How Multiple Sclerosis Works

Summary

Stuff You Should Know — How Multiple Sclerosis Works

Hosted by Josh Clark & Charles W. "Chuck" Bryant
Date: April 27, 2017
Episode Summary by an Expert Podcast Summarizer

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Overview:

This episode of "Stuff You Should Know" dives deep into Multiple Sclerosis (MS): what it is, its causes, its varied symptoms and trajectories, the challenging diagnostic journey, hopes for treatment, and the human side of the disease, seen through Chuck’s personal reflections on his friend Billy’s MS journey. The discussion is compassionate, candid, and humanizes MS as much as it explains the biology and the current state of research.

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Personal Connection & Emotional Introduction

[01:45 - 02:40]

• Chuck shares his apprehension and emotional reasons for delaying the episode:

  “I’ve been avoiding this one for years because one of my very best friends died from complications of MS...And weirdly, yesterday would have been his birthday...this has got to happen.” — Chuck [01:46, 02:19]

• Josh recognizes the significance and assures his support, stating “This one’s for Billy.” [02:29]

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What Is Multiple Sclerosis?

[03:17 - 06:36]

• MS as an Autoimmune Disease:
  • The immune system mistakenly attacks the body’s own myelin sheath (the fatty layer encasing nerve fibers), causing lesions/plaque in the brain and central nervous system.
• Who Gets MS?
  • About 400,000 in the US, 2 million globally (relatively rare).
  • Strikes most often between ages 20-50; more common in women and in people of Northern European descent.
• The Big Unknowns:
  • The causes are mysterious—hereditary, environmental, and other factors may combine.
  • Vitamin D/sun exposure may play a role; “clusters” of cases are debated as a real pattern or coincidence.

Notable quote:

“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.” — Josh [06:23]

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How MS Damages the Body

[06:36 - 09:19]

• Body attacks the myelin, forming scar tissue (“sclerosis”) and lesions.
• This blocks nerve signals, which can manifest almost anywhere depending on lesion location—symptoms are highly variable.
• Regeneration can’t keep up with damage, leading to “devastating progressive disease” if left unchecked.

Notable Metaphor:

“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 going to come back.” — Josh [09:07]

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Diagnosis Challenges

[09:19 - 10:14]

• Early symptoms (dizziness, fatigue, blurry vision) are vague and can come/go, making MS hard to diagnose quickly.
• It's often mistaken for migraines or minor issues; diagnosis requires advanced testing like spinal tap and MRI to spot immune markers and lesions.

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Brief History of MS and Its Discovery

[12:13 - 14:47]

• Old cases suspected (Saint Lydwina, King George III’s grandson).
• Jean-Martin Charcot identified MS as a distinct disease (“father of modern neurology”).
• Discovery of myelin plaque and clarification that MS is autoimmune, not viral/blood toxin.
• Diagnostic spinal taps looking for IgG, oligoclonal bands, and myelin breakdown products; routine MRIs in diagnosis since the ‘80s.

Notable Moment:

“Ironically, in the 30s, there were lab mice going, hey, it’s autoimmune. And doctors were like, oh, don’t listen to the lab results from those silly mice.” — Chuck [15:22]

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Chuck’s Friend Billy: A Real-Life MS Story

[17:05 - 21:10]

• Billy, an adventurous outdoorsman, had early vague symptoms (dizziness, fogginess) but delayed medical care.
• Lifestyle and lack of early intervention worsened his outcome:

  “He didn’t do himself any favors...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.” — Chuck [19:01]

• Social stigma discussed; celebrities (Annette Funicello, Richard Pryor) concealed MS due to misperceptions.

Notable reflection:

“Some of the physical side effects can be embarrassing...it can be confused with things like [alcoholism] publicly.” — Chuck [20:03]

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Types of Multiple Sclerosis

[21:45 - 24:40]

• Main Types:

  • Relapsing-Remitting MS: Flare-ups followed by remission, non-progressive between attacks.
  • Primary Progressive MS: Constant progression, possibly with remissions; more severe.

• Chuck’s friend Billy had primary progressive MS.

