Speaker 1: Oh hey, it's a cough drop in your purse that
Speaker 1: you don't want to unwrap, but you desperately want to unwrapped.
Speaker 1: Ali ward with an episode. It's close to my heart
Speaker 1: and there's a chance that you or someone you love
Speaker 1: may have been affected by it. And the verdict is
Speaker 1: it's not fun and a lot of people don't really
Speaker 1: get what it is. This one's on multiple sclerosis, so
Speaker 1: if you like to understand how your body routes messages
Speaker 1: to itself, this is also a great one to get
Speaker 1: a grasp on that. So this topic is close to
Speaker 1: my family as my mom. You're Fancy Nancy who originated
Speaker 1: the categories insomnia buster that we talked about in the
Speaker 1: Somnology episodes on sleep y'all love her, you love that.
Speaker 1: So my mom was diagnosed with multiple sclerosis over twenty
Speaker 1: years ago and our family has had to go from
Speaker 1: like what is this? To how can I seek out
Speaker 1: the world's foremost expert on this and ask all of
Speaker 1: our questions on behalf of people with MS. So that's
Speaker 1: what we did here. So this expert did their undergrad
Speaker 1: at Oberlin College, got an MD at the University of
Speaker 1: Cincinnati College of medicine and then hopped over to the
Speaker 1: University of Michigan for their resident and internship programs before
Speaker 1: another two year fellowship. And they are a Board certified
Speaker 1: neurologist specializing in multiple sclerosis and founded the Boster Center
Speaker 1: for MS. They've been involved with a ton of clinical trials,
Speaker 1: They've had so many papers published, and also does awesome
Speaker 1: outreach to the public and people of MS via their
Speaker 1: YouTube channel, which has nearly one hundred thousand subscribers. They're
Speaker 1: pretty much the goat when it comes to MS. So
Speaker 1: we're going to talk to them in a moment. But first,
Speaker 1: thank you to all the listeners who are signed up
Speaker 1: at Patreon dot com slash ologies who support the show
Speaker 1: for a dollar or more a month and also submit
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Speaker 1: You can support ologies by leaving a review, which keeps
Speaker 1: us up in the charts and as proof that I
Speaker 1: do read all of them. I pick one each week
Speaker 1: and this one is from our j LeCount who wrote
Speaker 1: Nerds Unite love this show so much and the merch
Speaker 1: is an absolute nerd magnet. They wore their Ologies shirt
Speaker 1: when they're at the hospital all day and got more
Speaker 1: compliments from medical staff than they have on anything they've worn.
Speaker 1: They wrote, so our j Leacount, thank you for wrapping us. Also,
Speaker 1: hospitals great place to meet other Ologites can a test
Speaker 1: ten out of ten. Also, if you have little ones
Speaker 1: and you're looking for any classroom save versions of Ologies,
Speaker 1: we release them every week for free in their own feed.
Speaker 1: It's called Smologies Smologies. You can find anywhere to get
Speaker 1: podcasts classroom safegy rated. That's also linked to the show
Speaker 1: notes and thanks of course to sponsors of the show
Speaker 1: who make it possible to donate to a cause of
Speaker 1: the ologists choosing each week. Okay onward, just to get
Speaker 1: legal about it for a sec. This podcast is not
Speaker 1: intended to treat or diagnose and is for informational purposes
Speaker 1: only because this is a podcast and it is not
Speaker 1: your doctor. So let's hear all about how nerve tissue works,
Speaker 1: how your spinal cord is like a holiday decoration, The
Speaker 1: five strategies anyone can use to feel better, novel testing
Speaker 1: methods for MS. Public figures who are raised awareness about MS,
Speaker 1: some past, some future, and some tips for loved ones
Speaker 1: and people who have multiple sclerosis with neurologist MS expert
Speaker 1: and neuropatho immunologist doctor Aaron Foster. The first thing I'm
Speaker 1: gonna have you do is if you could say your
Speaker 1: first and last name and tell me what pronounce you use.
Speaker 2: With pleasure Aaron Boster.
Speaker 1: He him his doctor Boster. Of course, as the internet
Speaker 1: knows you, there you go. I feel like in terms
Speaker 1: of people doing outreaching communication about multiple sclerosis, I feel
Speaker 1: like I don't see many people communicating the way that
Speaker 1: you do, so thoroughly and so friendly for patients. It's
Speaker 1: really lovely to see. I've sent my mom so many
Speaker 1: of your videos. My mom knows of your work. She
Speaker 1: has a mess thank you? So yeah. Did you always
Speaker 1: want to communicate what you were doing? Or did you
Speaker 1: just want a doctor? When did you decide because being
Speaker 1: a doctor's had enough of a job.
Speaker 2: So I'm a bit of a weirdo. I decided to
Speaker 2: be an MS doc when I was twelve. My uncle
Speaker 2: Mark had a mess. Since my I don't remember a
Speaker 2: memory when my uncle didn't have a mess, so I
Speaker 2: knew what it meant to have to disunpack someone I
Speaker 2: knew what it meant when you had to help someone eat.
Speaker 2: Long before I knew like what neuroimmunology was. And I remember,
Speaker 2: like rather vividly. I was at my grandmother's house. My
Speaker 2: grandmother or my mother were in the kitchen. My uncle
Speaker 2: was where he always was, watching TV in the other
Speaker 2: room in his wheelchair. My mother and grandmother were crying.
Speaker 2: They were holding hands, and they weren't crying because my
Speaker 2: uncle had a mess. They were crying because they couldn't
Speaker 2: get a hold of their freaking doctor. And this predates
Speaker 2: the interwebs. This predates like things like YouTube. And I
Speaker 2: told my mom that I would learn to do it
Speaker 2: better now. I didn't know what I was telling my mom,
Speaker 2: Like I didn't know that I would be bald before
Speaker 2: before I finished my training, or that I'd have to
Speaker 2: learn like a weird lexicon. I just knew that nobody
Speaker 2: should make my family feel that scared and alone. And
Speaker 2: so I've been kind of mission driven, Like I was
Speaker 2: a weirdo in high school that said I want to
Speaker 2: be an MS doc, and I sought out my education
Speaker 2: in a very directed fashion, really just with the goal
Speaker 2: of like educating and empowering and energizing families impacted by MS,
Speaker 2: because somebody should have done that for my family, and
Speaker 2: I can't help them, you know, they've passed on. But
Speaker 2: then if I can help someone else's family, that really
Speaker 2: fills a bucket for me. And I was I think
Speaker 2: it was like twenty fifteen and I was in clinic
Speaker 2: with my fellow. I was training this fellow and someone
Speaker 2: didn't show up, and I got all pissed off, and
Speaker 2: so I handed on my phone and I said record this,
Speaker 2: and I just recorded what I was going to say
Speaker 2: to the patient.
Speaker 1: Doctor Broster started uploading videos to YouTube when he realized
Speaker 1: that patients, the ones in his care or people he
Speaker 1: would never even meet, could learn more and educate their
Speaker 1: loved ones or use the video for reference later, because
Speaker 1: in a doctor's office it can be information overload.
Speaker 2: You may have like rushed through traffic, or you may
Speaker 2: be really scared, or who knows. So if I can
Speaker 2: convey that same snippet of information and put it on
Speaker 2: the interwebs, then you can watch it like at three
Speaker 2: in the morning in your bathrobe. That's the right time
Speaker 2: for you. And sometimes with MS, like you know, you
Speaker 2: might not take it all in the first time. So
Speaker 2: then you can watch it again, and it just seems
Speaker 2: like a really solid way of trying to convey information
Speaker 2: in a meaningful fashion.
Speaker 1: How many people have MS? Because my mom's had it
Speaker 1: for she got diagnosed twenty years ago, but she had
Speaker 1: it for years before that without the doctor's knowing what
Speaker 1: it was.
Speaker 2: So it's a really interesting point you bring up. Until
Speaker 2: very recently twenty nineteen, we thought that there were about
Speaker 2: four hundred thousand people in the United States with MS,
Speaker 2: and it wasn't until twenty nineteen when there were some
Speaker 2: proper epidemial logic studies done in the United States that
Speaker 2: they realized that we were really wrong and there's a
Speaker 2: million people in the United States alone that have MS.
Speaker 1: Wow.
Speaker 2: What Yeah, And so it's not a rare condition and
Speaker 2: something really culturally cool has happened, at least from my perspective.
Speaker 2: We've started to see MS enter into the mainstream. You know.
Speaker 2: So there was the West Wing TV show where a
Speaker 2: character on the West Wing, the person who played the
Speaker 2: had MS. And I can't tell you how many people
Speaker 2: with MS it helped normalize. Like I've had people tell
Speaker 2: me I used to inject each week with the President.
Speaker 2: Just seeing MS on TV helps normalize it, and so
Speaker 2: I think that it's become a little bit less stigmatized
Speaker 2: and a little bit more mainstream than it was even
Speaker 2: you know, when we were kids.
Speaker 1: And Sma Blair, Christina Applegate, people that my our generation
Speaker 1: maybe Gen xers boomers grew up with, now are seeing
Speaker 1: people that they watched as teenagers who are diagnosed.
Speaker 2: That's exactly right, you're right, you know, and the famous
Speaker 2: people with MS of the last generation didn't have access
Speaker 2: to care, Richard pryor, you know, the Mickey Mouse Club.
Speaker 1: Anette Funicello was a mouse katier and a star of
Speaker 1: nineteen sixties beach party movies, and she kept her MS
Speaker 1: diagnosis private for years until rumors swirled that her balance
Speaker 1: issues were due to alcoholism. So she was like, no, jerks,
Speaker 1: I have MS. And she later established the Annett Funicello
Speaker 1: Fund for Neurological Disorders. But this was forty years ago.
Speaker 2: Like, these folks went through what we unfortunately call the
Speaker 2: natural history of multiple strosses, like what happens if you
Speaker 2: don't treat, And so we're now seeing a generation of
Speaker 2: people treated, and it's a very very different set of variables.
Speaker 2: It's a very different condition in that regard.
Speaker 1: And now that we know about how many people have it, Okay,
Speaker 1: we know it is, but how do you describe it
Speaker 1: to people who may be first diagnosed they don't know
Speaker 1: what it is, or someone who asks you what you
Speaker 1: specialize in?
Speaker 2: Right on, So I explained to people that in order
Speaker 2: to understand MS, we have to think about the immune system. Right. So,
Speaker 2: there's all these organ systems in the body, like you know,
Speaker 2: the cardiovascar system pumps blood all over the place, and
Speaker 2: the immune system is the part of your body that
Speaker 2: fights off bad guys like foreign and so when some
Speaker 2: kid coughs on you and gives you a virus, the
Speaker 2: immune system identifies it as a bad guy and whoops it.
Speaker 1: You cover your mouth when you coughing.
Speaker 2: And the immune system is not supposed to attack yourself,
Speaker 2: and so if the immune system sees part of you,
Speaker 2: it should just be like hey me and leave you alone. Now,
Speaker 2: sometimes the immune system makes an error in judgment and
Speaker 2: it identifies part of your body as a foreign invader,
Speaker 2: and so that's called an autoimmune condition. And there's a
Speaker 2: lot of autoimmune conditions that people are pretty familiar with. So,
Speaker 2: for example, if the immune system beats up on the pancreas.
Speaker 2: We call that childhood diabetes.
Speaker 1: And this was called childhood or juvenile diabetes because the
Speaker 1: onset and the diagnoses of this autoimmune condition tends to
Speaker 1: happen early in life. But we now call it type one,
Speaker 1: or you can call it TD one. If you're cool,
Speaker 1: you can check out our two part diabetology episode with
Speaker 1: self described diabetic diabatologist doctor Mike Natter. Oh, we also
Speaker 1: have a long COVID two parter with doctor Wes Ely,
Speaker 1: and we'll link those for you in the show notes.
Speaker 1: But yeah, lots of ways to have an autoimmune issue.
Speaker 2: Or if the immune system beats up on the joints
Speaker 2: of the hands and feet, we call that rheumatoid arthritis.
Speaker 2: So I explain that multiple sclerosis is an autoimmune condition
Speaker 2: where the immune system unfortunately attacks the holiest of holies,
Speaker 2: the supercomputer that runs the body, the brain, and the
Speaker 2: super highway the spinal cord that takes the information up
Speaker 2: and down. And depending on where that attack occurs, determines
Speaker 2: what the human being experiences. So if the immune system
Speaker 2: attacks the nerve that runs the left eye, that human
Speaker 2: unfortunately is not going to see very well. And it's
Speaker 2: going to hurt like the dickens when they move their eye.
Speaker 2: It's called an optic neuritis. Or if the immune system
Speaker 2: attacks the spinal cord, then the legs may be numb
Speaker 2: and tingly or weak, and the down theres the bow
Speaker 2: bladder bedroom part of our bodies don't work very well.
Speaker 2: So in a nutshell, that's how I like to try
Speaker 2: to help introduce MS to somebody.
Speaker 1: And so with MS, there are said to be different subtypes.
Speaker 1: There's relapsing remitting, which means it can come and go
Speaker 1: in severity or episodes. There's primary progressive, which means kind
Speaker 1: of a stable worsening of symptoms and lesions, and secondary
Speaker 1: progressive can relapse and remit, but gradually does worsen. And
Speaker 1: these classifications have changed over the years since my mom
Speaker 1: was diagnosed, which gets confusing, but my family always kept
Speaker 1: an eye out because we would hear that there were
Speaker 1: different clinical trials for different types, or certain medications were
Speaker 1: only recommended for, say, relapsing remitting, and my mom has
Speaker 1: primary progressive.
Speaker 2: So there are different camps of MS neurologists. I'm in
Speaker 2: the camp I believe it's actually one condition with different phenotypes. Oh, okay,
Speaker 2: although you could talk to somebody else who would say nuh,
Speaker 2: you know, but you're stuck talking to me. And when
Speaker 2: we talk about primary progressive MS, what we're really saying
Speaker 2: is the human being, typically around their forties, started to
Speaker 2: have a slow, steady decline and neurological function and they
Speaker 2: never had any clear cut so called attacks where they
Speaker 2: got really bad over a couple days and then it
Speaker 2: lasted for a couple of weeks, and we call that
Speaker 2: primary progressive MS. If the human instead had a so
Speaker 2: called attack flare, exacerbation, relapse first, and that's where you
Speaker 2: lose a neurological function and you try to hide it
Speaker 2: from your family, and after a couple days you got
Speaker 2: to come clean, like you can't fill your leg. Well.
