endocannabinoid system in our bodies controls most bodily functions, including sleep, temperature, pain reception, inflammatory and immune responses, learning and memory, processing emotions and eating, making it the subject of most drug development. And this 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.
- [79:25]
B
All right, all right, all right.
- [79:28]
A
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?
- [79:41]
B
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. Mm. 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 is 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.
- [80:24]
A
Less.
- [80:24]
B
And the advantage of vaping is it's a very, very fast onset. So if you have a charlie 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.
- [80:36]
A
Oh, got it. Okay.
- [80:38]
B
Now, I have some patients that would never, ever want to, you know, 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, 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 take the edible and you cut it in half, so you got 5 milligrams. And I tell them, you know, towards the end of their afterwards dinner, take an edible and then just do your normal routine. Don't sit around like scared looking in the mirror to see if you grow hands, you know, do your thing and don't redose. 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 any other medicine. And if 5 milligrams doesn't work, you don't want to be like a, a 20 year old boy and then take another five, then another 10, you know, and pretty soon you're going to have a really bad evening.
- [81:49]
A
Yeah.
- [81:49]
B
And so you keep notes and over a coup couple 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. And so we can use different routes of administration of cannabinoids to really target symptoms the same way that we do with Lyrica or Neurontin 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. Dr. From Israel and he said, in Israel we give patients with Ms. Rolled joints for, for free. And I said, really? 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, you know, I mean, okay, that was really funny.
- [83:10]
A
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?
- [83:27]
B
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, right? So you live one time, you have one central nervous system 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, 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 going to minimize my symptoms and hide them because I want to, I don't want to appear like a bad. Like you got to come in there and be like, look, look man, I can't get an erection. 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 a 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 who thinks that they can make a chronic problem like an autoimmune condition better just with the medicine.
- [84:58]
A
And we also have a dology episode with Dr. Rachel Zofnus, 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.
- [85:24]
B
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 a 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 would be the two things that I really think are important.
- [85:53]
A
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?
- [86:00]
B
Sure. Yes, for sure. So, you know, I will tell people that I want them to be 5 for 5 in their fight 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 to it later. Right. And I need people to embrace exercise like that as part of their lifestyle.
- [86:35]
A
That's so smart because there's so many of us who are like, oh, I have to do exercises at 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, you know?
- [86:49]
B
Exactly, exactly. And this needs to be part of what you do. Right. So the second thing is to eat smart in, 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.
- [87:14]
A
Yeah.
- [87:15]
B
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, 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, to just try to practice doing it. So. You know, I shared with you that I have a lifestyle of showering. 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, boster, get up, what are you doing? Like, and I learned to just let all the thoughts go and I'll spend five minutes, ten minutes just breathing. And it's transformative. It's 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 sure it's working. And I want to refer the most effective DMT that you're comfortable taking and make sure it's working.
- [88:28]
A
And what's, what exactly is the dmt?
- [88:31]
B
It's a disease modifying therapy.
- [88:32]
A
So I thought you meant like this stuff where you see little shiny aliens like you smoke it on the beach.
- [88:37]
B
Oh, my bad. You're like, oh, Aaron, that's a very. No.
- [88:40]
A
So I was like, holy. Really? Yeah.
- [88:43]
B
No, what I mean is I want you on the most effective disease modifying therapy that you're comfortable taking.
- [88:48]
A
Okay.
- [88:49]
B
And I want to make sure that it's working.
- [88:51]
A
So we have a psychedelics episode all about the therapeutic effects of hallucinogens with a highly respected researcher, Dr. Charles Grob 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 Terence McKenna, described these commonly seen benevolent being 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. 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 gonna let Erin tell you vintage via this voice note.
- [89:46]
B
There are a couple things going on right now in the Ms. Space which really have me jazzed. Amongst the biggest are some of the developments in the brutein tyrosine kinase or BTK inhibitor space. We studied one BTK inhibitor called tolobrutinib in a non relapsing secondary progressive Ms. Trial called the Hercules trial. And I'm very proud that at the Boster center we enrolled a bunch of patients into this trial. Now 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. Now this medication has been fast tracked at the American FDA and we believe that probably come September 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 telebrutinib 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. I'll cross my fingers for you.
- [90:53]
A
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 Nahuas wanted to know, in Lisa's words, how close is research getting to a cure? Or what are the next steps taken to get get there? How encouraged are you? How crestfallen are you?
- [91:11]
B
My honest answer is I don't think that we're going to see a cure in my lifetime.
- [91:15]
A
Yeah.
- [91:16]
B
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, a, B and T cell.
- [91:36]
A
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.
- [91:45]
B
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 going to cure Ms. In the near term. Now, I want to be really clear that in medicine we cure nearly nothing. Like, 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. Bottom boring. 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, say, what are you doing? Oh, I'm giving myself my 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 going to get more and more boring where someone can live their life and then Ms. Doesn't get to pick what happens.
- [93:21]
A
Something obviously a lot about your job probably so looks but I always ask this at the end, what's the hardest part about your job? What sucks?
- [93:30]
B
So the only way that I know how to do this is to walk with a family and I've learned that I have to grieve losses with someone and you know, losing your ability to wear high health shoes is a loss. You know, this is a disease that sometimes we can wrangle to the ground but we can't keep 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 lucky and we make the disease boring. Sometimes Mississippi laughs at me and thinks a I'm joke and watching a young person develop chronic condition is, is a really hard thing. It's a really, really hard thing to experience. And so, 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, 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.
- [94:39]
A
What advice do you give someone who's newly diagnosed who has questions about well, is this going to kill me and how much longer do I have?
- [94:46]
B
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.
- [95:06]
A
How about accommodations that people might need? Any, any advice on how to advocate for yourself if you do need accommodations, donations.
- [95:13]
B
So I, 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.
- [95:54]
A
To obtain groceries 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, 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 are 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.
- [96:30]
B
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 vocation 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 test 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 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, 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. And so I think searching out accommodations and again, going back to self advocacy and being selfish is paramount to success.
- [98:05]
A
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?
- [98:14]
B
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, so 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. An easily digestible snippet that then somebody can watch at their leisure. And so 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. 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 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, 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.
- [99:32]
A
I'm sure your family's so proud. They must just. What a mensch.
- [99:39]
B
Thanks. I'll tell my mom you said that.
- [99:43]
A
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 BosterMD, 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@alieward.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 Ologies on Instagram and bluesky. We also have shorter kid friendly episodes called smologies S M O L O G I E s and you can subscribe to those as your summer road trips turn into some autumn carpools. Or I guess the opposite for all of our friends on the other side of the equator, Smallogies are linked in the show notes. They're available for free. Wherever you get podcasts, we have ologies merch@ologiesmerch.com t shirts, sweatshirts, totes mugs await you. Thank you to Erin Talbert for admin in the Ologies podcast Facebook group, Avileen Malik makes our professional transcripts. Noelle Dilworth is our scheduling producer, Susan Hale is our managing director and editors Jake Chaffee and lead editor Mercedes Maitland. 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. Nick Thorburn made the music and if you stick around to the end of the episode, I tell you see, 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 has it. Okay, bye bye. Pachydermatology, Cryptozoology, Litology, Nanotechnology, Meteorology, olfactology, mapology, serology, cello, gummy bears and gummy worms. Being diagnosed with leukemia, lymphoma, myeloma, or one of over 100 other types of blood cancer makes people want more time to do the things they love. We are blood Cancer united. We do the most for more people with blood cancer. Join us and donate@bloodcancerunited.org if you're sleeping.
- [102:26]
B
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