• Progressive types lead more rapidly to disability:

  “His body was almost constantly in a state of muscle tension.” — Chuck [25:03]

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Progression, Severity, and Consequences

[24:41 - 28:41]

• Rapid physical decline: loss of mobility, speech, muscle control.
• Advanced complications: choking (swallowing difficulties), infections, and—tragically—high suicide rates due to depression.
• Depression may be biological (lesions in mood-regulating areas of the brain), not just reactionary.

Notable quote:

“One of the comorbidities of multiple sclerosis is depression... it can come from just being depressed that you have MS...or just the myelin sheath coating regions of your brain.” — Josh [27:13]

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Clinical Outlook: Most Do Not Get the Worst

[28:22 - 29:12]

• Majority of MS patients do not die from MS, nor suffer severe cognitive impairment. Many have mild disease.
• Early intervention is critical—“don’t ignore tingling or migraines, see a doctor.”

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Treatment: From Modern Drugs to Experimental Cures

[31:13 - 36:45]

• Current Drugs:
  • Disease-modifying agents (not cures) slow progression or suppress the immune attack.
• Radical New Approach: Stem Cell Immune Reset (HALT-MS):
  • Wipe out immune system with chemo, re-seed with patient's own blood stem cells.
  • Astonishing results in trials: up to 86% relapse-free for years, some saw disease reversed.

“The permanent damage was actually reversed in six of the 24 patients by this incredibly radical procedure.” — Josh [34:56]

• Risky (life-threatening infections), expensive, but potentially a “cure” for severe cases.

Notable Moment:

“Billy would have tried this in a second, I guarantee it.” — Chuck [36:15]

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Classification Nuances & Pediatric MS

[39:05 - 41:36]

• Related/in-between diseases: clinically isolated syndrome, Marburg MS, Devic’s Disease, etc.
• Pediatric MS is rare (~8,000 US cases), tough to diagnose/treat due to unknown drug impacts on developing brains.

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Symptom Management & Future Drugs

[41:36 - 43:09]

• New drugs (like Ocrevus) target both major MS forms.
• Additional treatments: antidepressants and anticonvulsants, also shown to help with chronic pain due to overlapping neural circuits with depression.

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Final Reflections: Advice and Regrets

[43:13 - 44:30]

• Chuck’s heartfelt advice to anyone with a friend/family member with a serious illness:

  “Try to overcome that if you have something like this going on...I wasn’t the friend to Billy that I should have been toward the end. And it’s fraught with regret.” — Chuck [43:15]

• Josh offers comfort and understanding.

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Notable Quotes & Moments

• “There’s just something about the body making a mistake and turning on its otherwise healthy self that’s just...it’s hard to wrap your head around it.” — Chuck [07:43]
• “I just wanted to make sure that we were saying that...if there’s one thing...go to the doctor and catch it early.” — Josh [28:49]
• “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.” — Chuck [35:03]
• Billy’s health journey, from living in a one-room shack to battling constant muscle tension, powerfully illustrates the individualized impact of MS.

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Key Timestamps

• [01:45] — Emotional introduction/dedication to Billy
• [03:17] — What is MS, who gets it, and why
• [06:36] — MS pathology: attack on myelin
• [09:19] — Early symptoms & why diagnosis is hard
• [12:13] — Historical cases and discovery
• [17:05] — Chuck recounts Billy’s story
• [21:45] — Types of MS explained
• [24:41] — Prognosis, symptoms, and how MS can kill
• [31:13] — Treatment, immune reset stem cell therapy
• [39:05] — MS spectrum and pediatric cases
• [41:36] — Symptom treatment & research
• [43:13] — Chuck’s candid regrets and listener encouragement

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Conclusion

This episode balances clear, accurate medical info about MS with deeply personal storytelling. It explores what MS does to the body, why it’s so confusing to diagnose and treat, cutting-edge therapies, and, most resonantly, what it feels like to watch a friend suffer from a disease that can be random, cruel, and—sometimes, though not always—devastating.

For more:
See the Stuff You Should Know website and search “multiple sclerosis,” or consult reputable medical resources and MS advocacy groups.

Transcript

[Podcast Announcer]

This is an I Heart podcast.