Speaker 2: Then we call that a relapse, and that person is
Speaker 2: said to have relapsing forms of MS. Here's the thing.
Speaker 2: If you follow the relapsing MS patient ten years, they
Speaker 2: start to have a progression of disability, which perfectly matches
Speaker 2: primary progressive MS. So there are those of us that
Speaker 2: believe that the form frust of MS is this slow
Speaker 2: study decline and that some patients skip or avoid the
Speaker 2: early relapsing phase, which is kind of like noise on
Speaker 2: top of the actual real disease.
Speaker 1: Got it.
Speaker 2: And that's a concept that is not ubiquitously accepted by
Speaker 2: all MS neurologists. But you know they're wrong.
Speaker 1: What about the eteology you mentioned, like your body or
Speaker 1: immune system, it's overactive, it starts attacking neurological tissue and
Speaker 1: the multiple and multiple sclerosis, can you talk a little
Speaker 1: bit about what that means?
Speaker 2: Absolutely? So the word sclerosis is Greek for scar, because
Speaker 2: god forbid we use like standard language. It would be
Speaker 2: way too easy for everybody to UNDERSTANDS. So multiple sclerosis
Speaker 2: is really a reference to back in the ancient days
Speaker 2: of yesteryear, where people did like autazis and they would say,
Speaker 2: oh my gosh, there are multiple scars here. So if
Speaker 2: you think about our understanding of what causes MS is fledgling.
Speaker 2: So what we think happens in MS is not a
Speaker 2: classic genetic condition. So most people listening might think of
Speaker 2: like a genetic condition as like cystic fibrosis or like
Speaker 2: sickle cell anemia, where if you have it, a certain
Speaker 2: number of your kids are gonna have it, and in
Speaker 2: MS it's not so straightforward. But what it does mean
Speaker 2: is you probably have certain haplotypes of genes that encode
Speaker 2: for your immune system that you share with that greater population.
Speaker 2: Then we believe that there's certain environmental risks factors which
Speaker 2: might increase or decrease giving humans risk to develop MS.
Speaker 2: For example, exposure to smoke, so firsthand or secondhand smoke
Speaker 2: can literally double an individual's risk to develop MS.
Speaker 1: Wow.
Speaker 2: And so low levels of vitamin D pre puberty also
Speaker 2: changed the risk. We then think that your body sees
Speaker 2: an infection and we think we've nailed it down to
Speaker 2: the kissing flu to you know, mononucleosis EBV. Yeah, and
Speaker 2: your body contracts EBV and your immune system identifies it
Speaker 2: as a bad guy, and your immune system makes an
Speaker 2: arsenal of T cells in B cells that make antibodies
Speaker 2: against EBV.
Speaker 1: Okay, So it's like Mono, you're out of here. I
Speaker 1: got you. Yeah, and I had Mono that landed me
Speaker 1: in the hospital.
Speaker 2: So amen, yep, that's exactly right. And so you survived
Speaker 2: mono because your immune system cleared it, and you keep
Speaker 2: an arsenal against mono the rest of your life. But
Speaker 2: in some people, those same cells that identify mono by
Speaker 2: accident now identify your brain as mono, and so that's
Speaker 2: called cross reactivity, like where the antibody binds to something
Speaker 2: it's not supposed to, and when that happens, when that
Speaker 2: gets set up, we don't know how to undo it.
Speaker 2: Now it's really a little bit interesting because we've known
Speaker 2: that mono could have potentially been requisite to develop MS.
Speaker 2: But they did a really cool study with the Veteran's
Speaker 2: Administration Hospital with ten million Americans, like a lot of Americans,
Speaker 2: and what they found was ninety five percent of that
Speaker 2: population has been exposed to mono. You have, I have,
Speaker 2: but of the eight hundred people in the study with MS,
Speaker 2: all of them but one had been exposed to mono,
Speaker 2: And so those numbers are actually highly statistically significant, and
Speaker 2: it sort of reinforces this concept that mono may be
Speaker 2: a requirement to develop MS. Now, that doesn't mean that
Speaker 2: a pasty white kid who was around some smoke and
Speaker 2: didn't have a high vitamin D and got mono is
Speaker 2: going to get MS, not at all. But as we understand,
Speaker 2: those are the steps that are probably involved in later
Speaker 2: on going on to develop MS.
Speaker 1: Well, you know, I'm wondering too, because you mentioned Richard
Speaker 1: Pryor I'm thinking Montel Williams. Obviously it's not just people
Speaker 1: of European descent. But if you're genetically historically have evolved
Speaker 1: to handle high amounts of UV radiation and then say
Speaker 1: your family gets stolen and moved to a different continent
Speaker 1: and you live in you know, Michigan or something, to
Speaker 1: those levels of vitamin D not being really on par
Speaker 1: with what your evolution has been, like, like, does that
Speaker 1: have any correlation.
Speaker 2: It's a really interesting discussion. You know, I was trained
Speaker 2: in Detroit, Michigan, where there's a very large population of
Speaker 2: African Americans that live in Detroit, and as a result,
Speaker 2: there was a very large African American MS population that
Speaker 2: we saw. And when I was coming up through the ranks,
Speaker 2: I was taught incorrectly that MS was a disease of
Speaker 2: young white women and that ethnic minorities were less likely
Speaker 2: to develop MS. And that's false. And so it turns
Speaker 2: out that the percentages of MS amongst African Americans, Hispanic
Speaker 2: Americans are the same as white people. There's just more
Speaker 2: white people in the United States. Now, what's very very
Speaker 2: important is that unfortunately, if you are an ethnic minority
Speaker 2: and you get MS, the disease is driven faster, so
Speaker 2: after Americans with MS tend to have a much more
Speaker 2: aggressive disease course, Hispanic Americans tend to have a much
Speaker 2: more aggressive disease course, and that factors into our thinking
Speaker 2: about how aggressive we are with therapies, etc.
Speaker 1: Is that also have anything to do just with systemic
Speaker 1: factors like who has access to care and who is
Speaker 1: getting seen by doctors, who's getting listened to.
Speaker 2: It doesn't appear to be now. Of course, there are
Speaker 2: some very serious concerns about access to care which we
Speaker 2: I don't want to gloss over. However, there's some beautiful
Speaker 2: studies done mostly out of UCSF which try to parse
Speaker 2: that out in separate from those issues just the ethnicity alone,
Speaker 2: there is a difference in severity of disease even when
Speaker 2: you parse out like socioeconomic things and the like.
Speaker 1: And for anyone living with MS, where is the fatigue
Speaker 1: coming from? Well, for people who don't have MS, Aaron
Speaker 1: helps visualize what it's like to be in their shoes.
Speaker 2: So if you and I were to go for a
Speaker 2: stroll and I attached weights to your feet and you
Speaker 2: kept time with me, so we're walking in step together
Speaker 2: at the end of our stroll and you finished at
Speaker 2: the same time I did. You're exhausted, way more tired
Speaker 2: than I am, because you were dragging weights behind the
Speaker 2: whole time we were walking. When you look at where
Speaker 2: the brain damage occurs in the setting of multiple sclerosis,
Speaker 2: it's most commonly in the so called white matter. Now,
Speaker 2: the white matter are the wires connecting the parts of
Speaker 2: the computer. So when one side of the brain, the cortex,
Speaker 2: the thinking part, wants to communicate with the other side,
Speaker 2: it sends electrical messages through the wires the white matter.
Speaker 2: And when you have new lesions that's a doctor term
Speaker 2: for like the white spot, the area of brain damage
Speaker 2: that you can see on the MRI, the brain rewires
Speaker 2: around it. Oh and so yeah, what ends up happening
Speaker 2: is the brain repairs itself to the best of its ability,
Speaker 2: and the human being can continue to do whatever function
Speaker 2: that is, but they use a boatload more brain to
Speaker 2: get the job done. To make that point, A long
Speaker 2: time ago, I was an assistant professor at a university
Speaker 2: and we were doing a really cool study where we
Speaker 2: put people into a functional MRI machine and we have
Speaker 2: them wiggle their finger and if a quote healthy control
Speaker 2: wiggle their finger. You would see the contralateral motor cortex
Speaker 2: light up like in the textbook, like normal stuff. When
Speaker 2: someone with MS wiggled their finger, both sides of the
Speaker 2: brain lit up like a Christmas tree. They were using
Speaker 2: tremendous amounts of brain to get the job done. Now,
Speaker 2: many of them were able to do it just as fast,
Speaker 2: just as accurately as a healthy control. But coming back
Speaker 2: to this fatigue thing, it's my opinion, at least to
Speaker 2: some degree, that the reason that someone with MS suffers
Speaker 2: from such profound fatigue the most common symptom in MS,
Speaker 2: is because in order for them to get the job done,
Speaker 2: they're using a lot more brain. You know, they're using
Speaker 2: a lot more real estate.
Speaker 1: Which is such a good point. I think when we reach
Speaker 1: about chronically ill people and disabled folks who have what's
Speaker 1: called invisible illness, they're wiggling their figure, but they can't
Speaker 1: do it for longer, and no one understands exactly what
Speaker 1: it's taking for them. They might not understand my mom
Speaker 1: probably doesn't understand exactly how much brain power she's using
Speaker 1: to get through a day.
Speaker 2: It's such a good point. I'm really glad that you
Speaker 2: brought it up. Because the vast majority of pathology in
Speaker 2: MS is invisible. And you know, honey, you look so
Speaker 2: good is a very common comment. And you know, a
Speaker 2: really savvy patient will say, I'm not faking sick, I'm
Speaker 2: thinking well. And you think about the most common symptoms
Speaker 2: in MS. You know, I think about the up theres
Speaker 2: so energy, mood, thinking, and memory. They're all invisible. The
Speaker 2: leading cause of loss of work in MS is not
Speaker 2: loss of leg function, it's loss of ability to concentrate
Speaker 2: and stay awake. Or you think about the down theres bow, bladder, bedroom.
Speaker 2: Those are invisible symptoms to the outside observer, and they're
Speaker 2: devastating in many respects. And so you're spot on. I
Speaker 2: try sometimes to give an example to like a well
Speaker 2: intended spouse who might say something like, well, I'm tired.
Speaker 1: Too, Okay, but one person's tired is not the same
Speaker 1: tired as MS tired. Imagine what your brain and body
Speaker 1: would feel like if you tried, like pulling back to
Speaker 1: back all nighters and then went to work.
Speaker 2: Aaron says, so two nights of no sleep, then the
Speaker 2: next morning we're going to go for a walk and
Speaker 2: talk about fatigue. It's that kind of fatigue where the
Speaker 2: human being is desperately trying to keep their eyes open,
Speaker 2: they're trying to make eye contact, and they're desperately trying
Speaker 2: to take the information in. You know, I'm going to
Speaker 2: date myself. But when I was in medical training, we
Speaker 2: didn't have duty hours, so you stayed until the work
Speaker 2: was done. And I remember thirty six forty hours into working,
Speaker 2: you know, there'd be a long hallway in the hospital
Speaker 2: and I would close my eyes while I was walking,
Speaker 2: just to take a break, you know, and just hope
Speaker 2: I didn't smack into a wall. And it's that kind
Speaker 2: of I call it pathologic fatigue that many people with
Speaker 2: MS struggle with, you know, and then their spouse or
Speaker 2: their loved ones, well, you don't look tired, so you
Speaker 2: don't look ill informed.
Speaker 1: It's a good one. What about things like diagnosis and symptoms,
Speaker 1: because obviously, the more ahead of it you get, the
Speaker 1: better treatment you get, the more knowledge you get, Amen,
Speaker 1: your life's going to be better. But a lot of times,
Speaker 1: I know with my mom, my mom had something vague
Speaker 1: going on, didn't know what it was. My mom called
Speaker 1: it this thing for a good six years before she
Speaker 1: was diagnosed, and then even then she still called it
Speaker 1: this thing. But people who have MS, I feel like
Speaker 1: you ask them about the illness sucks, ask them about
Speaker 1: the diagnosis, and they will go off.
Speaker 2: Yeah, you touched on so many really important things. There
Speaker 2: is a prodrome before MS. Prodrome defined as vague symptoms
Speaker 2: prior to diagnosis. And when you look at like claims
Speaker 2: data where people who later on get a MSS and
Speaker 2: you go backwards three to five years, you'll see a
Speaker 2: massive uptick in prescriptions, a massive uptick in er visits, hospitalizations,
Speaker 2: and doctor visits, and they tend to cluster in psychiatric, gynecologic,
Speaker 2: and gastro like symptoms because the symptoms are something involving
Speaker 2: the central nervous system. So if you said, like, could
Speaker 2: MS cause blank, the answer is probably yes. MS doesn't
Speaker 2: do like skin primarily, it doesn't do joint primarily, but
Speaker 2: just about anything else is a possibility. And so you know,
Speaker 2: the most common presentations are an optic neuritis where the
Speaker 2: optic nerves affected, or a transversemyelitis where the spinal cord
Speaker 2: is affected, or a brain stem syndrome, but those don't
Speaker 2: always come to the attention of doctors. I can't tell
Speaker 2: you how many times someone says, yeah, I was in
Speaker 2: my twenties, I was running a lot. I thought my
Speaker 2: shoes sucked because my feet were numb, and then it
Speaker 2: went away, and so I just ignored it and I
Speaker 2: didn't see anything else for years. They probably were having
Speaker 2: an attack, And I'm not trying to suggest that they
Speaker 2: weren't doing a good job. They did what all of
Speaker 2: us do. We just like keep on keeping on and
Speaker 2: we don't have like a tri quarter like on Star
Speaker 2: Trek where you scan some yeah, assuming you call that
Speaker 2: green stuff in your veins blood. The readings are perfectly
Speaker 2: normal for me, doctor, thank you. So there you go.
Speaker 2: I wish me too. The second thing is really old school.
Speaker 2: It's doing an old school neuroexam. You know, the neuroexam
Speaker 2: dates back to you know, ancient Chinese history, and it's
Speaker 2: a really inaccurate thing.
