Stuff You Should Know - How Multiple Sclerosis Works
Episode Date: April 27, 2017When the immune system mistakes the tissue covering neural connections as foreign invaders, the result can devastate the body. There is hope, however, in a new radical treatment that resets the immune... system. Learn more about your ad-choices at https://www.iheartpodcastnetwork.comSee omnystudio.com/listener for privacy information.
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On the podcast, Hey Dude, the 90s called,
David Lasher and Christine Taylor,
stars of the cult classic show, Hey Dude,
bring you back to the days of slip dresses
and choker necklaces.
We're gonna use Hey Dude as our jumping off point,
but we are going to unpack and dive back
into the decade of the 90s.
We lived it, and now we're calling on all of our friends
to come back and relive it.
Listen to Hey Dude, the 90s called
on the iHeart radio app, Apple Podcasts,
or wherever you get your podcasts.
Hey, I'm Lance Bass, host of the new iHeart podcast,
Frosted Tips with Lance Bass.
Do you ever think to yourself, what advice would Lance Bass
and my favorite boy bands give me in this situation?
If you do, you've come to the right place
because I'm here to help.
And a different hot, sexy teen crush boy bander
each week to guide you through life.
Tell everybody, ya everybody, about my new podcast
and make sure to listen so we'll never, ever have to say.
Bye, bye, bye.
Listen to Frosted Tips with Lance Bass
on the iHeart radio app, Apple Podcasts,
or wherever you listen to podcasts.
Welcome to Stuff You Should Know
from HowStuffWorks.com.
Hey, and welcome to the podcast.
I'm Josh Clark.
There's Charles W. Chuck Bryant.
Jerry's over there.
Their finger on the button.
And this is Stuff You Should Know.
Not the button.
Okay, well, it's a button.
She doesn't have the nuclear suitcase.
It's the button as far as we're concerned.
That's our nuclear suitcase.
Yeah, cause we're dropping bombs
every time we drop an episode.
That's right.
How are you feeling pretty good?
I am, I'm a little apprehensive about this one.
How come?
Well, I've been avoiding this one for years
because one of my very best friends died
from complications of MS.
Oh man.
Just last year.
You failed to tell me that when I sent this one
over your way as a suggestion.
Well, you'd sent it before he died
and I didn't think I could do it.
And I just kind of feel like now's the time, you know?
Okay.
And weirdly, yesterday was his birthday.
And would have been his birthday.
And you did not know that and had sent it over.
It was just kind of one of those eerie things
where I was like, all right, this has got to happen.
What's your friend's name?
Billy.
Well, this one's for Billy.
Yeah, and this will be pepper his story throughout this.
It's very sad stuff.
Man, well, I'm right here with you, man.
Thank you.
Just lean on me when you need it.
I appreciate it.
So we are talking multiple sclerosis or MS as it's called.
And I knew very little about this.
I guess you probably are a lot more familiar with it
than I am then, huh?
Yeah, I mean, obviously personally, his journey with it,
but as we will see, everyone's journey with MS is different.
It is, depending on what kind you have
and depending on you as an individual,
it can progress in different ways very slowly, very quickly.
It can be devastating.
It can be not, it can be very manageable.
He, he had one of the worst kinds, so.
Yeah, from what I understand,
it's very, fairly rare for someone to die
from complications of MS, right?
Yeah, I mean, I don't know if rare is the word,
but it's definitely not the common outcome.
Gotcha.
Somewhere between rare and common, I think.
I gotcha, but it's already a fairly rare disease.
I think something like 400,000 people in the United States
and I think 2 million worldwide have it,
which I mean, it's a substantial number of people,
but in the context of the larger global
and national population, it's not that many.
It is rare, I would guess.
Yeah, it's just a little bit of an overview, I guess.
They call it the prime of life disease.
And it's very cruel in that way
because it most often strikes people between 20 and 50,
but I think even usually in your like 20s.
And that's when Billy was hit with it.
And it's, I think, more women than men get it.
Yeah, by far.
Because it's an autoimmune disease
and more women get autoimmune diseases more,
which I didn't know.
More Caucasians get it
and apparently Caucasians of Northern European descent
are more likely to get it.
And it's really, there's a lot of mystery
about why people get this.
Yeah, like for example, why Caucasian people
more than people with darker skin,
or also I think part of the same coin,
why people who live away from the equator
more than people who live in the tropics.
That suggests that the sun might have something to do with it.
Or I think one of the things
that they've been looking into lately is vitamin D,
which you produce through exposure to the sun.
Yeah, it's really a mystery in a lot of ways.
Some people have brought up the idea
that there are clusters of areas.
Other people have said, you know, that's not the case.
Clusters are BS.
You're reading, you know, you're reverse engineering,
a, what do you call it, a cause, I guess.
Stop bringing up clusters.
Yeah, basically.