[Josh Clark]

Living with a rare autoimmune condition comes with challenges but also incredible strength. Especially for those living with conditions like myasthenia gravis or mg, and chronic inflammatory demyelinating polyneuropathy, otherwise known as cidp, finding empowerment in the community is critical. Untold Stories Life with a severe autoimmune condition. A Ruby Studio production in partnership with Argenics and explores people discovering strength in the most unexpected places. Listen to untold Stories on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

[Chuck Bryant]

Hey, everybody. Lowe's knows that rewards members get more. That's why when you sign up for Mylow's Rewards or Mylow's Pro Rewards, today, you get member deals, points, and more. Plus, you get free standard shipping starting at SilverKey and Gold Pro Status Savings for rewards members add up fast, so why wait? Become a rewards member for free and get more savings today. Link Loyalty program subject to terms and conditions. Details@lowe's.com Terms subject to change.

[Josh Clark]

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.

[Chuck Bryant]

And this is stuff you should know, not the button.

[Josh Clark]

Well, it's a button.

[Chuck Bryant]

She doesn't have the nuclear suitcase.

[Josh Clark]

It's the button.

[Chuck Bryant]

As far as we're concerned, that's our nuclear suitcase.

[Josh Clark]

Yeah, because we're dropping bombs every time we drop an episode.

[Chuck Bryant]

That's right.

[Josh Clark]

How you feeling? Pretty good.

[Chuck Bryant]

I am. I'm a little. Little apprehensive about this one.

[Josh Clark]

How come?

[Chuck Bryant]

Well, I've been avoiding this one for years because one of my very best friends died from complications of Ms. Oh, man.

[Josh Clark]

Just last year, you failed to tell me that when I sent this one over your way as a suggestion.

[Chuck Bryant]

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?

[Josh Clark]

Okay.

[Chuck Bryant]

And weirdly, yesterday was his birthday.

[Josh Clark]

No.

[Chuck Bryant]

Would have been his birthday. And you did not know that and had sent it over. And it was just kind of one of those eerie things where I was like, all right, this is. This has got to happen.

[Josh Clark]

What's your friend's name?

[Chuck Bryant]

Billy.

[Josh Clark]

Well, this one's for Billy.

[Chuck Bryant]

Yeah. And this will be. I'll pepper his story throughout this. It's very sad stuff, man.

[Josh Clark]

Well, I'm right here with you, man.

[Chuck Bryant]

Thank you.

[Josh Clark]

Just lean on me when you need it.

[Chuck Bryant]

I appreciate it.

[Josh Clark]

Okay, 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?

[Chuck Bryant]

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 had one of the worst kinds.

[Josh Clark]

Yeah. From what I understand, it's fairly rare for someone to. To die from complications of ms, Right.

[Chuck Bryant]

Yeah. I mean, I don't know if rare is the word, but it's definitely not the common outcome.

[Josh Clark]

Gotcha.

[Chuck Bryant]

Somewhere between rare and common.

[Josh Clark]

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.

[Chuck Bryant]

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.

[Josh Clark]

Yeah, by far.

[Chuck Bryant]

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.

[Josh Clark]

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.

[Chuck Bryant]

Yeah, it's really a mystery in a lot of ways. Some people have. 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. Yeah. What do you call it? A cause, I guess.

[Josh Clark]

Stop bringing up Clusters?

[Chuck Bryant]

Yeah, basically. Environmental or whether it's environmental or hereditary?

[Josh Clark]

Well, environmental people don't know for sure. That would suggest that clusters could exist.

[Chuck Bryant]

Right.

[Josh Clark]

But the fact that they're not sure if it is environmental or not, I think that leaves that cluster thing open to debate.

[Chuck Bryant]

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 as between 1 in 20 and 1 in 40, whereas it's what, 1 in 750 for the general population.

[Josh Clark]

Right.

[Chuck Bryant]

Obviously got something to do with heredity, but.

[Josh Clark]

Or it could be that you tend to live with your parents and your siblings, so you would share the same environment, too.

[Chuck Bryant]

So there's a lot of mystery surrounding the underlying causes.

[Josh Clark]

There really is. 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.

[Chuck Bryant]

Yeah.

[Josh Clark]

So multiple sclerosis is, like you said, it's an autoimmune disease where your body's immune system attacks your own body. So 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.

[Chuck Bryant]

Yeah.

[Josh Clark]

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. That's essentially what multiple sclerosis is.

[Chuck Bryant]

Yeah. Those plaques, that's called a 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. And that sheath. It's really. It's very basic and cruel how it acts. You know, any autoimmune disease is just devastating because there's just something about the body making a mistake and turning on. It's on an otherwise healthy self that's just. I don't know, it's hard to Hard to wrap your head around it.