Speaker 1: And a neurologic exam is usually just conducted in the
Speaker 1: doctor's office and it's a series of questions to assess
Speaker 1: mental status. Maybe they'll have you repeat a sentence, they'll
Speaker 1: ask if you know the date and time, They'll check
Speaker 1: pupils and reflexes. They may have you walk in a
Speaker 1: line or touch your nose with your fingertips. And if
Speaker 1: this sounds like something that a cop might perform on
Speaker 1: the side of the highway, well they do share commonalities,
Speaker 1: except the officer might not also take your blood pressure
Speaker 1: or your insurance. So the neuroexam, it's pretty analogue, pretty basic,
Speaker 1: and it does miss stuff. Hell yes, it misses some stuff.
Speaker 2: No. When the eighties this machine came out, which was
Speaker 2: really exciting, and it's called the MRI, and it's completely
Speaker 2: revolutionized diagnosis. It became gospel in two thousand and one
Speaker 2: and it's been revised to make it easier and faster
Speaker 2: and faster to use the MRI to make a quick diagnosis.
Speaker 2: And so we get an MRI of the brain and
Speaker 2: the spine, and if we see spots in certain locations,
Speaker 2: we can diagnose ms right there. If not, then we
Speaker 2: can old school weight for another attack, which is never
Speaker 2: the goal. We can repeat the scans at intervals looking
Speaker 2: for new spots, or we can depend upon a lumbar
Speaker 2: puncture spinal tap. Now, if you're listening in Europe, most
Speaker 2: people across the pond, they're all tapped. Here in the
Speaker 2: United States, that happens a lot less frequently, but you
Speaker 2: can see changes on this spinal tap on the CSF,
Speaker 2: which would then help sentch a diagnosis and.
Speaker 1: A spinal tap also called the lumbar puncture. It involves
Speaker 1: just siphoning just a wee bit of cerebral spinal fluid
Speaker 1: out from between your vertic just kind of like a
Speaker 1: little sip of maple syrup, and then pathologists will check
Speaker 1: it out for increased antibodies or even fragments of nerve
Speaker 1: cells from where the insulating sheets have been frayed by
Speaker 1: one's own over zealous and kind of like lost immune cells.
Speaker 1: But still about ten percent of folks with MS can
Speaker 1: have normal looking cerebral spinal fluid. Now, since we've recorded this,
Speaker 1: something exciting has happened, and Aaron sent me a voice
Speaker 1: note about what's called an MS disease activity test.
Speaker 2: We have desperately needed better biomarkers in the field of
Speaker 2: multiple scrosis now for some time now, a biomarker is
Speaker 2: simply a measurement which teaches us something about the human being,
Speaker 2: and the most common biomarker in the MS space has
Speaker 2: been and continues to be the MRI. So we're getting
Speaker 2: a picture of brain and spine structure There's a test
Speaker 2: which has been developed and now been validated in several
Speaker 2: very well done trials, which is a blood test, and
Speaker 2: a high number on this test correlates with concern for
Speaker 2: disease activity, particularly on the MRI. A low number suggests
Speaker 2: disease stability. Now, this test is approved by the American FDA.
Speaker 2: It's starting to be increasingly used in MS clinics around
Speaker 2: the United States. It's not covered ubiquitously by insurance yet,
Speaker 2: but I think we're going to see that change. And
Speaker 2: having this new diagnostic tool, this octave DA test really
Speaker 2: assists in our assessment and monitoring of patients, which is
Speaker 2: pretty darn exciting.
Speaker 1: So yeah, pretty darn exciting. And octavebio dot com has
Speaker 1: more info on that test. Now, what else will a
Speaker 1: doctor do if you present with things like tingling and
Speaker 1: numbness and vision problems, or balance issues, or fatigue and
Speaker 1: other MS symptoms. Nearly everyone I've met with MS seems
Speaker 1: to have had a really arduous and frustrating journey to
Speaker 1: their diagnosis. Without advanced ways of diagnosing, there's just a
Speaker 1: lot of stones to turn over, and oftentimes they're sent
Speaker 1: down the wrong path.
Speaker 2: A lot of things can cause you to be numb.
Speaker 2: It doesn't have to be MS. It could be be
Speaker 2: twelve deficiency, you know, it could be diabetes. Got to know,
Speaker 2: there's a host of things, and so a diagnosis is
Speaker 2: a tough animal. And your point's very well taken that
Speaker 2: if you talk to someone with MS, they have a story,
Speaker 2: you know, and it's generally not like a nice story. Yeah,
Speaker 2: it makes me feel sad.
Speaker 1: And for people who let's say I have a friend
Speaker 1: who has a tough job and has anxiety, and she's
Speaker 1: gone through periods where her hands get numb. Yeah, a
Speaker 1: doctor said, that's a symptom of your anxiety. That's a
Speaker 1: symptom of stress. Right, So let's say that you have
Speaker 1: something like that. And also, if you live in America,
Speaker 1: an MRI could bankrupt you.
Speaker 2: Yep, what do you do? Yeah?
Speaker 1: What do you do if you're like, is this just
Speaker 1: my shoes? I have shitty shoes or is this a
Speaker 1: first attack of AS?
Speaker 2: So I really recommend what I call the twenty four
Speaker 2: hour rule. Right, So, if you punched me in my
Speaker 2: face and my face get all puffy, that's caused by inflammation.
Speaker 2: And if we looked at my face tomorrow, it's more
Speaker 2: puffy because inflammation doesn't go away in a couple hours.
Speaker 2: It'll last days. When you have an MS attack, it's
Speaker 2: caused by inflammation in the nagin and if you have
Speaker 2: a symptom, it's going to last longer than a day.
Speaker 2: So as an example, if you wake up in your
Speaker 2: hand's numb and you shake it out and it feels better,
Speaker 2: you probably don't have to call me. If you wake
Speaker 2: up in your hands numb and the next day it's
Speaker 2: more numb. Now it's meant the twenty four hour rule,
Speaker 2: and now I want to hear about it. Now that
Speaker 2: doesn't mean therefore it's multiple sclerosis, but that rule really
Speaker 2: helps people like not lose their shit. You know, when
Speaker 2: we're talking about diagnosis, if you meet the diagnostic criteria,
Speaker 2: we diagnose the MS and move forward. But there's a
Speaker 2: gray area where it looks like you might go on
Speaker 2: to have MS, but we're not sure. And that's a
Speaker 2: very scary spot for someone to be in, and they
Speaker 2: become hyper aware of their own body. Like as I
Speaker 2: talk to you my headaches right and said maybe you're
Speaker 2: going to have MS, arin, I would ask myself is
Speaker 2: the itchy head related? And so the twenty four hour
Speaker 2: rule is how I try to help people not go bonkers.
Speaker 2: Trying to like sort that out.
Speaker 1: Yeah, so Aaron has what he calls a five or
Speaker 1: five framework to help slow the progression of MS, and
Speaker 1: we'll mention them again in more detail, but a quick overview.
Speaker 1: Don't smoke, do exercise, do eat clean, and take vitamin
Speaker 1: D if you're low. Take your disease modifying therapy from
Speaker 1: regular checkups and annual MRIs to medications, and practice mindfulness.
Speaker 1: Now we're going to chat more about those, but let's
Speaker 1: start with the meds and what kinds of drugs are these?
Speaker 1: Are these like the okravis, the empirera, like the GABA
Speaker 1: pend like which of them?
Speaker 2: So I'll divide therapies into three. Okay, when someone god
Speaker 2: forbid has an attack, we can use high dose cordic
Speaker 2: asteroids or things like cordic asteroids to hasten recovery. You know,
Speaker 2: you have an area of inflammation in the brain er
Speaker 2: spinal cord, and you give these really crazy high doses
Speaker 2: of steroids and you quell that and you get them
Speaker 2: better faster, and some of us leave. You get them
Speaker 2: more better, And so that's one category of medicines or therapies,
Speaker 2: and that's an as needed kind of thing. When someone
Speaker 2: God forbid, has an attack, then separate from that, we
Speaker 2: treat symptoms. So symptoms are things that suck, and so
Speaker 2: you use the example of ampurra. Impura is a medicine
Speaker 2: which helps buttress the human against heat sensitivity. Not I
Speaker 2: dislike heat, but when my body gets overheated, I go
Speaker 2: blind again, God forbid, Or when my body gets overheated,
Speaker 2: I can't control my bladder, and a medicine like Empeira
Speaker 2: can buttress against that. Or use the example of gabapentin neurontin.
Speaker 2: This is a medicine invented to treat seizures, but it's
Speaker 2: use ubiquitously to treat neuropathic pain. MS is a very
Speaker 2: painful condition and people can have a limb that looks normal,
Speaker 2: but it's burning, and so we can use the symptomatic
Speaker 2: medicine to make that better. There's a third category of medicine,
Speaker 2: which really is what I was talking about, which we
Speaker 2: call disease modifying therapies. And these are medicines that literally
Speaker 2: change the disease course. They change the trajectory, they decrease attacks,
Speaker 2: they decrease the new spots on the brain and they
Speaker 2: slowed the accumulation of disability. Used an example of Okrevis,
Speaker 2: which is probably the most utilized medicine in the world
Speaker 2: to treat MS, and it's the only medicine that can
Speaker 2: treat both relapsing and primary progressive forms of MS. I'll
Speaker 2: tell you just a quick story. I was involved in
Speaker 2: the Okrevis trials and it was twenty seventeen. We had
Speaker 2: sort of like a sense of the results, but I
Speaker 2: paid a lot of money to fly to the big
Speaker 2: international meeting in Barcelona, Spain, and I sat in the
Speaker 2: audience and I cried like a little kid as they
Speaker 2: presented the PPMS data because this was the very first
Speaker 2: time in the history of the universe that we did it.
Speaker 2: We finally were able to impact primary progressive MS. You know,
Speaker 2: many of us have spent clinical trial after clinical trial
Speaker 2: after clinical trial failing at cracking that nut. And here
Speaker 2: we finally did it. And it's such an impactful thing
Speaker 2: in my life. I want to give a shout out
Speaker 2: to my patients in central Ohio who participated in that trial,
Speaker 2: and it's because of that that we can prove that
Speaker 2: this drug works in these diff femotypes for MS. That's
Speaker 2: a really special thing to me.
Speaker 1: And this drug, the brand name is Ocrivis, is an
Speaker 1: immunosuppressant that essentially tells your immune system in hyperdrive to
Speaker 1: just cool its jets and to stop beating up on
Speaker 1: your central nervous system so much. But it's not without
Speaker 1: its own risks. So when you take the immune system
Speaker 1: down too low, you might have increased risks for infections
Speaker 1: and some types of cancers. Other side effects can include
Speaker 1: things like rashes and nausea and heart rate fluctuations and more.
Speaker 1: And my family was really excited about this medication because
Speaker 1: it could be used on primary progressive MS, but unfortunately
Speaker 1: my mom did try it and her side effects were
Speaker 1: too severe to continue. Now another no go. We have
Speaker 1: learned over the years things like sawn us, no more sunbathing,
Speaker 1: desert excursions, long sleeves in July. What about heat? Why
Speaker 1: does heat make MS so much worse? Because that is
Speaker 1: something that unless you know someone with MS, you probably
Speaker 1: don't know that. But yeah, and my family dreads the
Speaker 1: summer or dreads overheated winter environments.
Speaker 2: There's a really really good reason. So you know, I'm
Speaker 2: holding up this wire right And let's take an analogy
Speaker 2: of like an extension cord that you'd use for your
Speaker 2: Christmas lights. Okay, so you have the extension cord out
Speaker 2: and your spouse runs over it with the lawn mower.
Speaker 2: It doesn't cut it in half, but nix it, and
Speaker 2: your spouse does what they're supposed to do. They don't
Speaker 2: tell anyone. They just duct tape it up and they
Speaker 2: put it away, right, why didn't you tell me? So
Speaker 2: then the wire no longer works one hundred percent, it
Speaker 2: works to say ninety percent. Now, later, when you get
Speaker 2: the extension cord out and you plug in two Christmas lights,
Speaker 2: they're gorgeous, they're sparkly. You just love them. And then
Speaker 2: you put in five more or ten more lights, and
Speaker 2: the whole thing short circuits because that damaged wire cannot
Speaker 2: hold a full load. Right, and so this is actually
Speaker 2: what's happening with the central nervous system. And you know
Speaker 2: that wire could be your spinal cord. It's a pretty
Speaker 2: good analogy. So when there's been damage to the spinal
Speaker 2: cord and you strip the mile in that's the plastic
Speaker 2: coating on the wire off, you have what's called a
Speaker 2: conduction block where the electricity just doesn't go through. And
Speaker 2: then what your body does is it puts in a
Speaker 2: bunch of ion channels, and so you can conduct electricity.
Speaker 2: And let me use an analogy the Great Wall of China.
Speaker 2: So the way that they communicated on the Great Wall
Speaker 2: of China was every couple of miles they'd have a
Speaker 2: bonfire and if they saw like the Mongol hordes, they
Speaker 2: would light the bonfire. And then miles away a guy
Speaker 2: would see the bonfire and he would light his bonfire,
Speaker 2: and you could communicate up and down the Great Wall
Speaker 2: of China wicked fast. That's the way like a wire
Speaker 2: works when it's not damaged, that's the way the neuron
Speaker 2: works when it's not damaged. When it's damaged, and you
Speaker 2: have to put in all these sodium channels, now you
Speaker 2: can't propagate a message really quickly. And so if I
Speaker 2: use the Great wallid China, the bonfire's out. There's no bonfire.
Speaker 2: So what the guy does he jumps on a horse
Speaker 2: and as fast as you can, he rides down the
Speaker 2: Great Wall, which is way the heck slower, and it
Speaker 2: still gets the message there, but it doesn't work as fast.
Speaker 2: Now let's go back to the neuron the wire that
Speaker 2: system is extra xdremely heat sensitive. Those ion channels are
Speaker 2: extremely heat sensitive. So if you heat the human body up,
Speaker 2: you leach the ions out and again you have conduction
Speaker 2: block and when the body close back down, it works again.