Environmental or whether it's environmental or hereditary.
Well, environmental. People don't know for sure.
That would suggest that clusters could exist.
Right.
But the fact that they're not sure
if it is environmental or not,
I would think that leaves that cluster thing open to debate.
Yeah, but whether or not you can,
it's hereditary, it's up for debate too.
Because I think it says the risk for people with parents,
siblings, or children who are diagnosed
is between one in 20 and one in 40.
Whereas it's what, one in 750 for the general population.
Right.
Obviously got something to do with heredity, but.
Or it could be that you tend to live
with your parents and your siblings,
so you would share the same environment with them too.
So.
There's a lot of mystery surrounding the underlying causes.
There really is.
And so much so that they don't even know what is going on.
Well, they do know generally what's going on
on the biological level, but not specifically, right?
Yeah.
So, multiple sclerosis is like you said.
It's an autoimmune disease where your body's immune system
attacks your own body.
There's a number of different ones.
Like there's Crohn's disease is one.
There's inflammatory bowel syndrome.
And they all have in common that the body is mistaking,
or the immune system is mistaking some part of,
some normal natural part of the body as a foreign invader
and is attacking it as such.
And in the case of multiple sclerosis,
the body is mistaking what's called the myelin sheath,
this fatty substance that protects the axons,
that neurons, that nerve cells communicate between.
They attack that sheath.
And as they attack that sheath,
they start to break it down.
And basically what amounts to scar tissue
and a type of plaque starts to develop.
And those form lesions.
And it can happen anywhere on your brain
or your central nervous system.
And that's essentially what multiple sclerosis is.
Yeah, those plaques, that's called the sclerosis.
So literally multiple sclerosis means
you have multiple plaques, this hardened tissue,
it places on your body.
And like you said, you have the neurons,
which are the nerve cells themselves,
and the axons are the fibers that connect everything,
wrapped in that sheath.
It's very basic and cruel how it acts.
Any autoimmune disease is just devastating
because there's just something about the body
making a mistake and turning on an otherwise healthy self.
That's just, I don't know,
it's hard to wrap your head around it.
It really is.
And one of the reasons why it's so tragic
is because we have really no idea
how to make the body stop doing that.
And in the case of multiple sclerosis,
you have a body that's attacking the myelin sheath,
but researchers aren't quite sure exactly
what part of the myelin sheath is triggering the attack.
So they can't tailor drugs to stop the body from doing that.
They just know it's going after myelin.
Yeah, and the myelin can repair itself if there's damage,
but the problem with MS is this,
they call it demyelinization, it's happening too fast,
basically, and sometimes it can be so severe
that those nerve fibers are severed outright.
Right, exactly.
It's kind of like if you clear cut a forest
and then before you let the forest come back,
you start cutting down saplings,
it's never gonna come back.
Same thing with the myelin sheath.
It is difficult to diagnose it first
because the early signs are things like,
maybe a little dizzy and maybe fatigued.
Maybe my vision is blurry occasionally.
And it kind of comes and goes to where people think like,
oh, maybe it's migraines, maybe it's something minor.
And because it is not the most common thing,
I don't think doctors immediately are like,
well, we need to get you in for a spinal tap.
Right, and because it doesn't necessarily follow
a strict set of symptoms,
you can get those lesions anywhere.
And since they're nerve, they're disrupting
or affecting the nerve signals,
they can present in all sorts of different ways, right?
So yeah, doctors are frequently stumped
when you present with MS symptoms.
Should we take a break and talk a little bit
about the history and then get back into it?
Oh, yeah, sure.
All right, let's do it.
On the podcast, HeyDude, the 90s called David Lasher
and Christine Taylor, stars of the cult classic show, HeyDude,
bring you back to the days of slip dresses
and choker necklaces.
We're gonna use HeyDude as our jumping off point,
but we are going to unpack and dive back
into the decade of the 90s.
We lived it, and now we're calling on all of our friends
to come back and relive it.
It's a podcast packed with interviews, co-stars,
friends, and nonstop references to the best decade ever.
Do you remember going to Blockbuster?
Do you remember Nintendo 64?
Do you remember getting frosted tips?
Was that a cereal?
No, it was hair.
Do you remember AOL instant messenger
and the dial-up sound like poltergeist?
So leave a code on your best friend's beeper
because you'll want to be there
when the nostalgia starts flowing.
Each episode will rival the feeling
of taking out the cartridge from your Game Boy,
blowing on it and popping it back in
as we take you back to the 90s.
Listen to HeyDude, the 90s,
called on the iHeart radio app,
Apple Podcasts, or wherever you get your podcasts.
Hey, I'm Lance Bass, host of the new iHeart podcast,
Frosted Tips with Lance Bass.
The hardest thing can be knowing who to turn to
when questions arise or times get tough
or you're at the end of the road.
Ah, okay, I see what you're doing.