[Josh Clark]

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.

[Chuck Bryant]

Right.

[Josh Clark]

So they can't tailor drugs to stop the body from doing that. They just know it's going after myelin.

[Chuck Bryant]

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.

[Josh Clark]

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 going to come back. Same thing with the myelin sheath.

[Chuck Bryant]

It is difficult to diagnose it first because the early signs are things like maybe a little dizzy, I may be fatigued, maybe my vision is blurry occasionally. And it kind of comes and goes to where people, you know, think like, oh, maybe it's migraines, maybe it's some, you know, 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.

[Josh Clark]

Right. And because it doesn't necessarily follow a strict set of symptoms, you know, you can get those lesions anywhere. And since their 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.

[Chuck Bryant]

Should we take a break and talk a little bit about the history and then get back into it?

[Josh Clark]

Oh, yeah, sure.

[Chuck Bryant]

All right, let's do it.

[Podcast Announcer]

You can make a difference in someone's life, including your own, with a job in home care. These jobs offer flexible schedules, health care, retirement options, and free training. They also provide paid time off and opportunities for overtime. Visit oregonhomecarejobs.com to learn more and apply. That's oregonhomecarejobs.com get fired up, y'. All. Season two of Good Game with Sarah Spain is underway. We just welcomed one of my favorite people and an incomparable soccer icon, Megan Rapinoe to the show, and we had a blast. We talked about her recent 40th birthday celebrations, Co hosting a podcast with her fiance, Sue, Bird watching former teammates retire and more. Never a dull Moment with Pino. Never take a listen. What do you miss the most about being a pro athlete? The final. The final and the locker room. I really, really like you just, you can't replicate, you can't get back. Showing up to the locker room every morning just to talk. We've got more incredible guests like the legendary Candace Parker and college superstar Az Foot. I mean, seriously, y', all, the guest list is absolutely stacked for season two. And you know, we're always going to keep you up to speed on all the news and happenings around the women's sports world as well, so make sure you listen. Good game with Sarah Spain on the iHeartRadio app, Apple Podcasts or wherever you get your podcasts. Presented by Capital One, founding partner of iHeart Women's Sports.

[Chuck Bryant]

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.

[Josh Clark]

Yeah, there's a saint that had it, they think, yeah. Back in the Middle Ages. Saint Lydwina, who's Dutch. And because she was Dutch, she was ice skating once back in the 14 to 15th century.

[Chuck Bryant]

Yeah, 1430s, she was ice skating and she fell.

[Josh Clark]

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.

[Chuck Bryant]

Yeah, these attacks or flare ups followed by periods of remission.

[Josh Clark]

Yeah, that's a specific type of Ms.

[Chuck Bryant]

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 like he clearly had Ms. And I believe that a couple of decades after that, that a Dr. Jean Martin Charcot became the first person, at least that got credit with describing the disease itself, identifying it and describing it.

[Josh Clark]

He's known as the father of modern neurology. He's popped up in some of our other stuff too.

[Chuck Bryant]

He sounded familiar. Yeah, because he had a woman, a patient that had these symptoms. She eventually died. He dissected her brain, discovered these lesions and called it scleros en place.

[Josh Clark]

Nice French.

[Chuck Bryant]

Thanks. And then the myelin was. 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.

[Josh Clark]

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. Oh, yeah. 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.

[Chuck Bryant]

Yeah. We should do one on the microscope.

[Josh Clark]

Sure.

[Chuck Bryant]

Because it seems like time and time again we've had, 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.

[Josh Clark]

Plus, we'll get to say Anton von Leeuwenhoek a bunch.

[Chuck Bryant]

Yeah, we've talked about him before. Right?

[Josh Clark]

Yeah.

[Chuck Bryant]

So Dawson described an inflammation, but they thought it was like a virus or a toxin running through the bloodstream at the time.

[Josh Clark]

They did for a long time, actually.

[Chuck Bryant]

Well, yeah. And ironically, in the 30s, there were lab mice going, hey, it's autoimmune.

[Josh Clark]

Right.

[Chuck Bryant]

And doctors were like, oh, don't listen to the lab results from those silly mice.