Speaker 1: And if you're ever involved in the most challenging game
Speaker 1: of trivia ever, I hope it helps you to know
Speaker 1: that this is called Utof's phenomenon, after a late eighteen
Speaker 1: hundreds German ophthalmologist who noticed vision challenges when patients who
Speaker 1: had MS got overheated. And if you're like, how long
Speaker 1: have we, the royal we known about MS, Well, this
Speaker 1: is news to me. But a French neurologist named Jean
Speaker 1: Martin Chukou identified and researched several neurological disorders, contributing to
Speaker 1: the science of Parkinson's and Tourette syndrome and identifying MS
Speaker 1: in eighteen sixty eight. He also dove right into the
Speaker 1: condition of what was called hysteria, named after the uterus,
Speaker 1: because at the time it was not that only women
Speaker 1: could be crazy like that. Now, using hypnosis, Choko would
Speaker 1: bring out states of agitation and emotionality in patience and
Speaker 1: most famously photographed the facial expressions of this local mental
Speaker 1: asylum patient named Louise Augustine Glias, who had been a
Speaker 1: survivor of childhood abuse and was diagnosed with hysteria. And
Speaker 1: when Louise was like, hey, doc, let's not to the
Speaker 1: photographs anymore, she was sent to solitary confinement. But then
Speaker 1: she later escaped, dressed in a suit looking like a
Speaker 1: dapper gent. She got out, she disappeared into the freedom
Speaker 1: of the night. She was never seen again. But yeah,
Speaker 1: Charcot did do some groundbreaking research in neurology that still
Speaker 1: holds up today. But he also had a little bit
Speaker 1: of a sketch reputation and he earned the nickname the
Speaker 1: Napoleon of the neuroses. But as a neurologist, he did
Speaker 1: identify MS in eighteen sixty eight, which was good, And
Speaker 1: then Udhoff identified this phenomenon of stay out of the
Speaker 1: heat MS. Friends.
Speaker 2: Now, this drives people with MS crazy because they'll be
Speaker 2: fine in the beginning of a walk, and as they
Speaker 2: walk and their body gets hotter and hotter, they short circuit.
Speaker 2: And sometimes, you know, people are with will say, what
Speaker 2: the heck, you are fine, you know, just earlier today.
Speaker 2: But it's because of this heat sensitivity phenomenon. It's kind
Speaker 2: of a unique thing to multiple sclerosis, but it's extremely real.
Speaker 2: We in Ohio have four seasons, and a lot of
Speaker 2: my patients during the winter months they get stiff because
Speaker 2: spasticity gets worse when you're cold, and then during the
Speaker 2: summer months they get quote floppy or newtlely and that's
Speaker 2: because these areas of damage that short circuit, they don't
Speaker 2: work very well when it gets gets hot out. It's
Speaker 2: really frustrating.
Speaker 1: Yeah, and we're talking to a kinesiologist about staying active
Speaker 1: with MS and how much those therapies can help, because
Speaker 1: I know that it's like to thread that needle of
Speaker 1: staying active and keeping your muscles strong, but also not
Speaker 1: over exerting yourself and not doing something that can put
Speaker 1: you in the path of a fall, which can be devastating.
Speaker 2: Correct well stated.
Speaker 1: I was fortunate enough to talk to doctor Brett Fling,
Speaker 1: who is a Colorado State University researcher and a kinesiologist
Speaker 1: who has a lab dedicated to understanding and helping folks
Speaker 1: with MS who have gait issues. Now, Brett's mother has
Speaker 1: had MS for decades and as someone who studied physical
Speaker 1: activity and disease progression. He had some expert insight into movement.
Speaker 1: So here's a little bit of that conversation with doctor
Speaker 1: Brett Flnk.
Speaker 3: You know, for a long time, and this was not
Speaker 3: just a specific to MS, it was someone in Parkinson's disease,
Speaker 3: fall in a stroke, old age, et cetera. We would
Speaker 3: tell folks to take it easy. You don't want to
Speaker 3: wear yourself out. You don't want to get fatigued. So
Speaker 3: the less you move, the better. It turns out that
Speaker 3: is the exact wrong advice for anyone's nervous system, whether
Speaker 3: a healthy eighteen year old or someone with a neuro
Speaker 3: gener disease in your seventies. The more you can safely
Speaker 3: move your body and activate muscles, activate those nerves, and
Speaker 3: communicate throughout your nervous system, I think, the better off
Speaker 3: you are. So with multiple sclerosis for a long time,
Speaker 3: this was the was the approach we took, was don't
Speaker 3: exhaust yourself, take it easy because you don't want to
Speaker 3: get fatigued. Now I'm not saying that you should automatically
Speaker 3: go run a marathon, but the more you can move,
Speaker 3: and you know, movement slash exercise is really specific to
Speaker 3: the individual. So for some folks that might mean running
Speaker 3: a marathon, it might mean riding a bicycle. It might
Speaker 3: simply mean getting up out of your chair, more being
Speaker 3: less sedentary, walking around your house a little bit, more
Speaker 3: walking to get the mail. You know, exercise has a
Speaker 3: pretty broad meaning and definition, and so the more that
Speaker 3: you can safely move, the better is our approach.
Speaker 2: Nowadays.
Speaker 3: One of the things that kinesiology really sticks to and
Speaker 3: suggests that is through the American College of Sports Medicine ACSM,
Speaker 3: which is a huge national body that sort of oversees
Speaker 3: kinesiology based research. Their motto is exercises medicine. And so,
Speaker 3: you know, our big picture approach is that the less
Speaker 3: sedentary time you have, the better off the body is
Speaker 3: going to be. And we think that's a very true
Speaker 3: for multiple sclerosis.
Speaker 1: Exercise is medicine. And it's print on their courtyard right
Speaker 1: outside of his Labs building. Exercise is medicine. So it's
Speaker 1: a good thing to remember. Now back to doctor Boster
Speaker 1: who echoes that.
Speaker 2: So a lot of times when we diagnose someone with MS,
Speaker 2: one of the things that I need them to do
Speaker 2: is to adopt exercise as part of their lifestyle. And
Speaker 2: many adults or young adults, the last time they really
Speaker 2: exercised was the glory days of high school when they
Speaker 2: had boundless energy. You know, their neurological functional reserve was unprecedented.
Speaker 2: You know, they could skip a night of sleep, they
Speaker 2: didn't care, and that's what they remember. And so they
Speaker 2: take that spirit into the gym and they have a
Speaker 2: wonderful day. They really, they do all the things, and
Speaker 2: then they're in bed for two days or three days.
Speaker 2: And so instead, what I need to help families understand
Speaker 2: is you want to use the next day as an
Speaker 2: assessment of if you overdid it. So if you do
Speaker 2: ten minutes on the treadmill and you think that's a nothing,
Speaker 2: but the next day you're having trouble walking, it wasn't
Speaker 2: a nothing, it was actually too much. And so slow
Speaker 2: and steady wins the race. And there's ample data that
Speaker 2: people impacted BOMs who do exercise as part of their lifestyle,
Speaker 2: they're less disabled in their lives, they maintain cognition, and
Speaker 2: they handle attax better. And so there are so many
Speaker 2: reasons why exercises is important, and yet it ain't easy. Yeah,
Speaker 2: that's why you know, we really have to kind of
Speaker 2: help someone impacted bioms find that balance and the right
Speaker 2: ways to exercise and not overdo it and not use
Speaker 2: that high school mentality of if I can do one
Speaker 2: mile today, I can do two miles tomorrow.
Speaker 4: Right.
Speaker 1: And also, do you give any advice to your patients
Speaker 1: on staying safe so that they don't have a fall?
Speaker 2: Yes, falls are very, very scary, not just because you
Speaker 2: can hit your head, but you can shatter your hip.
Speaker 2: People impacted BOMs over the age of fifty have thinning
Speaker 2: bones compared to the general population, and so you add
Speaker 2: a fall, and that can be a devastating game changer.
Speaker 2: And so there are some things that we want to
Speaker 2: think about.
Speaker 3: Well, let's him.
Speaker 2: If you're not sure how to engage in exercise, one
Speaker 2: of the very best ways of getting it kicked off
Speaker 2: is to work with a neurophysical therapist. These are like
Speaker 2: freaking ninjas that understand heat sensitivity, they understand unsteady gait,
Speaker 2: they understand weakness, they really get all this. They understand spasticity,
Speaker 2: and so they can start by assessing you and then
Speaker 2: helping you develop better gate mechanics, how to buttress against
Speaker 2: the fall, how to transfer and then we can take
Speaker 2: that information and we can turn it into a home
Speaker 2: wellness program. Another really great place for someone with MS
Speaker 2: who wants to exercise is water. Water's darn near magical.
Speaker 2: And so you know, in the water, you weigh less,
Speaker 2: so you can handle that weak leg better. If you're
Speaker 2: really a taxic and you're falling to the left, the
Speaker 2: water pushes back to the right. If your heat sensitive,
Speaker 2: the water wicks the heat away from your body. Spasticity
Speaker 2: decreases in the water.
Speaker 1: Oh and I have so many more questions. Can I
Speaker 1: ask listener questions that were submitting.
Speaker 2: I would love it absolutely. Yeah, yeah, that's really great.
Speaker 1: And before we get to your questions, my dear patrons,
Speaker 1: we will donate to a cause of Aaron's choice, and
Speaker 1: he directed it toward MS Viewsandnews dot org, which is
Speaker 1: a grassroots nonprofit was founded by Stuart Schlossman, who was
Speaker 1: diagnosed with MS himself, and Stuart and the folks that
Speaker 1: this nationally based patient advocacy organization provide educational programs and
Speaker 1: resources to empower and enhance the quality of life for
Speaker 1: the MS community, including those in rural areas. So go
Speaker 1: to msviewsannews dot org to share experiences, to gather information
Speaker 1: and to find their monthly MS Beacon newsletter. You can
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Speaker 1: So again, a donation went to Msnewsanviews dot org. So
Speaker 1: thanks Aaron for the heads up about them, and thank
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Speaker 1: a cause every week. Okay, let us saunter into the
Speaker 1: mailbag with questions submitted via patreon dot com slash ologies.
Speaker 1: A lot of people wanted to know about correlation with
Speaker 1: other autommune diseases, like Buddy Freakin Geyerson, Kanye Kanye Bobunny
Speaker 1: and Ji Yanks, Adam Foot and Chandler Wutherington. In Buddy's words,
Speaker 1: as someone who has both diabetes and MS, is it
Speaker 1: co for MS to show up and people with other
Speaker 1: autoimmune conditions? KNYE Connie Bobony declares autoimmune diseases are a bitch,
Speaker 1: and I agree with Connie, So yeah, do they tend
Speaker 1: to come in clusters?
Speaker 2: Yes, kinda. So if you have one autoimmune disease, you're
Speaker 2: statistically more likely to have a second autoimmune disease, and
Speaker 2: this setting of MS. The most common second autoimmune disease
Speaker 2: is actually thyroid. Oh but you will see constellations. Now,
Speaker 2: that doesn't mean that everyone with MS is gonna get
Speaker 2: a second autoimmune disease, but compared to the general population,
Speaker 2: one hundred percent, And if you have MS, I can
Speaker 2: find someone in your extended family with some autoimmune condition
Speaker 2: almost always. Now, it doesn't mean that someone else has MS,
Speaker 2: but it could be that like an aunt has Graves disease,
Speaker 2: or like an uncle has Type one diabetes or something else. Yeah,
Speaker 2: and again this goes back to in part some of
Speaker 2: like the shared genetics that we see. So they're spot on.
Speaker 2: Yes is the answer.
Speaker 1: Wow. And Lily Hart also says that two people in
Speaker 1: their life with MS, one has had MS mistaken for lime.
Speaker 1: Are there triggers with other infections? Are we seeing more
Speaker 1: MS after massive amounts of infection from covid or are
Speaker 1: do you ever? Yeah? It's a very yah, you get it.
Speaker 2: No, No, it's a very hot topic right now. We feel
Speaker 2: rather confident that EBV mono, as we were talking about earlier,
Speaker 2: is probably a prerequisite to developing multiple scrosis. We can't
Speaker 2: find evidence right now of other infections doing that. It's
Speaker 2: an ongoing debate and it's an ongoing area of research
Speaker 2: for example, for a while we were wondering whether chlamydia
Speaker 2: might be you know, and that didn't pan out. In
Speaker 2: the COVID era, there's a lot of misinformation, as you're
Speaker 2: well aware, and I don't think that we found great
Speaker 2: evidence that covid can cause multiple scrosis. Although when you
Speaker 2: have a infection, what happens your immune system revs up.
Speaker 2: When you get a vaccine, what happened, your immune system
Speaker 2: revs up, And so it stands to reason that you
Speaker 2: might manifest an attack in someone who is going to
Speaker 2: have MS. But it's a very gray area, and there's
Speaker 2: a lot of debate amongst MS neurologists, and there's a
Speaker 2: lot of misinformation floating them. It's a hot topic for sure, and.
Speaker 1: A twenty twenty study titled Vaccination in Multiple Sclerosis Challenging
Speaker 1: Practices Review in the journal Experimental and Therapeutic Practices notes
Speaker 1: that vaccination is proven to be one of the most
Speaker 1: effective means to prevent infections, but is still surrounded by
Speaker 1: controversy in the general populations as well as in the
Speaker 1: MS group, and vaccines are generally considered safe for MS patients,
Speaker 1: it reports, and the exceptions from this which turn into
Speaker 1: contraindications are a medical history of allergic reactions to one
Speaker 1: of the vaccine components and immunosuppressed patients in the particular
Speaker 1: case of live vaccines, So there are several different types
Speaker 1: of vaccines and life i've attenuated rather than inactive or
Speaker 1: mRNA vaccines. The live attenuator do have live virus in them,
Speaker 1: though they're weakened and they're not recommended for folks with MS.
Speaker 1: And those vaccines that have live attenuated virus could include
Speaker 1: measles and mumps and chicken pox and yellow fever. But yeah,
Speaker 1: controversial still, as are a lot of things that you
Speaker 1: put in your body, such as lunch. Now, patron Deborah
Speaker 1: Pican asks what do you say about a gluten free
Speaker 1: or other diet which has been said to benefit MS,
Speaker 1: And this is also asked by Allegrafavilla. Wanted to know
Speaker 1: if there is any scientific proof of any special diet
Speaker 1: helping MS. And my question reallysponds from the bevy of
Speaker 1: pseudoscience and pseudohealth advice that people with chronic illnesses like
Speaker 1: me are given every day, they say, and they've been
Speaker 1: told to change their diet. Eat only meat, eat vegan,
Speaker 1: no night shades, no sugar and.