Do you ever think to yourself,
what advice would Lance Bass
and my favorite boy bands give me in this situation?
If you do, you've come to the right place
because I'm here to help.
This, I promise you.
Oh, God.
Seriously, I swear.
And you won't have to send an SOS
because I'll be there for you.
Oh, man.
And so my husband, Michael.
Um, hey, that's me.
Yep, we know that, Michael.
And a different hot, sexy, teen crush boy bander
each week to guide you through life step by step.
Oh, not another one.
Kids, relationships, life in general can get messy.
You may be thinking, this is the story of my life.
Just stop now.
If so, tell everybody, yeah, everybody
about my new podcast and make sure to listen
so we'll never, ever have to say, bye, bye, bye.
Listen to Frosted Tips with Lance Bass
on the iHeart Radio app, Apple Podcasts
or wherever you listen to podcasts.
So, historically, MS, although it is new on the described
disease front, obviously it's been around for a long time
and people just didn't know what the heck was going on.
Yeah, there's a saint that had it, they think.
Yeah.
Back in the Middle Ages, Saint Lidwina, who's Dutch.
And because she was Dutch, she was ice skating once.
Back in the 14th to 15th century?
Yeah, 1430s.
She was ice skating and she fell.
And after she fell, she developed excruciating pain,
headaches, trouble walking, paralysis.
And apparently, there would be periods
where she didn't have these symptoms
and then they would come back and it would get worse
and then she would not have them again,
which are hallmarks of multiple sclerosis, as we'll see.
Yeah, these attacks or flare ups
followed by periods of remission.
Yeah, that's a specific type of MS.
Well, yeah, which we'll get to that.
But King George III apparently had a grandson
who had a very extensive diary about his health
until he died in 1848.
And most people think he clearly had MS.
And I believe that a couple of decades after that,
that a doctor, Jean-Martin Chaco, became the first person,
at least it got credit, with describing the disease itself,
identifying it and describing it.
He's known as the father of modern neurology.
He's popped up in some of our other stuff, too.
He sounded familiar, because he had a woman, a patient,
that had these symptoms.
She eventually died.
He dissected her brain, discovered these lesions,
and called it sclerosis en plaque.
Nice French.
Thanks.
And then the myelin was discovered after that.
But they didn't put two and two together at the time
with the myelin, but it was discovered after that.
Right.
So the plaques and the effect on the myelin
was really first discovered or demonstrated
by a Scottish doctor, James Dawson, who, thanks to better
microscopes than previous researchers that had,
he could see these lines of communication between nerve
cells and brain cells are basically
being worn down to nothing and, in some cases, broken.
And this is the basis of MS.
I'm James Dawson.
Good night.
Yeah, we should do one on the microscope.
Sure.
Because it seems like time and time again,
like just literally because the being
able to see things smaller has gotten more advanced.
Like every time that has taken a leap forward,
medical science has.
Oh, sure.
It's really interesting.
Plus we'll get to say Anton von Lievenhoek a bunch.
Yeah, we've talked about him before, right?
Yeah.
So Dawson described an inflammation,
but they thought it was like a virus or a toxin running
through the bloodstream at the time.
They did for a long time, actually.
Well, yeah, and ironically, in the 30s,
there were lab mice going, hey, it's autoimmune.
Right.
And doctors were like, oh, don't listen to the lab results
from those silly mice.
No, it's clearly a blood toxin that's doing that.
Yeah, so they sort of were not looking at the evidence
right in front of their faces for a little while.
Until the 1940s, when I think at Columbia University,
they found that these weird protein byproducts
in their cerebrospinal fluid, and that was 1947.
And that's kind of when the doors really opened.
And they said, oh, I think we know what's going on.
And I think we know how we can test for this.
Right, right.
That established one of the big tests for MS,
which is they're looking for, so they go do a spinal tap,
right, which is where they draw a sample of cerebrospinal
fluid from between your vertebra.
And when they're testing for MS, they're
looking for high levels of IgG, immunoglobin G antibodies,
and something called oglioclonal bands, which
are another type of protein that are immunoglobins.
And then they're also looking for these protein byproducts
that are the result of myelin being broken down
in the cerebrospinal fluid, which is not supposed to happen.
So when they find all this stuff,
they can say, this is probably multiple sclerosis.
And since the 40s, they've had that test.
And then starting in about the 80s or 90s,
they also introduced MRI.
And when you compare those two things together,
and they both suggest MS, you get a pretty good MS diagnosis.
Yeah, but like I said, it's a slow process.
I remember Billy, it took a while until they finally
landed on MS for him.
And that just kind of seems to be the way it goes.
What were his initial symptoms, do you remember?
He was a college roommate, and we didn't.
He ended up moving to the, Billy was a very unique guy.
He lived life to the fullest and did not really
follow the rules of modern man.
Where did he move?