[Josh Clark]

No, it's clearly a blood toxin that's doing this.

[Chuck Bryant]

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. 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.

[Josh Clark]

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, immunoglobulin G antibodies, and something called oglioclonal bands, which are another type of protein that are immunoglobulins. 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 got a pretty good Ms. Diagnosis.

[Chuck Bryant]

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.

[Josh Clark]

What were his initial symptoms, do you remember?

[Chuck Bryant]

You know, like we didn't. He was a college roommate and we didn't. He ended up moving to the. Billy was. He was a very unique guy. He lived life to the fullest and did not really follow the rules of modern man.

[Josh Clark]

Where did he move?

[Chuck Bryant]

He kind of dropped out. He went to Boone, North Carolina.

[Josh Clark]

Oh, nice.

[Chuck Bryant]

Which is a great place to drop out.

[Josh Clark]

Sure.

[Chuck Bryant]

And lived in a one room shack like cabin in the middle of the woods.

[Josh Clark]

It's a great place to do that.

[Chuck Bryant]

With the toilet just sort of in the room.

[Josh Clark]

A toilet or a bucket?

[Chuck Bryant]

No, it was a toilet.

[Josh Clark]

Okay.

[Chuck Bryant]

It had running water and electricity, but it was a one room thing. And I went up there a few times and stayed with them. But we would like, you know, drink whiskey and shoot guns and cross streams.

[Josh Clark]

On the toilet in the middle of the room probably. So like Ghostbusters.

[Chuck Bryant]

So Billy kind of dropped out and this was before ms, you know, he just did that, you know, as a. He was like a river guide. A whitewater river guide.

[Josh Clark]

Oh, cool.

[Chuck Bryant]

And live the life that those dudes live. Which is to say not being responsible for a lot and kind of spending.

[Josh Clark]

A lot of time on the river.

[Chuck Bryant]

Yeah, spend a lot of time on the river and hanging out. So he dropped out and you know, 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.

[Josh Clark]

Gotcha.

[Chuck Bryant]

But he wasn't the kind to like, oh well, you know, I need to run right out to the doctor and see what's going on.

[Josh Clark]

It's not the river guide way.

[Chuck Bryant]

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 and. Which did not help. Like, you know, they, they say if you get a diagnosis, you wanna you wanna 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.

[Josh Clark]

Yeah.

[Chuck Bryant]

And he didn't do any of that stuff.

[Josh Clark]

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 kinda stave off some of those successive attacks where if you just ignore it or don't pay attention to, will just get worse and worse and worse. It's what's called a devastating progressive disease.

[Chuck Bryant]

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 Mouseketeer. And she didn't come out until, I think there were reports that she was an alcoholic, because they see her stumbling around.

[Josh Clark]

Right.

[Chuck Bryant]

And it can be confused with things like that publicly. And.

[Josh Clark]

And then she said, actually, tabloids, I have Ms. Yeah.

[Chuck Bryant]

How bad do you feel?

[Josh Clark]

Like, oh, sorry, Annette.

[Chuck Bryant]

And the same with Richard Pryor. He kept his Ms. Diagnosis a secret for a little while.

[Josh Clark]

Yeah. I remember everybody's like, richard Pryor's got tremors because he used to freebase.

[Chuck Bryant]

Yeah.

[Josh Clark]

Nope. Turned out Ms. Yeah, totally.

[Chuck Bryant]

Muhammad Ali didn't have Ms. But I remember people when Ali's condition got worse were like, oh, yeah, see, that's what happens with boxing.

[Josh Clark]

Well, I think they might be right about that one.

[Chuck Bryant]

Oh, was his brought on by boxing?

[Josh Clark]

Yeah, I think he had brain plaques from too many from cte.

[Chuck Bryant]

Okay. For some reason I thought.

[Josh Clark]

I mean, I could be mistaken, but I'm pretty sure that's why he had.

[Chuck Bryant]

He had Parkinson's.

[Josh Clark]

I think it was brought on by all the punches he took. Oh, I think.

[Chuck Bryant]

Yeah. I didn't research any of this, so I'm speaking off the cuff.

[Josh Clark]

Same here. All right. It's what we do best.

[Chuck Bryant]

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.

[Josh Clark]

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.

[Chuck Bryant]

Oh, yeah, yeah.