Speaker 2: More night shades, more shirt.
Speaker 4: Yeah. Yeah.
Speaker 2: So the first comment that I'll make is there's no
Speaker 2: diet which has been proven to slow multiple sclerosis. So
Speaker 2: there's no diet that has been proven unequivocally to slow
Speaker 2: the disease. There are many proposed diets, and I believe
Speaker 2: firmly that a lot of these diets can improve fatigue
Speaker 2: and they can improve some of the symptoms of multiple scrosis.
Speaker 2: So I am a big believer that nutrition can impact
Speaker 2: disease course in disease severity. But I want to be
Speaker 2: clear that I don't think by itself that can like
Speaker 2: cure the condition. When I look at the data, You're
Speaker 2: right that it's really confusing because someone will say, whatever
Speaker 2: you do, don't drink melt, and someone else will be like, no, no,
Speaker 2: drink melt, and it leaves the human like not sure.
Speaker 2: There's a couple of things that I think are very relevant,
Speaker 2: and I'll list them off really quickly, but honestly, like
Speaker 2: therrelevant for all people, so I don't think it's unique.
Speaker 2: Number one is upping your water game. You know, many
Speaker 2: of us are dehydrated and a lot of MS symptoms
Speaker 2: are exacerbated by dehydration now and bladder is exacerbated, fatigue, cogfog.
Speaker 2: These are things that are really worse. And when someone's dehydrated,
Speaker 2: supplementing vit and D in my estimation, does help MS.
Speaker 2: And it looks like at least when you have low
Speaker 2: levels of vitamin D it's associated with worsening disease outcomes
Speaker 2: in MS, and it's an association, not a causal thing.
Speaker 2: But vitamin D is pretty cheap, and so you know,
Speaker 2: if you can't go out half naked in the sun
Speaker 2: for fifteen minutes a day, which in Ohio you have
Speaker 2: frostbite in bad places, you know, oftentimes we supplement vitamin D.
Speaker 2: The next big thing that I really try to get
Speaker 2: families to embrace is avoiding processed foods and sugar lating foods,
Speaker 2: fried foods, fast foods. And I find time and time
Speaker 2: again when people adopt like a healthy, natural food diet,
Speaker 2: they just feel better.
Speaker 1: Unfortunately, Yeah, folks, diet does have an effect on how
Speaker 1: we're feeling, regardless of MS. And I'm speaking to a
Speaker 1: me right now. And for more on this, you can
Speaker 1: see the twenty nineteen study, an evidence based look at
Speaker 1: the effects of diet on health which begins by saying
Speaker 1: that cardiovascular disease is the number one cause of death
Speaker 1: in the United States, and additionally, cancer and mood disorders
Speaker 1: both have significant impacts on morbidity and mortality, and what
Speaker 1: we eat, it says, may allow us to powerfully intervene
Speaker 1: on these the largest of health issues affecting our country.
Speaker 1: But these papers are often not as exciting in the
Speaker 1: headlines as like new research about pharma breakthroughs.
Speaker 2: So there isn't a lot of money to be made
Speaker 2: studying nutrition. There's no like drug company that's gonna, you know,
Speaker 2: fund seven hundred million dollar research into nutrition, And so
Speaker 2: the studies that are done nutrition are normally like smaller
Speaker 2: in their grassroots, and it makes it hard to study it.
Speaker 2: So you know, there are some really good works out there,
Speaker 2: but there're all works in progress.
Speaker 1: And you mentioned how important dehydration is in terms of symptoms,
Speaker 1: but also we know that the down theres and bladder
Speaker 1: can be really difficult. And Becky Grady says, I have MS.
Speaker 1: Is there any viable treatment for bladder control issues? And yeah,
Speaker 1: why is that a symptom to begin with? And how
Speaker 1: do you encourage patients to make sure that they are
Speaker 1: hydrated when people without MS have a hard time hydrating.
Speaker 2: Because they have to be so again, you bring up
Speaker 2: some really fantastic points. So first let's talk about why
Speaker 2: do we see bladder so frequently. There's certain parts of
Speaker 2: your brain that control bladder, and those could be affected
Speaker 2: in MS, but more commonly, the spinal cord has a
Speaker 2: lot of control over bladder, and when the spinal cord
Speaker 2: gets beat up, you can have difficulties of bladder. And
Speaker 2: there's actually different kinds of bladder problems. You can have
Speaker 2: a tight, little raquetball bladder where half a Coca cola
Speaker 2: and you got to sprint to the bathroom and you
Speaker 2: can't make it in time, God forbid. That's called overactive bladder.
Speaker 2: And then there's another problem where the outflow track the
Speaker 2: urethra is tight like a swizzle straw and you can't
Speaker 2: push the urine through it, and you have urinary retention.
Speaker 2: And then sometimes nature's too generous and you can actually
Speaker 2: have both seriously, seriously, and so I would say that
Speaker 2: bladder problems are very common in MS, and it can
Speaker 2: make it so someone doesn't want to leave their house.
Speaker 2: Now there's the devil's trick here, because the normal thinking
Speaker 2: person would rashly say, okay, well, if I have a
Speaker 2: risk of peeing myself, I'm simply not going to drink fluids.
Speaker 2: And that's actually dead wrong. And the reason it's dead
Speaker 2: wrong is if you have blood, you will make urine.
Speaker 2: And if you're not drinking water, that urine is uber
Speaker 2: concentrated and it's got a lot of metabolites and toxins,
Speaker 2: you know, from the blood, and that irritates the bladder wall.
Speaker 2: It's a bladder irritant. And if you have bacteria in
Speaker 2: the bladder and it's a really concentrated urine, that's a
Speaker 2: better place for bacteria to live. It's kind of like
Speaker 2: if you have like a cup of urine and you
Speaker 2: put it on the kitchen counter and left it there,
Speaker 2: it would grow a lot of bacteria. Now, if you're
Speaker 2: drinking water all the time, you're going to pee more,
Speaker 2: which continually flushes the bacteria out of your bladder and
Speaker 2: it reduces the concentrations of the irritants. And so it's
Speaker 2: actually counterintuitive, but people fare much much better when they're
Speaker 2: drinking more water.
Speaker 1: Ah, you know, I wanted to ask this about biological
Speaker 1: sex and assigned except birth and rates of MS, and
Speaker 1: a few people Katherine Lillly Hart, Jacqueline Church, and Amanda Butler,
Speaker 1: who has been an MS patient of fifteen years, wanted
Speaker 1: to know is it true that MS is more common
Speaker 1: in women than men? If so, why, Catherine wanted to
Speaker 1: know why is it more common in women but more
Speaker 1: deadly in men? Or is that flim flam? And Amanda,
Speaker 1: an MS patient, says, where is research at for pregnancy
Speaker 1: hormones and MS. They don't plan to have kids, but
Speaker 1: if we can use whatever helps get pregnant people's symptoms
Speaker 1: to remit, they're all in. So where are hormones in
Speaker 1: all this?
Speaker 2: This is a really, really great topic and for starters,
Speaker 2: MS is super complex, and it's not just the interplay
Speaker 2: of the immune system and the nervous system and hormones
Speaker 2: play a massive role in disease. I want to give
Speaker 2: a shout out to Riley Bouvet, who's a friend of
Speaker 2: mine at UCSF, who's done a lot of research in
Speaker 2: this area, and a lot of the answers I'm providing
Speaker 2: right now come from some of her work. So it's
Speaker 2: true that the onset of MS is three times more
Speaker 2: common in women than men. And I'll tell you something
Speaker 2: really disturbing. From the sixties to now, over the last
Speaker 2: several decades, the incidence of MS has been steadily climbing,
Speaker 2: but only in women, not in men, and we don't
Speaker 2: know why, and we're not exactly sure that it's related
Speaker 2: to hormones. I know that sounds like goofy pants, But yes,
Speaker 2: there's this sexual dimorphism that where women are more likely
Speaker 2: to develop most autoimmune conditions compared to men. But if
Speaker 2: you are a man with MS, it is true that
Speaker 2: you have a faster disease course until about fifty So
Speaker 2: let's unpack that. So it looks like estrogen has some
Speaker 2: protective effects in MS, and a good example of that
Speaker 2: is what we see during pregnancy. So when a woman
Speaker 2: is pregnant, the placenta makes insanely high levels of estriol,
Speaker 2: which is an estrogen, particularly in the second and third trimesters.
Speaker 2: And what we see clinically is that MS is really
Speaker 2: really quiet, typically during the second and third trimesters. And
Speaker 2: if you take it a step further, anytime a woman
Speaker 2: has a change in hormone levels, like even during the
Speaker 2: monthly menstrual cycle, you can see an uptick of disease activity. Well,
Speaker 2: most women enter perimenopause around age forty five, and estrogen
Speaker 2: levels start to fall at forty and so when the
Speaker 2: protective estrogen levels are now falling down, the rates that
Speaker 2: women in their fifties progress is the same as with men. Wow,
Speaker 2: And so that's freaky dicky. What I find is hormone
Speaker 2: replacement therapy tends to help with a lot of symptoms,
Speaker 2: and it looks like it might help slow some things
Speaker 2: down in MS. And so I think this topic in
Speaker 2: particular is underappreciated even amongst MS neurologists and needs to
Speaker 2: be looked at a lot more.
Speaker 1: Yeah, And we did an episode on ADHD and why
Speaker 1: so many women and people assign female at birth who
Speaker 1: go through perimenopause suddenly have these acute ADHD symptoms because
Speaker 1: without a lot of estrogen, you don't have the molecules
Speaker 1: you need, yes to go executive function, and so you're
Speaker 1: just like, why am I can't? So yeah, I think
Speaker 1: that that's all so super interesting.
Speaker 2: Yeah, I agree.
Speaker 1: And Jess Lynn and Lisa Nahuyas had great questions about research. Well,
Speaker 1: Jess's question was, there's been some research looking into the
Speaker 1: gut brain access and MS. Yes, do you think it
Speaker 1: could be possible to use a gut microbiome as a
Speaker 1: non invasive early detection method. What's the research on that
Speaker 1: right now?
Speaker 2: I love this question and it's an area that I'm
Speaker 2: particularly interested in. So just to level set real quick,
Speaker 2: there's a bunch of microbes that live inside of us.
Speaker 2: We probably have as many microbial cells in US as
Speaker 2: we do like human you carry it cells, and the
Speaker 2: vast majority of those bacteria live in our gut, particularly
Speaker 2: in the colon. It's populated with these colonies of bacteria,
Speaker 2: and that's referred to as the microbiome. Now, interestingly, for
Speaker 2: reasons that we don't understand, many people with autoimmune diseases,
Speaker 2: including people with MS, have something called dys biosis, which
Speaker 2: is a doctor term for you got jacked up microbes.
Speaker 2: You know, your gut bacteria is goofy and you don't
Speaker 2: have the right kind of gut bacteria. And there's a
Speaker 2: growing understanding that the microbiome interacts with your immune system
Speaker 2: for real, and so there's some really exciting research looking
Speaker 2: at trying to manipulate the microbiome with the goal of
Speaker 2: trying to help the immunity. Now, this is very, very fledgling.
Speaker 2: And I'm not saying like for a limited time only
Speaker 2: if you take probiotics, it'll slow your MS. That's not
Speaker 2: what I'm saying. But the data is really encouraging, and
Speaker 2: there's actually studies ongoing looking at fecal transplants.
Speaker 1: Love it. I can't wait for those my husbands.
Speaker 2: I'm like, get it, furiously.
Speaker 1: It's harder. It's harder to get your pooh accepted at
Speaker 1: a bank for that than it is to get into Harvard.
Speaker 2: It is hard.
Speaker 1: You have to have better pooh than a brain to
Speaker 1: get into Harvard.
Speaker 2: Yep, yep, No, you're exactly You're right. So I routinely
Speaker 2: recommend probotics for my patients for gut health. So I
Speaker 2: find that my patients that take probiotics and take prebiotic fiber,
Speaker 2: they have better regulation in their bowels, they have less diarrhea,
Speaker 2: they have less constellation, they have better gut motility, et cetera,
Speaker 2: et cetera. But the research looking at the potential to
Speaker 2: actually impact the immune response is super interesting, and it's
Speaker 2: certainly not primetime. It's a long way off, but I
Speaker 2: do think that there's a relationship there. I absolutely do.
Speaker 1: Now A twenty twenty one study called Combination of probiotics
Speaker 1: and natural compounds to treat multiple sclerosis via Warburg Effect
Speaker 1: published in the Advances Pharmaceutical Bulletin, states that the Warburg effect,
Speaker 1: which is a glycolysis action involved with the demyelination mechanism.
Speaker 1: It intensifies the activation of immune cells in the central
Speaker 1: nervous system and it provokes the inflammation process of the
Speaker 1: Mielen sheath and the infiltration of a bunch of immune
Speaker 1: cells rushing in can be inhibited by the therapy of
Speaker 1: probiotics and prebiotics, and in this review they recommend that
Speaker 1: the idea of that combinational therapy can do miracles in
Speaker 1: the treatment of MS in the future. Actually said that miracles,
Speaker 1: it's a strong word. Calm down, but it's promising, yes,
Speaker 1: and it continues it Lactobacillis, Bifidobacterium, and Streptococcus in MS
Speaker 1: patients switches their gut microbiota to modulate that anti inflammatory
Speaker 1: immune response. But it does concede that more research is
Speaker 1: needed now. One of the best ways to boost the microbiome,
Speaker 1: we asked an expert, is a healthy diet with lots
Speaker 1: of whole foods, and veggies. We have a whole episode
Speaker 1: on the gut biome that will link for you. But
Speaker 1: the TLDR is that your brain and your simmering intestines
Speaker 1: are good friends. Now, a few of you had questions
Speaker 1: about neuroanatomy and Gene Comstock first time question asker and
Speaker 1: Carly V wanted to know in Gene's words, I usually
Speaker 1: read that demolanation from MS curse primarily or only in
Speaker 1: the CNS. How often do we see the mylin sheats
Speaker 1: damage in the peripheral what's eating that mylin? And is
Speaker 1: there any way to just get it back?