He kind of dropped out.
He went to Boone, North Carolina, which
is a great place to drop out.
Sure.
And lived in a one room shack-like cabin
in the middle of the woods.
It's a great place to do that.
With the toilet just sort of in the room.
A toilet or a bucket?
No, it was a toilet.
OK.
It had running water and electricity.
Oh, OK.
But it was a one room thing.
And I went up there a few times and stayed with him.
But we would like, you know, drink whiskey and shoot guns.
And it was just.
Cross streams on the toilet in the middle of the room?
Probably so.
Like ghostbusters?
So Billy kind of dropped out, and this was before MS.
He just did that as he was like a river guide,
a whitewater river guide.
Oh, cool.
And lived the life that those dudes live,
which is to say not being responsible for a lot and kind
of spending a lot of time on the river.
Yeah, spending a lot of time on the river and hanging out.
So he dropped out and didn't have a phone.
This was pre-cell phone.
So we weren't in the best touch.
This is when I was post-college living in New Jersey.
So the memories of his exact early diagnosis
are a little foggy.
But I think I remember like fogginess and dizziness
kind of being his first warning signs.
Gotcha.
But he wasn't the kind of like, oh, well, you know,
I need to run right out to the doctor and see what's going on.
It's not the river guide way.
No.
And it certainly wasn't the Billy way.
So he, you know, he didn't do himself any favors
in the early years.
And then when he finally did find out,
he didn't do himself any favors because he didn't take care
of himself.
And he didn't rehab and take his medication
like he should have and sort of fell down
into a spiral of alcohol and drug abuse, which did not help.
Like, you know, they say if you get a diagnosis,
you want to live as clean as you can and work out
and be as physical as you can.
And really try and take care of your body
to stave off these physical symptoms.
Yeah.
And he didn't do any of that stuff.
And plus the early thing is a really big part of it, too.
Because again, what's happening is the myelin
sheaths around your entire central nervous system
are subject to attack.
And so if you can catch this early,
you can kind of stave off some of those successive attacks
where if you just ignore it or don't pay attention to it,
it will just get worse and worse and worse.
It's what's called a devastating progressive disease.
Yeah.
And there's, you know, a lot of people keep it a secret at first
because it can, some of the physical side effects
can be embarrassing.
I know that this article mentioned Annette Funicello
waited for years to come out, you know,
former Disney Mousketeer.
And she didn't come out until, I think,
there were reports that she was an alcoholic
because they see her stumbling around.
Right.
And it can be confused with things like that publicly.
And then she said, actually, tabloids, I have MS.
Yeah.
How bad do you feel?
Tabloids were like, oh, sorry Annette.
And the same with Richard Pryor.
He kept his MS diagnosis a secret for a little while.
Yeah.
I remember everybody was like, Richard Pryor's got tremors
because he used a freebase.
Yeah.
Nope.
Turned out MS.
Yeah, totally.
Muhammad Ali didn't have MS.
But I remember people when Ali's condition got worse
were like, oh, yeah, you know, see,
that's what happens with boxing.
Well, I think they might be right about that one.
Oh, it says on by boxing.
Yeah.
I think he had brain plaques from too many, from CTE.
OK.
For some reason, I thought.
I mean, I could be mistaken, but I'm pretty sure
that's why he had dementia.
He had Parkinson's.
I think it was brought on by all the punches he took.
I think.
Yeah, I didn't research any of this.
So I'm speaking off the cuff.
Same here.
All right.
That's what we do.
Well, at any rate, people can kind of keep it a secret
for a little while, because it can be a diagnosis,
can be scary at first when you get diagnosed with MS,
because of the unpredictability.
And you sort of have to, I remember with Billy,
they were kind of like, we got to kind of see how this goes
before we know what kind you have.
Right.
Which is fairly primitive as far as medicine goes.
So Chuck, this article has four kinds.
What I saw is that it's been pared down to basically two.
Oh, yeah.
Yeah, our article says that there's
progressive relapsing, relapsing remitting.
There is primary progressive and then secondary progressive.
And basically what I saw is that there's
an umbrella group called remitting or relapsing
multiple sclerosis, RMS.
And then there's another kind that is, sorry,
it's relapsing multiple sclerosis.
Then the other kind is called primary progressive.
And with relapsing MS, you have MS symptoms.
You have basically what amounts to an attack,
where your symptoms come on.
And then they subside after a while.
And during the time that they subside,
you're in what's called remission.
And then they come on again.
So you're in relapse phase.
But during those two times, your disease
is not getting worse, right?
It's not progressing.
Right.
That's the relapsing type of multiple sclerosis.
The other kind is primary progressive.
And they used to call that one.
Progressive relapsing?
Yeah.
And they kind of folded all those together.
But the one that survived was primary progressive.
And that's basically like your disease is getting worse
pretty much constantly.
And it might be happening fast.