[Josh Clark]

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. Right. And with relapsing ms, you are, you have Ms. Symptoms. You have basically what amounts to an attack. Right. Where your symptoms come on.

[Chuck Bryant]

Yeah.

[Josh Clark]

And then they subside after a while. And during the time that they subside, you're in what's called remission, right?

[Chuck Bryant]

Yeah.

[Josh Clark]

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.

[Chuck Bryant]

Right.

[Josh Clark]

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 you are, 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 with you, 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, you know, by the year.

[Chuck Bryant]

Yeah. Which. That was what Billy had.

[Josh Clark]

Gotcha. That's what it. 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 like basically all the time and it's getting worse as it goes along.

[Chuck Bryant]

Yeah. And his would come together, 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 like 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 that was a progressive thing going on to where he was. He was obviously worst case scenario, like, couldn't walk in a wheelchair, couldn't talk.

[Josh Clark]

Man, that poor guy.

[Chuck Bryant]

Yeah. You know, muscle spasticity is a big hallmark of kind of the worst kinds. And that's when you're, you know, your body's just not communicating anymore. Like.

[Josh Clark]

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.

[Chuck Bryant]

Yeah. So like I said, he walked with a cane for a little while, but eventually, like just had to go, you know, lost tons of weight, eventually ended up in a wheelchair and was. His body was almost constantly in a state of muscle tension.

[Josh Clark]

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. On his poor myelin sheaths, maybe. You know. Yeah, because you'd think if you had a weakish immune system, your Ms. Wouldn't be quite as bad.

[Chuck Bryant]

Yeah, I guess I never really thought about that. Yeah, it's really interesting and it's super cruel to see like the body, like I said, the body turn on itself like that because Billy was very athletic and he was a good singer and like 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, like, 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, like, it would be, you know, it would be good for him, but it would also be a little bit scary because he would. His laugh would get out of control, such to where you had to worry about if, you know, he had taken a sip of water or something, you could choke on it.

[Josh Clark]

Yeah, apparently that's one of the ways that people do die from complications of Ms. Is choking because they have swallowing problems.

[Chuck Bryant]

Yeah, that was definitely. I mean, I don't remember the exact, like literal cause of death at the end, but you know, it just ravaged his body, basically.

[Josh Clark]

So the other ones I saw were that your lung function due to 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. Yeah, 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.

[Chuck Bryant]

Yeah, for sure.

[Josh Clark]

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 a. 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 coating 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?

[Chuck Bryant]

Well, yeah, I mean, it does originate in the central nervous system, but it can in some cases affect, like, your memory, your speech, your problem solving, and your higher brain function. I think it says in here, like 5 to 10% have severe impairment of higher brain function. So, yeah, of course depression's gonna go along with that, you know, so we.

[Josh Clark]

Shouldwe should say that for the most part, it's. 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.

[Chuck Bryant]

Yeah. I don't want to freak people out with Billy's story because he had the worst case scenario.

[Josh Clark]

Right, but.

[Chuck Bryant]

And the diagnosis doesn't mean you're headed toward that.

[Josh Clark]

No, no. I just wanted to make sure that we were saying that. So, you know, I don't want to 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.

[Chuck Bryant]

Yeah, absolutely.

[Josh Clark]

So let's talk about treatment and stuff after a break, huh?

[Chuck Bryant]

Yes.

[Josh Clark]

Okay.

[Podcast Announcer]

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[Josh Clark]

All.

[Podcast Announcer]

Season two of Good Game with Sarah Spain is underway. We just welcomed one of my favorite people and an incomparable soccer icon, Megan Rapinoe, to the show. And we had a blast. We talked about her recent 40th birthday celebrations, Co hosting a podcast with her fiance sue, bird watching former teammates retire and more. Never a dull moment with Pino. Take a listen. What do you miss the most about being a pro athlete? The final. The final and the locker room. I really, really like you. Just, you can't replicate, you can't get back. Showing up to the locker room every morning just to talk. We've got more incredible guests like the legendary Candace Parker and college superstar Az Foot. I mean, seriously, y', all, the guest list is absolutely stacked for season two. And you know, we're always going to keep you up to speed on all the news and happenings around the women's sports world as well. So make sure you listen to Good Game with Sarah Spain on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts. Presented by Capital One, founding partner of iHeart Women's Sports.