Speaker 2: So this is a great series of questions, So just
Speaker 2: a little bit of like neuroanatomy type stuff. We have
Speaker 2: different cells that provide myelin in the central compartment compared
Speaker 2: to in the periphery. So in the central compartment we
Speaker 2: milinate the central nervous system nerves with oligodendrocytes, and in
Speaker 2: the peripheral nervous system we don't use oligodendrocytes. We use
Speaker 2: these Schwantza, these other cells. And the demyelination and exxonal
Speaker 2: damage that you see in the setting of multiple sclerosis
Speaker 2: is limited to the central nervous system, so brain, spinal, cord,
Speaker 2: optic nerves. There are different autoimmune conditions like gambreat or
Speaker 2: you know, AIDP CIDP, which can cause demyelination of the
Speaker 2: peripheral nerves. And what's interesting is, even though they sound
Speaker 2: rather similar in neurology, when we subdivide into our little areas,
Speaker 2: it's on the other side of the nervous system. So
Speaker 2: the guys and gals that manage autoimmune peripheral demylination and
Speaker 2: we never talk. And you can use an immunosuppressant to
Speaker 2: treat any autoimmune condition because you can dampen the immune response.
Speaker 2: But when you get into the details and some of
Speaker 2: the more like targeted therapies, they're rather specific for multiple sclerosis.
Speaker 2: Now the question of like why, Well, the thought is,
Speaker 2: and there's actually a really cool study that I recently
Speaker 2: looked at. When you develop EBV mono and you make
Speaker 2: an antibody which binds to one of the proteins on mono,
Speaker 2: that same antibody identifies one of the proteins on oligodendiscite
Speaker 2: mylin AH, and so that's that cross reactivity that we
Speaker 2: were talking about. So it's rather specific. We believe. Now
Speaker 2: you also touched on arguably one of the holy grails
Speaker 2: of MS therapies, which is remyelination.
Speaker 4: Yeah.
Speaker 2: So demyelination is when you strip the plastic coating off
Speaker 2: the wire. Remyelination is when you would put it back on.
Speaker 1: Yeah.
Speaker 2: And I hypothesize that there's three kinds of therapies that
Speaker 2: we need to cure MS. The first is a remyelinating agent,
Speaker 2: and we don't have one yet. We've been working on it.
Speaker 2: We have failed multiple times in trying to develop a
Speaker 2: remilinating agent. We've had some close ones where we were
Speaker 2: really excited and then fell on our noses. Yeah. So
Speaker 2: anti lingo, yep, and it didn't work out.
Speaker 1: So Erin explained to me that this was the twenty
Speaker 1: twenty trials of an antibody treatment called anti lingo one
Speaker 1: which inhibited lingo leading to mile in repair and test
Speaker 1: animals with a condition similar to MS. But unfortunately it
Speaker 1: was not successful in further trials. But right now, this
Speaker 1: very moment, we're sitting here listening to this. Maybe we're
Speaker 1: washing dishes, washing the car, maybe we're petting a goat,
Speaker 1: and scientists are shown up for work. They're walking in
Speaker 1: a building with a thermist full of coffee. They're making
Speaker 1: notes over a sale, which at lunch they're applying for
Speaker 1: grants after the kids go to bed, trying to figure
Speaker 1: out how to get that milin back around the neurons
Speaker 1: of folks with MS.
Speaker 2: The second thing that we need is a neuroprotective agent,
Speaker 2: and unfortunately we really don't have that yet. The third
Speaker 2: thing that we need, and we have in spades, is
Speaker 2: specific anti inflammatories. And I don't mean anti inflammatory like
Speaker 2: an aspirin, I mean central nervous system anti inflammatories like
Speaker 2: you mentioned B cell depleters like okruvias, okrlism. So this
Speaker 2: is a huge area of interest in MS research and
Speaker 2: in specific in like MS therapeutics. We're not really working
Speaker 2: so much anymore on like the next anti inflammatory because
Speaker 2: we have those. A lot of the efforts are instead
Speaker 2: being placed on some of these other areas, which is
Speaker 2: appropriate and really really exciting.
Speaker 1: What about we've seen like in Selma Blair's case, she
Speaker 1: was public about going through essentially like a chemo to
Speaker 1: destroy her immune system and build a back up.
Speaker 4: Ye think the.
Speaker 1: Options ran out.
Speaker 3: The stem cell transplant is the thing that's gonna help
Speaker 3: me if anything.
Speaker 1: Will Are we seeing any success with that? It doesn't
Speaker 1: seem like it was a cure all, a magic cure all.
Speaker 1: But how much research is going on in that?
Speaker 2: This is a very important topic. And so what you're
Speaker 2: talking about is a stem cell transplant. And so we
Speaker 2: talk about an atologous haematopoetic stem cell transplant. And it's
Speaker 2: a very sexy concept. I'm going to swap out my
Speaker 2: bone marrow and then I won't have an autoimmune condition.
Speaker 2: So a couple things. Number One, it's not a drug,
Speaker 2: it's a procedure. Number Two, it's a very morbid procedure.
Speaker 2: It's a Racconian maneuver where you take the person and
Speaker 2: you make them make stem cells, and you put them
Speaker 2: on ice. Then you murder them. You give them lethal
Speaker 2: doses of chemotherapy, and you remove their immune system, like
Speaker 2: John Travoll to Boy in the Bubble where they have
Speaker 2: no immune system and they would succumb to a cold.
Speaker 2: But before they die, god forbid, you give them back
Speaker 2: the immune system the stem cells. Now what's interesting is
Speaker 2: the stem cells don't help them. The stem cells prevent
Speaker 2: you from dying. The ablation of the immune system is
Speaker 2: what helps the MS, and this has been studied increasingly.
Speaker 2: There's huge efforts, gigantic efforts in Italy, gigantic efforts in Canada.
Speaker 2: There's ongoing studies in the United States looking at stem
Speaker 2: cell transplantation, mostly targeting really severe cases of multiple scrosis.
Speaker 2: And it's not primetime in my opinion. When I look
Speaker 2: at some of the most effective medicines to treat MS,
Speaker 2: they in some studies fare as well as stem cell transplantation,
Speaker 2: sometimes maybe a little less, but the safety profiles are
Speaker 2: much better, and so I don't feel like the answer
Speaker 2: to MS is stem cell transplantation. Also point out two
Speaker 2: more things that when someone gets a stem cell transplant,
Speaker 2: it accelerates the brain shrinkage, the brain atrophy because of
Speaker 2: the intense chemo. And if you follow these people out,
Speaker 2: it's not like you cure their MS. They can still
Speaker 2: go on and have progression some years later, so it's
Speaker 2: not a cure all. I have received patients that have
Speaker 2: participated in stem cell tourism, something that I don't recommend,
Speaker 2: where they go to an exotic place like Mexico or
Speaker 2: India or Chicago and they get their bone marrow swapped out.
Speaker 2: And I can tell you that for some of the patients,
Speaker 2: it's been really really transformative, and many of the patients
Speaker 2: they've gone on to have disease activity and we've gone
Speaker 2: back on medicines. Now.
Speaker 1: In the four or so years since Selma Blair's transplant
Speaker 1: of her own cells, she has said that she has
Speaker 1: experienced a relapse and then when on a medication called
Speaker 1: Mavenclad for relapsing remitting MS, as well as some twice
Speaker 1: monthly immunoglobulin transfusions. So some neurologists caution not to hang
Speaker 1: too much hope on her very public experience, as what
Speaker 1: she calls a remission in her symptoms could be due
Speaker 1: to a variety of therapeutic factors and the so called
Speaker 1: rebooting of the immune system via chemo, and the transplant
Speaker 1: is described as a grueling process with no guarantees.
Speaker 2: So it's it's a very hot topic and I would
Speaker 2: simply ask someone listening, if you're going to consider a
Speaker 2: stem cell transplant, you need to be talking to a
Speaker 2: legit MS neurologist. And it's not just something where you
Speaker 2: book a trip to India, get it done and come back.
Speaker 1: Right right and in therapies to help manage symptoms Gene
Speaker 1: Kelly wanted to broach the topic of Goanza. They had
Speaker 1: a friend who used marijuana medically for her MS and
Speaker 1: said it helped her leave a lot of her symptoms
Speaker 1: day to day, more than any medication she'd been prescribed.
Speaker 1: Has there been any research into treating MS with marijuana?
Speaker 1: If so, is it supported, does it work? Do we
Speaker 1: know why it works?
Speaker 2: Excellent? Excellent topic. And I don't think that we could
Speaker 2: possibly have a discussion about MS and the modern era
Speaker 2: without talking about weed. It's like literally impossible, and so,
Speaker 2: you know, shocking though this late in the discussion, it
Speaker 2: always comes out right. So to share with you, like
Speaker 2: my little journey, I'm a medical marijuana recommender in the
Speaker 2: state of Ohio, and Ohio we don't have recreational cannabis available,
Speaker 2: but we do have it through certain medical conditions, top
Speaker 2: would be MS. And so when this first started to
Speaker 2: pick up, this concept of using cannabis medically approved, I
Speaker 2: looked at the data and I immediately decided this is
Speaker 2: BS because the data is really really poor, like the
Speaker 2: quality of the research is crap. And I'm a nerd,
Speaker 2: and I said, okay, well, you know, I don't ascribe
Speaker 2: to this and so at first I said no. Then
Speaker 2: something really weird happened. I had a dear patient of
Speaker 2: mine in her seventies who is a teetotaler, who said,
Speaker 2: in confidence, Doctor B my grandson. He gave me a doobie,
Speaker 2: and if I smoke the doobie, I don't need to
Speaker 2: do medicine. I don't have spasticity. And I thought that's weird.
Speaker 2: And then I had another like seventy something tell me
Speaker 2: the exact same thing. And so over several months, they
Speaker 2: all happened to be like older women were confiding in
Speaker 2: me that they were sleeping better through the night, they
Speaker 2: weren't having spasticity, they weren't having pain all because they
Speaker 2: were using cannabis. And so I went back to the
Speaker 2: literature and I looked at it again, and I hadn't
Speaker 2: gotten any better, right, But I decided that I would
Speaker 2: believe my patients because I don't think they all got
Speaker 2: into like a sewing circle and said, let's all ride.
Speaker 1: To Er and all the same way.
Speaker 2: So I went through the process of becoming a medical
Speaker 2: marijuana recommender. And now I've been recommending for several years,
Speaker 2: and I feel very strongly a couple things number one,
Speaker 2: it doesn't slow down MS, So I'm not recommending that
Speaker 2: you use cannabis instead of disease modification. But as you
Speaker 2: pointed out, as it relates to symptoms, there are certain
Speaker 2: symptoms that are very well treated by cannabis. For example,
Speaker 2: spasticity in MS, which is very common in MS, is
Speaker 2: probably one of the most robust symptoms that have been
Speaker 2: studied and works very well. So you can use cannabinoids
Speaker 2: to help with spasticity, neuropathic pain.
Speaker 1: How do they work? Are they anti inflammatory? What are
Speaker 1: they doing in there?
Speaker 2: So we don't know. I mean, I can tell you,
Speaker 2: like the party line about CB one receptors and CB
Speaker 2: two receptors, but we don't really know, to be honest.
Speaker 2: And the studies that were done our crappy quality studies.
Speaker 2: I mean, when you look at him, you're like, really
Speaker 2: did high school kids come up with this? But what
Speaker 2: I can say is in clinic it works. I mean
Speaker 2: I see it work like routinely. Neuropathic pain it works,
Speaker 2: insomnia it works, anxiety it works. And one of my
Speaker 2: favorites is one of my dear patients tells me his
Speaker 2: favorite use of cannabis is for irritable situations and I said, well,
Speaker 2: what do you mean. I thought he meant like in laws.
Speaker 2: That's not what he meant. And he gave an example.
Speaker 2: The guy's a cyclist. Now he's blind, but he gets
Speaker 2: on a stationary bike like a pepoton. He'll do it
Speaker 2: for hours. But he had a problem because when he
Speaker 2: would do it for a while, his left leg would
Speaker 2: literally start burning and he would have to stop because
Speaker 2: it hurt. What he found was if he uses cannabis
Speaker 2: before he rides, it still burns. He just doesn't care.
Speaker 2: Oh my god. And I said, wait a second, So
Speaker 2: you mean it makes the pain better. He said, absolutely not.
Speaker 2: It does not make the pain better. I just don't
Speaker 2: care about the pain. So now cannabis does not Cannabis
Speaker 2: does not help with cognition. It does not help with
Speaker 2: fatigue in my experience. It does not help with bladder,
Speaker 2: it does not help with balance, and like any chemical,
Speaker 2: there's a side effect profile that you don't want to ignore.
Speaker 2: But I have found that it's a really great tool
Speaker 2: for a lot of patients, for a lot of different things.
Speaker 1: Please enjoy. The twenty twenty two paper in the journal
Speaker 1: Life titled the Efficacy of Cannabis on multiple sclerosis Related Symptoms,
Speaker 1: which reports that oral cannabis is mainly used for treating
Speaker 1: patients with MS and has positive effects on treating the
Speaker 1: most common symptoms of MS, such as pain and spasticity,
Speaker 1: and the International Journal of MS Care published the study
Speaker 1: Multiple Sclerosis and Use of Medical Cannabis, a retrospective review
Speaker 1: of a neurology outpatient population, which stated that patients experienced
Speaker 1: extensive MS symptom improvement after initiation of medical cannabis, with
Speaker 1: alleviation of pain reported by seventy two percent of patients
Speaker 1: and spasticity reduction by forty eight percent of patients and
Speaker 1: improvement in sleep in forty percent of patients. So, Mom,
Speaker 1: are you listening? Perhaps we'll get you some now. Which
Speaker 1: is better for pain? The CBD or the THHC in marijuana?