It might be happening slowly.
But you have a disease progression
that can be noted by the people in charge of taking care of you.
But then during that, you may have small periods
where you don't have symptoms.
So you've got a remission.
Or you have periods where they come on really strong.
And it gets really acute.
So you have a relapse.
But during this time, during like, say, a year,
or five years, or 10 years, your MS is getting worse by the year.
Yeah, which that was what Billy had.
Gotcha.
Yeah, that's what it sounds like.
I have the impression that any kind of progressive type
of multiple sclerosis is the worst of the two.
Because you have it basically all the time.
And it's getting worse as it goes along.
Yeah, and his would come in fits and starts
for the first period of years.
And it was that classic thing, I think,
where his flare ups would be not so bad at one point
and then kind of calm down and then be really bad and then
calm down.
But the whole time, there was a progressive thing going on
to where he was obviously a worst case scenario.
Like, couldn't walk in a wheelchair, couldn't talk.
Man, that poor guy.
Yeah, the muscle spasticity is a big hallmark
of kind of the worst kinds.
And that's when your body's just not communicating anymore.
Well, no, that myelin sheath is exposed.
And so the electrical impulses are going haywire.
So the muscles they're commanding are going haywire, too.
Yeah, so he walked with a cane for a little while,
but eventually just had to go, lost tons of weight,
eventually ended up in a wheelchair,
and his body was almost constantly
in a state of muscle tension.
You know the ironic part about that
is it sounds like his immune system was super healthy,
which is how it was able to stage those massive attacks
on his poor myelin sheaths.
Maybe.
You know?
Yeah.
Because you'd think if you had a weakest immune system,
your MS wouldn't be quite as bad.
Yeah, I guess you don't know what you thought about that.
Yeah, it's really interesting.
And it's super cruel to see, like I said,
the body turn on itself like that,
because Billy was very athletic, and he was a good singer,
and it took away his ability to do all this stuff.
And it got so bad where he would,
and it mentions it in this article about even when you're
eating, you have to be really careful,
because you can choke on your tongue or choke on food.
When he would get cracked up and laugh at us,
it would be good for him.
But it would also be a little bit scary,
because his laugh would get out of control
such where you had to worry about if he had taken
a sip of water or something, and he could choke on it.
Yeah, apparently that's one of the ways
that people do die from complications of MS
is choking because they have swallowing problems.
Yeah, that was definitely, I mean,
I don't remember the exact literal cause of death at the end,
but it just ravaged his body, basically.
So the other ones I saw were that your lung function,
your weakened muscle activity is one of the other main ways.
Like an infection from a sore due to immobility,
if not treated correctly, those things can lead to say
like a blood infection, and you can die from sepsis.
And then sadly, suicide is another leading cause of death
among people who have MS.
Something like 6% to 14% of people with MS
commit suicide, and one of the reasons why
that's much higher than the population at large
is because one of the comorbidities
of multiple sclerosis is depression.
Yeah, for sure.
And it's apparently from what I saw in my research,
one of those things that's not widely recognized
and therefore not widely treated enough
as far as MS goes, that it's apparently a big problem
with it, and it can come from just being depressed
that you have MS, because again,
this strikes you in the prime of your life.
So you think about all the stuff you're missing out on
because you have debilitating MS,
or just the myelin sheath coding regions of your brain.
If you get lesions in the parts of your brain
that regulate your mood, you can become,
the physiology of your brain can lead to depression
because of the changes there.
Well, yeah, I mean, it does originate
in the central nervous system, but it can in some cases
affect your memory, your speech, your problem solving,
and your higher brain function.
I think it says in here like five to 10%
have severe impairment of higher brain function.
So yeah, of course, depression's gonna go along with that.
So we should say that for the most part,
from what I saw, the vast majority of patients
with multiple sclerosis don't die from it.
They don't suffer major cognitive impairment
as a result of it.
And a lot of them don't even exhibit major symptoms
for the most part.
Yeah, I don't wanna freak people out with Billy's story
because he had the worst case scenario.
Right, but it is.
And a diagnosis doesn't mean you're headed toward that.
No, no, I just wanted to make sure
that we were saying that, you know,
I don't wanna scare anybody,
but we gotta get information out there, right?
Because I mean, if there's one thing
that would be really great,
if we could do with this episode,
is if there's somebody out there right now
who is starting to have migraines or tingling in their arm,
that they'll go to the doctor and catch it early, you know?
Absolutely.
So let's talk about treatment and stuff after a break, huh?
Yes.
Okay.
Let's talk about treatment and stuff after a break.
On the podcast, Hey Dude, the 90s called
David Lasher and Christine Taylor,
stars of the cult classic show, Hey Dude,
bring you back to the days of slip dresses
and choker necklaces.
We're gonna use Hey Dude as our jumping off point,
but we are going to unpack and dive back
into the decade of the 90s.