[Chuck Bryant]

All right. One of the things you can do once you are diagnosed is get on drugs. They've come a long way.

[Josh Clark]

You have to do drugs.

[Chuck Bryant]

That's right. The drugs that they use to help treat Ms. Have come a long way over the. 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.

[Josh Clark]

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.

[Chuck Bryant]

Yeah. Should we go ahead and talk about that?

[Josh Clark]

Yeah, yeah. So it's based on stem cells.

[Chuck Bryant]

Yeah. I mean, it's basically what they're doing is completely replacing your immune system.

[Josh Clark]

Right.

[Chuck Bryant]

It's nuts.

[Josh Clark]

So back in the 90s, two doctors from Ottawa. What province is Ottawa in? Do you remember Ontario? Let's just say Ottawa, Canada, like Atlanta, usa. 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 hemopoetic. I want to say stem cells.

[Chuck Bryant]

Yeah. Your own.

[Josh Clark]

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, 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.

[Chuck Bryant]

Yeah. 86% remained relapse free for three years after three years and counting, and almost 91% showed no sign of progression of the disease.

[Josh Clark]

Yeah.

[Chuck Bryant]

Which is remarkable.

[Josh Clark]

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. This wasn't. It wasn't a lightweight case of Ms. Yeah.

[Chuck Bryant]

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 3 and a 5.5 on that scale, which is, you know, fairly severe.

[Josh Clark]

Right. And so some people, for 23 out of the 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.

[Chuck Bryant]

Yeah.

[Josh Clark]

That permanent damage was actually reversed in six of the 24 patients by this incredibly radical procedure. That seems to work.

[Chuck Bryant]

Yeah. Like, one of the doctors was 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.

[Josh Clark]

Yeah. Some of these people have been in remission for 14 years, and for all intents and purposes, that's. That's cured.

[Chuck Bryant]

Yeah, it's amazing.

[Josh Clark]

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 Ottawa doctors discovery that you use five different kinds of chemotherapy to.

[Chuck Bryant]

Kill your immune system.

[Josh Clark]

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.

[Chuck Bryant]

Yeah. Billy would have tried this in a second, I guarantee it.

[Josh Clark]

Yeah.

[Chuck Bryant]

They had 24 volunteers initially between 2006 and 2010. For the first study, I think. No, no, this one was. This was in Denver. So I guess. Are they doing follow up research?

[Josh Clark]

Yeah, this is a different. So the one that you're talking about, that's the HALT study.

[Chuck Bryant]

Right.

[Josh Clark]

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.

[Chuck Bryant]

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.

[Josh Clark]

Yeah.

[Chuck Bryant]

And you know, who knows? Like, 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 going to 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.

[Josh Clark]

You know, 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.

[Chuck Bryant]

Like, people should be able to decide if they want to 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?

[Josh Clark]

Yeah.

[Chuck Bryant]

Like, I'm willing to take this chance and maybe die.

[Josh Clark]

Right.

[Chuck Bryant]

It's basically, I guess, what these volunteers are saying to make my life better.

[Josh Clark]

Sure. Yeah. I think one of the things that's probably staying 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. Like the article I sent you talked about a guy named Dave Bexfield. And he was accepted to this 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 are, that come from donors. And this study has stem cells that come from you.

[Chuck Bryant]

Yeah.

[Josh Clark]

So you're going to have to pay the $200,000 yourself. And he did. This guy got together, he scraped together like 186 grand, which is what it cost 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.

[Chuck Bryant]

Wow.

[Josh Clark]

And he's cured. So boom, I should say. And he's C worded.

[Chuck Bryant]

That's right. There are some other diseases that are sort of like ms, and they're is debate in the medical community whether or not they want to 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 demyelination, but it's just like one lesion. And sometimes you might develop ms, but not always. Sometimes it's just cid.

[Josh Clark]

Yeah, I thought that was weird. And to me it is kind of suggests how incomplete an understanding science has.

[Chuck Bryant]

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.

[Josh Clark]

Right.

[Chuck Bryant]

What else? There's something called Marburg, Mississippi, Childer's diffuse sclerosis, baloconcentric sclerosis and Devic's disease that are all sort of in that range of what's called idiopathic inflammatory demyelinating diseases. IBDs.