Speaker 1: Researchers seem to agree that THHC has a larger effect
Speaker 1: on pain reception and CBD, which is the non psychoactive compound,
Speaker 1: can help pain at the source. There was one twenty
Speaker 1: twenty four study titled Cannabidal and Brain Function, Current Knowledge
Speaker 1: and Future Perspectives in the journal Frontiers and Pharmacology, and
Speaker 1: it reported that the endocannabinoid system in our bodies controls
Speaker 1: most bodily functions, including sleep, temperature, pain, reception, inflammatory and
Speaker 1: immune responses, learning in memory, processing emotions, and eating, making
Speaker 1: it the subject of most drug development research. And this
Speaker 1: study stated that although the molecular pathways and mechanisms through
Speaker 1: which CBD acts have not been fully established yet, they
Speaker 1: don't totally know what's going on. It suggested that CBD
Speaker 1: from marijuana can directly interact with different receptor dependent and
Speaker 1: independent mechanisms which contribute to different therapeutic applications. So don't
Speaker 1: know how it works, but it works, and your doctor
Speaker 1: probably knows that. So go ahead and.
Speaker 2: Ask all right, all right, all right.
Speaker 1: And now that you can go to a dispensary and
Speaker 1: look at a display case and say, I'd like two
Speaker 1: point five milligrams of kinnabinoids versus this much TFC like
Speaker 1: what kind of dosages are you seeing patients using?
Speaker 2: So what I tell people is you need three things
Speaker 2: to start. The most important thing is a notebook and
Speaker 2: a pen, because the way that your body responds is
Speaker 2: going to be different than your neighbor or your twin
Speaker 2: or someone else with MS. The second thing is I
Speaker 2: typically ask people to pick up two of three things.
Speaker 2: A tin of gummies, which is inedible and here in
Speaker 2: the Great State of Ohio they're all ten milligram gummies.
Speaker 2: That's the way they come. And then either a vape
Speaker 2: pen or a tincture. So I don't recommend lighting cannabis
Speaker 2: on fire and smoking and sucking in the smoke because
Speaker 2: it's super prone inflammatory like tobacco's prone flammatory. But vaping
Speaker 2: you're heating it up below the level of combustion, and
Speaker 2: whereas it's probably still a little bit prone inflammatory, I
Speaker 2: think a lot less. And the advantage of vaping is
Speaker 2: it's a very very fast onset. So if you have
Speaker 2: a Charlie Horse that's dropped you to your knees, eating
Speaker 2: an edible and waiting forty five minutes isn't going to work.
Speaker 2: You can hit a vate pen and it can work
Speaker 2: within minutes.
Speaker 1: Oh got it?
Speaker 4: Okay.
Speaker 2: Now I have some patients that would never ever want
Speaker 2: to breathe in anything, even vapor, and so tincture, which
Speaker 2: is an old apothecary term. You have a bottle of
Speaker 2: liquid cannabis and you draw it up into a dropper
Speaker 2: and you put it under your tongue and there's these
Speaker 2: giant blood vessels, so about fifteen to twenty five percent
Speaker 2: gets absorbed very quickly into the bloodstream and it will
Speaker 2: work almost as fast as a vape pen. And then
Speaker 2: you swallow the rest of it and the rest of
Speaker 2: it kicks in just like an edible, and about forty
Speaker 2: five minutes to an hour. Now, the edibles I typically
Speaker 2: ask people Particut, people that are maybe virginal and that
Speaker 2: you know, they haven't had a great time in college
Speaker 2: or whatnot. You take the edible and you cut it
Speaker 2: in half, so you got five milligrams, and I tell them,
Speaker 2: you know, towards the end of their after dinner, take
Speaker 2: an edible and then just do your normal routine. Don't
Speaker 2: sit around like scared looking in the mirror to see
Speaker 2: if you grow hands. You know, do your thing and
Speaker 2: don't redose. Right, that's very important, And what I want
Speaker 2: to find out is when did it kick in, when
Speaker 2: did it peak, when did it go away? What were
Speaker 2: the benefits and side effects? And if you can answer
Speaker 2: those questions, I can help you dial it in like
Speaker 2: in the other medicine. And if five milligrams doesn't work,
Speaker 2: you don't want to be like a twenty year old boy,
Speaker 2: and then take another five, then another ten, you know,
Speaker 2: and pretty soon you're gonna have a really bad evening. Yeah,
Speaker 2: And so you keep notes in over a couple of days,
Speaker 2: we can figure it out. So we use edibles to
Speaker 2: help with insomnia, to improve sleep, to help pain and
Speaker 2: spasticity overnight in a low dose during the day, can
Speaker 2: help with anxiety. And so we can use different routes
Speaker 2: of administration of cannabinoids to really target symptoms the same
Speaker 2: way that we do with Lyrica or Naranton or baklafin.
Speaker 2: I mean, these drugs that I just listed, they have
Speaker 2: side effects, and they have tolerance and other things that
Speaker 2: are also important to grapple with. And so I just
Speaker 2: view this as another tool to help us navigate through,
Speaker 2: you know, helping someone live their best life. I'll tell
Speaker 2: you a quick funny story though. Years ago, before there
Speaker 2: was medical cannabis in the United States, I was at
Speaker 2: an international MS feeding and a bunch of investigators We're
Speaker 2: all having coffee or whatnot, and I was talking to
Speaker 2: this MS doctor from Israel and he said, in Israel
Speaker 2: we give patients with MS rolled joints for free. And
Speaker 2: I said, really, why? And he looked at me like
Speaker 2: I was an idiot, and he said, what do you
Speaker 2: mean why? Because it sucks to have a mess and
Speaker 2: that makes them feel better. And honestly, I really couldn't
Speaker 2: argue with them, you know, like I was like, okay,
Speaker 2: and I have some patients of this one young man,
Speaker 2: he was adorable. He said, doctor B can I be
Speaker 2: honest with you? I just like to get high to
Speaker 2: being honest, you know, I mean, okay, that was really funny.
Speaker 1: Think yeah, do you have any advice in general for
Speaker 1: people who.
Speaker 5: Have autoimmune disease or anything that you feel like you
Speaker 5: wish if you could get on a stelp box, you
Speaker 5: wish people with autoimmune conditions new or something they could
Speaker 5: do to feel better, or things that they could ask
Speaker 5: their doctors.
Speaker 2: I think there are two things that I would bring
Speaker 2: to the forefront. Number one is you need to cultivate
Speaker 2: a sense of self advocacy and you need to be
Speaker 2: selfish so you live one time. You have one central
Speaker 2: nervous system and it's your life, it's your brain. And
Speaker 2: just because the doctor's not bothered by it doesn't make
Speaker 2: it okay. And so you know, we all need advocates
Speaker 2: and the best advocate to cultivate in medicine is a
Speaker 2: self advocacy. So we have to fight against, you know,
Speaker 2: medical gas lighting, and we have to fight against therapeutic inertia.
Speaker 2: And I need people to be selfish and say I'm
Speaker 2: not going to minimize my symptoms and hide them because
Speaker 2: I want to. I don't want to appel like a
Speaker 2: bad like you got to come in there and be like, look, man,
Speaker 2: I can't an erection. It's not okay, you know, like
Speaker 2: I took your viagora doesn't work. What else you got?
Speaker 2: I mean, that's an example you want to be a
Speaker 2: self advocate, and I really think that's very, very important.
Speaker 2: Another thing that I think can't be appreciated enough, and
Speaker 2: this is a ubiquitous comment for anyone with the autoimune condition,
Speaker 2: is the critical importance of a healthy lifestyle. And so
Speaker 2: adhering to a healthy diet, exercising is part of your lifestyle,
Speaker 2: not smoking stuff, participating in daily mindfulness. These are things
Speaker 2: that would help anyone, and they particularly are helpful, I
Speaker 2: think in the setting of autoimmunity, and unfortunately, there's a
Speaker 2: cadre of patients that they just want to pill for
Speaker 2: the ill, and that's all they want to do, and
Speaker 2: it's really a fool of a doctor who thinks that
Speaker 2: they can make a chronic problem like an autoimmune condition
Speaker 2: better just with the medicine.
Speaker 1: And we also have a Dolerology episode with doctor Rachel's Oftness,
Speaker 1: which is all about factors that affect how we perceive
Speaker 1: pain levels, from the biological to the psycho and the
Speaker 1: social causes how we perceive pain, and we're going to
Speaker 1: link it in the show notes, along with another great
Speaker 1: episode with Choules Hots called Saluchenology about why human beings
Speaker 1: need each other and leisure activities for the health of
Speaker 1: their brains and bodies. They're both fascinating episodes, and.
Speaker 2: So I think if we're going to try to live
Speaker 2: our very best lives despite any autoimmune condition, we have
Speaker 2: to approach it from a holistic standpoint. I want people
Speaker 2: to be very demanding. These are the symptoms that bother me,
Speaker 2: and doctor, if you can't help me, send me to
Speaker 2: someone who can. And you know, if you're drinking to
Speaker 2: excess and smoking a half pack of cigarettes and you're
Speaker 2: complaining that your neuropathic pain isn't responding, I think that
Speaker 2: we have to look at all options, including some of
Speaker 2: your behaviors. So those will be the two things that
Speaker 2: I really think are important.
Speaker 1: And did you I know that you mentioned mindfulness is
Speaker 1: one of the five. Do you want to list those
Speaker 1: out so that we have them kind of in a
Speaker 1: condensed version.
Speaker 2: Sure? Yeah, for sure. So you know, I will tell
Speaker 2: people that I want them to be five for five
Speaker 2: and they're fighting against MS and it's because there's five
Speaker 2: things that I'm aware of that the disease down and
Speaker 2: can improve outcomes. So number one is to exercise as
Speaker 2: part of your lifestyle. And I want to point out
Speaker 2: that when I say part of your lifestyle, what that
Speaker 2: means to me is you don't get a reward when
Speaker 2: you do it, and you're not punished when you don't
Speaker 2: do it. So, for example, I have a lifestyle of showering.
Speaker 2: I don't tweet out about it like, oh my god,
Speaker 2: it take a shower, like that's not a thing, right,
Speaker 2: And if I didn't have a chance to shower in
Speaker 2: the morning, I just do it later, right. And I
Speaker 2: need people to embrace exercise like that as part of
Speaker 2: their lifestyle.
Speaker 1: That's so smart because there's so many of us who
Speaker 1: are like, oh, I have to do exercises a punishment
Speaker 1: for eating a brownie, or I can only exercise when
Speaker 1: I make sure I take care of everyone else in
Speaker 1: the house and everything on my to do list is done.
Speaker 1: Then I can take some time to go for a walk, you.
Speaker 2: Know, exactly exactly, and this needs to be part of
Speaker 2: what you do right. So the second thing is to
Speaker 2: eat smart in the setting of MS. That starts with
Speaker 2: vitamin de suppmentation and water, but it becomes a really
Speaker 2: large conversation. You know, we get into the amount of
Speaker 2: protein you need to eat, in the amount of fiber,
Speaker 2: and you know, it becomes a big conversation. But I
Speaker 2: think we want to start and meet someone where they are,
Speaker 2: and sometimes that just means stop snacking right and stop
Speaker 2: eating like sugar retreats. So eating smart is one of
Speaker 2: those five things.
Speaker 1: Yeah.
Speaker 2: The third thing is to not smoke stuff. And as
Speaker 2: I mentioned, if you smoke, you double your wrist to
Speaker 2: develop m mess, and if you have a MESS, you
Speaker 2: can speed it up by fifty percent. So not smoking
Speaker 2: is one of the biggest impactful things you can do
Speaker 2: to slow the disease down. Now, behind that is a
Speaker 2: really big conversation about other cardiovascular risk factors. But not
Speaker 2: smoking stuff is one of them. And I say smoking
Speaker 2: stuff because I think smoking cannabis is for very similar reasons,
Speaker 2: not so good for you because of the pro inflammatory
Speaker 2: nature of like sucking in carbon based smoke. Now number
Speaker 2: four is the daily practice of mindfulness. And there's so
Speaker 2: many different ways to be mindful, and we just need
Speaker 2: to find one that doesn't suck, and we need to
Speaker 2: just try to practice doing it. So you know, I
Speaker 2: shared with you that I have a lifestyle of showering.
Speaker 2: In the pandemic, I added something. When I'm done showering,
Speaker 2: I sit in a shower, cross my legs, I close
Speaker 2: my eyes, and I just breathe. And at first I
Speaker 2: sucked at it, like I would be like Boster, get up,
Speaker 2: what are you doing? And I learned to just let
Speaker 2: all the thoughts go and I'll spend five minutes, ten
Speaker 2: minutes just breathing, and it's transformative. It's one of the
Speaker 2: best parts of my day, believe it or not. Now,
Speaker 2: the fifth thing is to take the most effective DMT
Speaker 2: possible and make sure it's working. And I want to
Speaker 2: read the most effective DMT that you're comfortable taking and
Speaker 2: make sure it's working.
Speaker 1: And what exactly is the DMT.
Speaker 2: It's a disease modifying therapy.
Speaker 1: So I thought you meant like this stuff where you
Speaker 1: see little shiny aliens like you smoke it on the beach.
Speaker 2: Oh my bad. You're like, oh, Aaron, that's a very note.
Speaker 1: So I was like, holy shit, really yeah?
Speaker 2: No, What I mean is I want you on the
Speaker 2: most effective disease modifying therapy that you're comfortable taking, Okay,
Speaker 2: and I will to make sure that it's working.
Speaker 1: So we have a psychedelics episode all about the therapeutic
Speaker 1: effects of hallucinogens with a highly respected researcher, doctor Charles
Speaker 1: Grove of UCLA. But DMT aka die methyl trip to
Speaker 1: mean occurs naturally in plants and animals, including you, and
Speaker 1: taking it can produce a short halloocine pnogenic experience and
Speaker 1: this Famed author and ethnobotanist and psychedelics advocate Terence mckennat
Speaker 1: described these commonly seen benevolent beings that come chill out
Speaker 1: on a DMT trip as quote self transforming machine elves.
Speaker 1: Apparently a lot of people see them. I have not
Speaker 1: done it.
Speaker 2: Now.
Speaker 1: When Aaron mentioned staying faithful to your DMT, I was like,
Speaker 1: I'm sorry, pardon, but it turns out the human disease
Speaker 1: modifying therapies like checkups and medicines now one new DMT
Speaker 1: that has emerged since this recording. Well, I'm just gonna
Speaker 1: let Aaron tell you via this voice note, there.