We lived it, and now we're calling on all of our friends
to come back and relive it.
It's a podcast packed with interviews, co-stars, friends,
and nonstop references to the best decade ever.
Do you remember going to Blockbuster?
Do you remember Nintendo 64?
Do you remember getting Frosted Tips?
Was that a cereal?
No, it was hair.
Do you remember AOL Instant Messenger
and the dial-up sound like poltergeist?
So leave a code on your best friend's beeper,
because you'll wanna be there
when the nostalgia starts flowing.
Each episode will rival the feeling
of taking out the cartridge from your Game Boy,
blowing on it and popping it back in,
as we take you back to the 90s.
Listen to Hey Dude, the 90s called
on the iHeart radio app, Apple Podcasts,
or wherever you get your podcasts.
Hey, I'm Lance Bass, host of the new iHeart podcast,
Frosted Tips with Lance Bass.
The hardest thing can be knowing who to turn to
when questions arise or times get tough,
or you're at the end of the road.
Ah, okay, I see what you're doing.
Do you ever think to yourself,
what advice would Lance Bass
and my favorite boy bands give me in this situation?
If you do, you've come to the right place,
because I'm here to help.
This, I promise you.
Oh, God.
Seriously, I swear.
And you won't have to send an SOS,
because I'll be there for you.
Oh, man.
And so, my husband, Michael.
Um, hey, that's me.
Yep, we know that, Michael.
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All right, one of the things you can do
once you are diagnosed is get on drugs.
They've come a long way.
You can't get to do drugs.
That's right.
The drugs that they use to help treat a mess
have come a long way over the years.
They're called disease modifying agents.
And, you know, they don't cure anything,
but what they're trying to do is slow the progression
or alter or suppress that immune system in such a way
that it helps.
Yeah, yeah.
And there's a lot of ways out there
to actually treat the symptoms that are drug-based
and non-drug-based, but those disease modifying agents
are the ones that actually alter the course
of the multiple sclerosis.
But, like you said, they don't actually cure it.
Although it is possible that there is a cure for it out
right now, but it's new enough.
It was just started in the late 90s,
and it's so not so radical that it just
hasn't been proven as a cure, but it's
kind of looking like it might be.
Yeah, should we go ahead and talk about that?
Yeah, yeah, so it's based on stem cells.
Yeah, I mean, it's basically what they're doing
is completely replacing your immune system.
Right.
It's nuts.
So, back in the 90s, two doctors from Ottawa.
What province is Ottawa in?
Do you remember?
The best one. Ontario.
Well, let's just say Ottawa Canada, like Atlanta, USA.
Right.
These doctors, Mark Friedman and Henry Atkins,
they had this idea of basically reducing your immune system
to nothing, so that when they managed to keep you alive,
if they managed to keep you alive,
when they restarted your immune system again
by reintroducing some of your stem cells,
your hemopoietic, I want to say, stem cells.
Yeah, your own.
Right, that it would build your immune system up again,
and then they could watch the immune system restart MS
and they'd be able to watch the disease progression
from square one.
But as one of them said in an interview,
they failed miserably, but it's great that they did
because what they found was that when they devastated
the immune system, brought it to zero, wiped it out,
and then reintroduced your blood stem cells
to the patient again, the MS didn't come back
in most of the people they tried this on.
Yeah, 86% remain relapsed free for three years,
after three years, and counting,
and almost 91% showed no sign of progression of the disease,
which is remarkable.
And then in that original, I think, 1999 study
that Friedman and Atkins carried out,
something like 23 of the 24,
the disease was stopped in its tracks,
and apparently these people had like a pretty bad cases
of MS, it wasn't a lightweight case of MS.
Yeah, there's something called
the expanded disability status scale,
which basically kind of ranks how bad they are
in terms of walking dexterity cognition,
and they all had to rate between a three and a 5.5
on that scale, which is fairly severe.
Right, and so some people, for 23 out of 24
in the original study, and I think like you said,
67% in later studies, the disease just stopped,
it did not get any worse,
even though these were progressive cases of MS.
And in something like six of the 24,
they actually, the disease was walked back.
So like the permanent damage,
apparently there's a rule of thumb among people
with multiple sclerosis or doctors,
that if you have a symptom that doesn't get better
or go away after a year,
you can consider it permanent damage.
That permanent damage was actually reversed
in six of the 24 patients
by this incredibly radical procedure that seems to work.
Yeah, like one of the doctors is like,
no one likes using the C word,
and he was like, but I'm gonna go ahead
and say it like these people are cured.
Yeah, some of these people have been in remission
for 14 years, and for all intents and purposes,
that's cured.
Yeah, it's amazing.
It is, it's pretty great.
But again, it's also a very, very risky procedure.
What they're using in, I think the most current incarnation,
I think it's called HALT-MS is the process,
but it's based on those auto-adopters discovery
that you use five different kinds of chemotherapy.