[Josh Clark]

Yeah.

[Chuck Bryant]

And children can get it too, even though it's pretty rare.

[Josh Clark]

Yeah. 8,000 cases in the U.S. and remember, there's like 400,000 of MS, but of pediatric multiple sclerosis, there's 8,000 of them, which is, I mean, talk about prime of life disease.

[Chuck Bryant]

Yeah. And I think it's even harder to diagnose in kids because that's certainly not something they're looking for.

[Josh Clark]

Right. And like the drugs that they're using, it's, it's like what we don't know what effects are going to have on kids. You know, is the cure worse than the disease?

[Chuck Bryant]

Right.

[Josh Clark]

Because there'. Swouow. We said that there's some disease altering drugs. There's a new one called Ocrevus that is pending approval from the fda, but looks like it's going to 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. 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 anticonvulsants.

[Chuck Bryant]

Yeah.

[Josh Clark]

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?

[Chuck Bryant]

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.

[Josh Clark]

Sure.

[Chuck Bryant]

And the benefits outweighing the side effects. Like, you gotta take all this into consideration for anything.

[Josh Clark]

Yeah. 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. So it kind of, in a way, provides researchers ways to. Whenever the body does something 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. 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.

[Chuck Bryant]

Wow.

[Josh Clark]

Yeah, I think so too.

[Chuck Bryant]

Yeah.

[Josh Clark]

You got anything else?

[Chuck Bryant]

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 because 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.

[Josh Clark]

Oh, yeah.

[Chuck Bryant]

Like, try to overcome that if you have something like this going on.

[Josh Clark]

That's good advice, man.

[Chuck Bryant]

That's what I will say. I swore I wasn't gonna do this.

[Josh Clark]

Are you misting?

[Chuck Bryant]

Yeah, it's.

[Josh Clark]

It's.

[Chuck Bryant]

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. It should have.

[Josh Clark]

And it's understandable, man.

[Chuck Bryant]

Yeah.

[Josh Clark]

I think you just did some sort of absolution, though.

[Chuck Bryant]

Well, we'll see.

[Josh Clark]

Well, if you want to know more about multiple sclerosis, you could type those words into the search [e-mail] and it will bring up this article. And since I said that and Chuck is misting, it's time for listener mail.

[Chuck Bryant]

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 alexithymia, you listed four groups studied as individuals with autism and alexithymia, individuals with autism without alexithymia, individuals with alexithymia 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, but having 30 years plus experience hearing normal people conditioned me to brace myself when you started the list. Inclusive language for the win. Keep up the great work. That is from Megan Isgan in Indianapolis, and she said, P.S. indianapolis is no Seattle, but maybe come to the Circle City sometime.

[Josh Clark]

Oh, nice. Up speak at the end.

[Chuck Bryant]

And we. I think we have been batting around the idea of an Indianapolis show, so it's possible. Yeah, hopefully that'll happen.

[Josh Clark]

Thanks a lot, Megan. That was very nice of you. We appreciate the kudos. And if you want to get in touch with us like Megan and tell us to come to your city, you can tweet to us. We're at Syskpodcast or JoshumClark. You can hang out with us on facebook.com Stuff youf Should Know or facebook.com Charles Wchuck Bryant. You can send us an email stuffpodcastowstuffworks.com and as always, join us at our home on the web stuffyou should know.com for more on this and thousands of.

[Podcast Announcer]

Other topics, visit howstuffworks.com I'm Bridget Armstrong, host of the new podcast the Curse of America's Next Top Model. I've been investigating the real story behind that iconic show. I ended up having anorexia issues, bulimia issues. By talking to the models, the producers, and the people who profited from it all, we basically sold our souls and they got rich. If you were so rooting for her and saw her drowning, why don't you help her? Listen to the Curse of America's Next Top model on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts. Hi, I'm Jenica Lopez, and in the new season of the Over Comfort podcast, I'm even more honest, more vulnerable, and more real than ever. Am I ready to enter this new part of my life? Like, am I ready to be in a relationship? Am I ready to have kids and to really just devote myself and my time? Join me for conversations about healing and growth, all from one of my favorite spaces, the kitchen. Listen to the new season of the Overcomer podcast on the iHeartRadio app, Apple Podcasts, or wherever you get your podcast. This is an iHeart podcast.