Speaker 2: Are a couple of things going on right now in
Speaker 2: the MS space which really have me jazzed. Amongst the
Speaker 2: biggest are some of the developments in the brutine tire
Speaker 2: scene kinase or BTK inhibitor space. We studied one BTK
Speaker 2: inhibitor called tilbrutine in a non relapsing secondary progressive MS
Speaker 2: trial called the Hercules trial, and a very proud at
Speaker 2: the Bost Center. We enrolled a bunch of patients into
Speaker 2: this trial, and what's exciting is that it was a
Speaker 2: very successful result. Compared to placebo. The patients on the
Speaker 2: BTC inhibitor slowed progression by twenty nine percent, which is
Speaker 2: a really big deal. This medication has been fast tracked
Speaker 2: at the American FDA and we believe that probably comes
Speaker 2: September timeframe, we may have the first fdapproof therapy for
Speaker 2: non relapsing secondary progressive MS. What's even more exciting is
Speaker 2: that the same molecule, The totbriutant molecule is being studied
Speaker 2: in primary progressive ms and a clinical trial called the
Speaker 2: Perseus trial. Now we should be getting a readout for
Speaker 2: Perseus sometime later this year, and our fingers are crossed.
Speaker 2: I'll cross my fingers for it.
Speaker 1: And what about you know, you've been studying this for
Speaker 1: a long time, You've wanted to do this since you're twelve,
Speaker 1: and kayle c Lisa who has wanted to know, in
Speaker 1: Lisa's words, how close is research getting to a cure
Speaker 1: or what are the next steps taken to get there?
Speaker 1: How encouraged are you? How crestfallen are you?
Speaker 2: My honest answer is I don't think that we're going
Speaker 2: to see a cure in my lifetime. Yeah, And I'm
Speaker 2: not saying that to be a Debbie downer. The reason
Speaker 2: I say that is our understanding of the immune system
Speaker 2: remains fledgling. We, for example, are just now starting to
Speaker 2: be able to impact the innate immune response, which is
Speaker 2: bigger than the adaptive immune response. So most of our
Speaker 2: drugs that we've developed affect B and T cells.
Speaker 1: A B and T cell side note, I had never
Speaker 1: heard of this. Turns out it's medical lingo for B
Speaker 1: cells and T cells, which are both lymphocytes and major
Speaker 1: players in your immune system.
Speaker 2: There's another part of our immune system which is way
Speaker 2: bigger than that, and we're just now studying drugs that
Speaker 2: can get at it. And so I think, given our
Speaker 2: meager understanding of the immune system, which is really kind
Speaker 2: of one of the last frontiers, I think it's unrealistic
Speaker 2: that we're going to cure MS in the near term. Now,
Speaker 2: I want to be really clear that in medicine we
Speaker 2: here nearly nothing. So we don't here high blood pressure.
Speaker 2: We treat high blood pressure, you know. So I have
Speaker 2: high cholesterol, thanks Mom and Dad, and I take a
Speaker 2: medicine to lower my cholesterol. It's not cured. If I
Speaker 2: stop the medicine, my cholesterol goes up, and therefore my
Speaker 2: risk of heart attack and stroke goes up. But we
Speaker 2: can treat high cholesterol, and in the modern era as
Speaker 2: we talk today, we can make MS boring. And that's
Speaker 2: a big deal. You know. If I use a different
Speaker 2: autoimmune disease as an example, diabetes used to be a
Speaker 2: death sentence. So pre insulin, if someone had type one diabetes,
Speaker 2: they would die because their kidneys would fail after thirty
Speaker 2: some years. Nowadays, you don't know that your girlfriend has
Speaker 2: diabetes unless you eat cake with her and she happens
Speaker 2: to get out her little insulin pen and inject herself.
Speaker 2: So what are you doing, say, Oh, I'm giving myself
Speaker 2: my islain. And so that doesn't make it easy to
Speaker 2: have diabetes. It's actually very hard. But we can make
Speaker 2: diabetes boring. And with the earliest applications of highly effective medicines,
Speaker 2: with attention to some of the stuff we've been talking about,
Speaker 2: we can sometimes make MS really boring. And I'm very
Speaker 2: proud of that, and I think that I expect that
Speaker 2: over the next ten twenty years it's going to get
Speaker 2: more and more boring where someone can live their life
Speaker 2: and then MS doesn't get to pick what happens.
Speaker 1: There's something Obviously a lot about your job probably looks,
Speaker 1: but I always ask this at the end, what's the
Speaker 1: hardest part about your job? What sucks?
Speaker 2: So the only way that I know how to do
Speaker 2: this is to walk with a family. And I've learned
Speaker 2: that I have to grieve losses with someone. And you know,
Speaker 2: losing your ability to wear high house shoes is a loss.
Speaker 2: You know, this is a disease that sometimes we can
Speaker 2: wrangle to the ground, but we can't cure it, and
Speaker 2: it can progress. And so whereas I grieve losses and
Speaker 2: I celebrate successes, they're typically time locked. And so sometimes
Speaker 2: the disease can get away from us and I watch
Speaker 2: someone who I have grown to love get worse. It hurts,
Speaker 2: you know. Sometimes I do a really good job and
Speaker 2: we get lucky and we make the disease boring. Sometimes
Speaker 2: MS laughs at me and thinks I'm a joke. And
Speaker 2: watching a young person develop chronic condition is a really
Speaker 2: hard thing. It's a really really hard thing to experience.
Speaker 2: And so that's really hard. That's a tough thing. But
Speaker 2: that's the only way I know how to do it
Speaker 2: is you know, I cry a lot in clinic with patients,
Speaker 2: and I think that's fair because the stuff they're doing
Speaker 2: with sucks and it makes you want to cry.
Speaker 1: What advice do you give someone who's newly diagnosed, who
Speaker 1: has questions about will is this going to kill me?
Speaker 1: And how much longer do I have?
Speaker 2: So in the modern era, with the earliest application in
Speaker 2: these medicines, we can expect a normal life expectancy, and
Speaker 2: if we play our cards right a darn near normal
Speaker 2: life quality. So I want you to have more sex,
Speaker 2: climb more mountains, I want you to work harder, I
Speaker 2: want you to have more kids. I want all the things,
Speaker 2: and I don't want MS to make decisions for you.
Speaker 1: How about accommodations that people might need, any any advice
Speaker 1: on how to advocate for yourself if you do need accommodations.
Speaker 2: So, I think one of the things that we have
Speaker 2: to do is we have to think about what's the goal.
Speaker 2: So I'll give you an example. The goal is not
Speaker 2: to park at the back of Walmart and walk the
Speaker 2: whole store. The goal is to obtain groceries. And so
Speaker 2: if you identify the goal as obtain groceries, I care
Speaker 2: not as much about how you get the groceries. And
Speaker 2: so if you are having an awesome sauce day and
Speaker 2: you can park at the back of the parking lot
Speaker 2: and do all the things and do all the walking,
Speaker 2: good job. But if today's the day that you can't
Speaker 2: do that, have someone drop you off at the front,
Speaker 2: take a cart, or if it's really not physically possible
Speaker 2: to do that, then order groceries and have them deliver
Speaker 2: to your house. Because in this example, the goal is
Speaker 2: to obtain groceries.
Speaker 1: And ask someone with MS, such as fancy Nancy about
Speaker 1: bright fluorescent lights and big stores and just the hurricane
Speaker 1: of sounds and people and stimuli, and it's way easier
Speaker 1: to understand why grocery deliver can be a medical need.
Speaker 1: And I wandered into on forum for folks with MS,
Speaker 1: and I saw the comment hell will be lit with
Speaker 1: fluorescent lights. And some folks there are even recommended pink
Speaker 1: or amber tinted sunglasses indoors or looking for ones labeled
Speaker 1: for migraine sufferers, so you can look cool and you
Speaker 1: can feel better, win win, and.
Speaker 2: So you know the workplace. One of the things that
Speaker 2: I think we do a very poor job of in
Speaker 2: the United States is vocational adaptations and accommodations. And I
Speaker 2: think the Family Medical Leave Act is a really, really
Speaker 2: important piece of legislation, and I think most families impact
Speaker 2: ims benefit from signing up if they qualify for FMLA.
Speaker 2: And one of the things that's not always appreciated about
Speaker 2: FMLA is it's not just about missing work to go
Speaker 2: to a doctor's appointment. It's about demanding accommodations. So I
Speaker 2: have patients, for example, that will work in a factory
Speaker 2: where they're at a machine and they're doing a task.
Speaker 2: And if I can write an accommodation where they can sit,
Speaker 2: they can keep doing it. Now. They can't do it
Speaker 2: standing any longer, but they can do it just fine
Speaker 2: if they're sitting. Or something as simple as a teacher
Speaker 2: who has classrooms where they have to go up and
Speaker 2: down flights of stairs not the best of ideas. The
Speaker 2: goal is not to teach on multiple levels of the school.
Speaker 2: The goal is to teach, and so writing an accommodation
Speaker 2: and saying look like keep them on the first floor,
Speaker 2: Gosh darn it. Those kind of accommodations can allow someone
Speaker 2: to be successful. And it's been my experience that people
Speaker 2: impacted BIMs who have to leave the workforce or can't
Speaker 2: be involved in school anymore, they don't fare as well.
Speaker 2: And I think just psychologically, they have a lot more
Speaker 2: time to think about the disease. If you're proverbally flipping
Speaker 2: burgers for eight hours, you really have to concentrate on
Speaker 2: flipping burgers or you burn yourself. And that's a mindful
Speaker 2: activity and I think that's healthy. And so I think
Speaker 2: searching out accommodations and again going back to self advocacy
Speaker 2: and being selfish is paramount to success.
Speaker 1: Now, what about because I know that you're so passionate
Speaker 1: about your work obviously, but what do you love? What
Speaker 1: keeps you going? Like, what's your favorite part of your job?
Speaker 2: I help people by request, So by request, So for example,
Speaker 2: if I said, hey, stop smoking, you'll show me your
Speaker 2: middle finger. But if I say, if you want to smoke, smoke,
Speaker 2: But I just need to educate you that smoking speeds
Speaker 2: up MS. And so I really believe that education is
Speaker 2: paramount to success in multiple sclerosis. You know, the reason
Speaker 2: that I'm so passionate about my YouTube channel is it's
Speaker 2: just a tool for educating where if I have something
Speaker 2: that I want to convey, I can try to create
Speaker 2: an easily digestible snippet that then somebody can watch at
Speaker 2: their leisure. And so in my background, I grew up
Speaker 2: where we would talk about having a mitzvah. You know,
Speaker 2: a mitzvah is a good deed, like if you walk
Speaker 2: an old lady across the street, then you're a good boy,
Speaker 2: and you did a mitzvah. And so when I make
Speaker 2: a YouTube video and then later I find out that
Speaker 2: someone in another part of the world they watched it
Speaker 2: and they benefited from it. That fills my buck. I mean,
Speaker 2: it's such a joyous moment for me. My family didn't
Speaker 2: have that, and so to be able to offer that
Speaker 2: to someone who is maybe in New Zealand, you know
Speaker 2: that just it means the world to me. And so
Speaker 2: when I can help someone in my clinic, or when
Speaker 2: I can help someone through even through social media, it
Speaker 2: means a lot to me as a human being, and
Speaker 2: that drives me to keep doing what I'm doing.
Speaker 1: I'm sure your family's so proud. They must just what
Speaker 1: a mention.
Speaker 2: Thanks Now, I'll tell my mom he said that.
Speaker 1: So ask passionate people some impassioned questions and then you
Speaker 1: can pass on the knowledge and you can enjoy way
Speaker 1: more of doctor Boster on his YouTube channel Aaron Boster MD,
Speaker 1: which will link in the show notes alongside his charity
Speaker 1: of choice. Alongside his charity of choice which is MS
Speaker 1: Views and News, and there are many more links to
Speaker 1: studies and resources that we posted at aliwar dot com
Speaker 1: slash ologies slash neuropatho immunology, which we will in the
Speaker 1: show notes, so you don't have to write that down
Speaker 1: while you're driving or sculpting, whatever you are doing now.
Speaker 1: We are at Ologies on Instagram and Blue Sky. We
Speaker 1: also have shorter kid friendly episodes called Smologies SMO l O,
Speaker 1: g I e s, and you can subscribe to those
Speaker 1: as your summer road trips turn into some autumn carpools
Speaker 1: or I guess the opposite for all of our friends
Speaker 1: on the other side of the equator. Smologies are linked
Speaker 1: in the show notes. They're available for free wherever you
Speaker 1: get podcasts. We have Ologies merch at ologiesmerch dot com,
Speaker 1: t shirts, sweatshirts, tots, mugs, await you. Thank you to
Speaker 1: Aaron Talbert for admitting the Ologies podcast Facebook group. Aveline
Speaker 1: Malick makes our professional transcripts. Noel Dilworth as our scheduling producer.
Speaker 1: Susan Hale is our managing director, and editors Jake Chafe
Speaker 1: and lead editor Mercedes Maitland keep everything together audio wise.
Speaker 1: This one is dedicated, of course to your Grandma pod
Speaker 1: Nancy aka Fancy Nancy, my mom, and also to her
Speaker 1: MS group that have been such wonderful friends to her
Speaker 1: and our family over the years. Nick Thorburn made the music,
Speaker 1: and if you stick around to the end, of the episode,
Speaker 1: I tell you a secret, and this week it's that
Speaker 1: I'm still sick and I don't like it, and I
Speaker 1: want so badly to take day quill. And I read
Speaker 1: and experienced a few years ago that day quill, if
Speaker 1: you have anxiety, can make your anxiety much worse. So
Speaker 1: all day I've been like, do I take the day
Speaker 1: will and maybe feel like I've had seventeen cups of espresso?
Speaker 1: Or do I just keep breathing through my mouth? And
Speaker 1: I've chosen to breathe through my mouth, and we got
Speaker 1: this episode up anyway, and I'm very glad. So Mom,
Speaker 1: if you're listening, I think you're listening to the end.
Speaker 1: I love you and thank you everyone for listening. And
Speaker 1: passes on to anyone you know who has been affected
Speaker 1: by MS or has someone in their life who has it.
Speaker 4: Okay, Barbara Pachadermatology, homeology or doo Zoology, Lithology and Technology, meteorology, pathology, anthology,
Speaker 4: seriology
Speaker 2: Seldology, Fibers and coming works