To kill your immune system.
To kill your immune system.
Man.
And so obviously you have to be kept in isolation
and everyone has to wear a crazy biohazard suit around you
and they have you on antimicrobials and it kills everything.
And they are trying to fight off any infection
and anyone who's ever stayed in a hospital knows
the best place to get an infection is a hospital.
So it's extraordinarily dangerous,
but if you can survive,
and if you have like a pretty bad case of MS,
I'm guessing you'd be willing to try this, it can cure you.
Yeah, Billy would have tried this in a second,
I guarantee it.
Yeah.
They had 24 volunteers initially between 2006 and 2010
for the first study I think.
Oh no, no, this one was, this was in Denver,
so I guess are they doing followup research?
Yeah, this is a different,
so the one that you're talking about,
that's the HALT study.
Right.
I'm not sure exactly what Friedman and Atkins
called their technique,
but as far as I know they're the pioneers
of wiping out your immune system
and then replacing it to get rid of MS.
Yeah, so I think I might have mixed together
some of the stats for these two studies,
but let's just say they're both very promising.
Yeah.
And you know, who knows, I don't know the procedure,
I know we've talked about doing shows
on medical testing and stuff and the procedure,
like the stepping stones from here to like,
all right, now when is this gonna be a thing?
But I mean, it's so kind of dangerous
and fraught with complications.
I don't know if this can be super widespread, you know?
I, from what I'm seeing in the research though,
it has such positive backing, I think,
kind of across the spectrum that it's,
I think people are gung-ho about it.
Like people should be able to decide
if they wanna take that risk.
Like Billy was certainly in a position
where he's like, it's not gonna get any worse for me.
You know? Right, yeah.
Like I'm willing to take this chance and maybe die.
Right.
Is basically, I guess what these volunteers are saying
to make my life better.
Sure.
Yeah, I think one of the things that's probably
standing in most people like that's way
is the costs associated because supposedly
there's really just stupid loopholes
that you have regarding stem cell therapies.
All right, of course.
Like the article I sent you talked about a guy named
Dave Bexfield and he was accepted to the study,
willing to take the risks.
And his insurance company was like,
yeah, that's great, it's a stem cell study,
but we only cover stem cells that come from donors.
And this study has stem cells that come from you.
So you're gonna have to pay the $200,000 yourself.
And he did, this guy got together,
he scraped together like 186 grand,
which is what it costs to carry out this trial
for him specifically.
And I guess afterward he went after his insurance company
and got not only that money back,
but like another $200,000 or something in interest.
Wow.
And he's cured.
So boom, I should say, and he's C-worded.
That's right.
There are some other diseases that are sort of like MS
and there is debate in the medical community
whether or not they wanna actually classify them.
There's something called clinically isolated syndrome,
which means you can have an attack
or a flare-up or an episode from this demyelinization,
but it's just like one lesion.
And sometimes you might develop MS,
but not always, sometimes it's just CID.
Yeah.
I thought that was weird.
To me, it just kind of suggests
how incomplete an understanding science has of MS.
Well, yeah.
And like I said, some people say,
well, you shouldn't even call this MS.
And some people say, no, it's like maybe the mildest form
you can get.
Right.
What else?
There's something called Marburg MS.
Shielders diffuse sclerosis,
bellow concentric sclerosis and Devick's disease
that are all sort of in that range
of what's called idiopathic inflammatory
demyelinating diseases, IIDDs.
Yeah.
And children can get it too,
even though it's pretty rare.
Yeah, 8,000 cases in the US.
And remember, there's like 400,000 of MS,
but a pediatric multiple sclerosis.
There's 8,000 of them,
which is, I mean, talk about prime of life disease.
Yeah, and I think it's even harder to diagnose in kids
because that's certainly not something
they're looking for.
Right, and the drugs that they're using,
it's like we don't know what effects
they're gonna have on kids,
is the cure worse than the disease.
Right.
Because we said that there's some disease-altering drugs.
There's a new one called Ocrevis
that is pending approval from the FDA,
but looks like it's gonna go through,
which is, I think, the first disease-modifying agent
that is shown to treat both progressive
and relapsing forms of multiple sclerosis.
And it goes after the immune system.
I think it tries to suppress your B cells
in the immune system.
Oh, wow.
So there's plenty of treatments that go after the disease,
but there's also a lot of treatments
that treat symptoms, right?
And one of the ones that are used
are antidepressants and anti-convulsants.
Yeah.
And so there's a lot of questions like,
should we be giving those to kids,
even though they have MS?
Right.
What's the long-term effect of giving antidepressants
to a child whose brain chemistry
is still in the beginning stages of development?
Yeah, I mean, drugs can be wonderful,
but there's not a drug you can take
that doesn't have some sort of other effect.
Sure.
And the benefits outweighing the side effects,
like you gotta take all this into consideration
for anything, you know?
One of the other things I saw about antidepressants, Chuck,
was they have figured out that they can use it
to treat chronic pain.
And one of the outcroppings from MS,
so again, MS is like your body going haywire
in really unique ways for each person
with multiple sclerosis.
Yeah.
So it kind of in a way provides researchers ways to,
whenever the body does something
that it's not supposed to,
it's a great place for researchers to go study
the normal processes of the body.
And one of the things they figured out
is that in treating chronic pain with multiple sclerosis,
you can use antidepressants.
And the reason why is because apparently,
chronic pain and depression use a lot
of the same neural pathways and create a lot
of the same changes to the plasticity of the brain
as one another.
Interesting.
And that chronic pain and depression
may be in a lot of ways more related,
at least neurologically,
than chronic pain and acute pain,
which seem to be kind of different animals.
Wow.
Yeah.
Fascinating.
I think so too.
Yeah.
You got anything else?
Yeah, you know,
I think I would just advise anyone,
and it's not just MS,
but like if you got a,
I wasn't the friend to Billy
that I should have been toward the end.
And it's fraught with regret.
And part of that is cause life gets in the way
and part of it is just, you know,
it's not the easiest thing to face as a friend.
And I think what I did was I let myself off the hook
too easily for that stuff,
which I feel really crappy about now.
Oh yeah.
Like try to overcome that
if you have something like this going on.
That's good advice, man.
That's what I will say.
I swear I wasn't gonna do this.
Are you missing?
Yeah, it's, it was very hard.
And I wasn't the friend I should have been.
And my friend Eddie was great and stood by Billy
and I went and saw him at the end in the hospital,
but it was, you know, I had a lot of regret
about the final years and not going to see him,
I guess I should have.
And it's understandable, man.
Yeah.
I think you just did some sort of absolution though.
Well, we'll see.
Well, if you want to know more about multiple sclerosis,
you could type those words into the search bar
at housestuffworks.com and it will bring up this article.
And since I said that and Chuck is missing,
it's time for a listen and mail.
That means it's Wednesday.
This is on empathy a little bit too.
Hey guys, listening to empathy right now,
I had to pause to say thank you.
When you were talking about the study relating to autism
and alexithemia, you listed four groups studied
as individuals with autism and alexithemia,
individuals with autism without alexithemia,
individuals with alexithemia, but not autism,
and then people who didn't have either one.
Growing up as a sister of a guy with autism,
I can tell you how many times I've heard people
describe individuals without autism as normal people.
It's such a lazy way to describe a group
who doesn't exhibit just one of a multitude
of other characteristics.
And frankly, it's demeaning and rude,
so thank you for not being those guys.
You're always careful in your wording,
so I shouldn't be surprised that having 30 years
plus experience hearing normal people condition me
to brace myself when you started the list.
Inclusive language for the win.
Keep up the great work.
That is from Megan Isgen in Indianapolis,
and she said, PS, Indianapolis is no Seattle,
but maybe come to the Circle City sometime.
Nice upspeak at the end.
And I think we have been batting around the idea
of an Indianapolis show, so.
It's possible.
Yeah, hopefully that'll happen.
Thanks a lot, Megan, that was very nice of you.
We appreciate the kudos.
And if you wanna get in touch with us like Megan
and tell us to come to your city,
you can tweet to us.
We're at S-Y-S-K podcast, or Josh M. Clark.
You can hang out with us on facebook.com
slash stuff you should know,
or facebook.com slash Charles W. Chuck Bryant.
You can send us an email with stuff podcasts
at howstuffworks.com.
And as always, join us at our home on the web,
stuffyoushouldknow.com.
For more on this and thousands of other topics,
visit howstuffworks.com.
On the podcast, Hey Dude, the 90s called,
David Lasher and Christine Taylor,
stars of the cult classic show, Hey Dude,
bring you back to the days of slip dresses
and choker necklaces.
We're gonna use Hey Dude as our jumping off point,
but we are going to unpack and dive back
into the decade of the 90s.
We lived it, and now we're calling on all of our friends
to come back and relive it.
Listen to Hey Dude, the 90s called
on the iHeart radio app, Apple Podcasts,
or wherever you get your podcasts.
Hey, I'm Lance Bass, host of the new iHeart podcast,
Frosted Tips with Lance Bass.
Do you ever think to yourself,
what advice would Lance Bass and my favorite boy bands
give me in this situation?
If you do, you've come to the right place
because I'm here to help.
And a different hot, sexy teen crush boy bander
each week to guide you through life.
Tell everybody, ya everybody, about my new podcast
and make sure to listen so we'll never, ever have to say.
Bye, bye, bye.
Listen to Frosted Tips with Lance Bass
on the iHeart radio app, Apple Podcasts,
or wherever you listen to podcasts.