August 14, 2024 • 13 mins
Welcome to today's podcast episode, where we delve into the world of Multiple Sclerosis (MS). Whether you're familiar with MS or just learning about it, this episode offers valuable insights into this slow-progressing and often misunderstood disease.
Our host shares a personal journey of living with MS for over two decades, discussing the initial misdiagnosis, the challenges of navigating the healthcare system, and the importance of being proactive about your health. Learn about the various signs and symptoms of MS, including walking difficulties, brain fog, and the infamous "MS hug."
We also explore the emotional and psychological toll of MS, touching on issues like fatigue, depression, and the impact of stress. Discover why managing stress is crucial and how MS medications can sometimes do more harm than good.
This episode aims to raise awareness and foster a better understanding of MS, especially among veterans who may be dealing with multiple health issues. Join us for an open and honest discussion about the complexities of living with MS and the importance of community and support.
Tune in to gain a deeper understanding of MS and find out how you can navigate this challenging journey more effectively.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Hello, and welcome to my podcast. So, this podcast, we're going to talk about multiple sclerosis.
So, those of you who have MS might be aware of this stuff.
Those of you who don't may not need to hear this, but MS is a very slow-acting disease.
(00:20):
It takes a long time for it to actually show up. However, MS is very insidious. It doesn't stop.
It's like the turtle in Turtle vs. the Rabbit Race. It just keeps on going.
So, yeah, I had MS 20-something years ago, and they didn't diagnose it, actually.
(00:47):
And I was finally diagnosed, and when they did, it was all over the place.
I had the little scars in my brain and my spinal cord and everywhere, and it was really bad.
So MS is something that you kind of have to stay on the ball with.
If you think you have it, then you probably need to be making noise about it a lot.
(01:11):
Because if not, the doctors will just basically say, yeah, you just this or that and let it go.
I did. I had to work. I had kids.
I had bills to pay and problems, and I just was in the military. I fell and hit my head.
(01:31):
They called it back then a post-concussive syndrome, and it just kept on going,
and I didn't pay much attention.
Now, at the time, I was given an evoked potential test, which came back positive,
which should have told the doctor that I had MS.
However, she decided to ignore that test, and here we are today.
(01:57):
But multiple sclerosis is a very slow disease, and it takes a long time.
Now, I have secondary progressive MS. It's pretty bad.
So some people with MS may not show a lot of symptoms. They may not have a lot
of problems, but they'll still have MS.
Some people with MS may have MS and right off the bat be totally disabled.
(02:24):
Your brain is a very unique system. Everybody's brain is a very unique system.
And sometimes people react to it being scarred up in different ways.
Unfortunately, there's no way to tell. But one thing about MS is it's one of
the few things that can damage your corpus callosum.
(02:47):
The corpus callosum is what allows information transfer between the right side
of your brain and left side of your brain, which is pretty darn important, right?
So you get a lot of scar tissue in your corpus callosum, and you're going to have a lot of problems.
And sometimes that's where MS will hit. I have a lot of damage in my corpus callosum.
(03:09):
So MS is one of the few diseases that can actually do that.
That's a bad thing. Now, there are a couple signs that will lead you to know that you have MS.
I speak from experience, okay? The doctors that you're talking to,
they don't know what they're talking about.
(03:30):
I mean, they may be speaking from a textbook or some training they got in school,
but I am speaking from experience, okay?
So I'm telling you, if you have MS or think you have MS, mess.
These are some signs that may give you an idea, you know, that you have MS.
If you notice yourself walking slower than the people around you and,
(03:54):
you know, you're not trying to walk slower, it just happens.
Well, that's a sign that you may have MS.
And the problem is, is that there has been damage to the nervous system that
actually controls you walking and your brain is It's compensating.
Now, it's not you being lazy.
It's not you. It's just the fact that your brain is trying to compensate for
(04:19):
your walking. Okay? So that's something...
You may notice people may be looking at you going, Hey, why are you lagging
back? And it's just, it's happening. Okay. The damage is happening.
And that's one thing.
Another thing is brain fog.
Say that you're normally just pretty quick.
You know, you can quickly just pick up on those answers or make those comebacks really fast.
(04:44):
And, but all of a sudden, man, you get a few days a week that you just can't,
you're just not on a pickup.
You're just not that quick. it. You just, something's wrong.
You know, that's another sign that you may be having those problems.
Another problem is they call it the MS hug. And it's, this is very prominent
with people that have MS. It happens a lot.
(05:07):
You feel like somebody's giving you a bear hug around the chest. Okay.
Very common. It happens. So those are signs you might have MS.
You, you know, you bring those up to your doctor and let him know,
hey, this is what's going on.
You need to give me an MRI. You need to check me out.
One thing about MS is they always want to give you a spinal tap.
(05:29):
I am vehemently against spinal taps.
Spinal taps damage your spinal cord, right?
Anytime that they put a needle into your spinal cord, that's an invasive attack
against your nervous system.
I don't agree with them, but that's up to you.
You know, take an MRI. MRIs still aren't good for you, but they're better than a spinal tap.
(05:57):
So just my opinion, but.
Yeah. Also, something else. MS is one of those diseases that make you exhausted.
It will exhaust you. And that's because it is damaging your brain.
And your brain is the basic control of your body.
(06:21):
But your brain is amazing.
So it's always trying to compensate for that damage. so but
that's an exhausting that's an exhausting thing so
whether you know it or not your brain is kicked
into overtime trying to compensate for all that damage that
ms is doing and it's tiring you out so you
(06:42):
have to understand that it's not being lazy when you're tired with ms but that
fatigue will drag you down right it'll make you depressed it'll make you not
happy with your life it will will definitely cause you to go into a depression spiral.
There's depression with MS. It just comes from the brain damage,
but there's also depression that comes from the exhaustion.
(07:05):
And yeah, depression is a big thing with MS. You can't let yourself get drawn
into that depression spiral, right?
I know I have, and that is not okay.
It just, it's, there's a good chance it's going to to happen,
it's not okay. You got to talk to somebody about it.
Tools for healthy living at yahoo.com. You can reach out to me.
(07:28):
There are also lots of helplines.
Don't let yourself get stuck in that depression. That depression, man, that is a booger.
And there's also a lot of drugs that they will give you with MS.
A lot of the MS drugs that they give you are worse than MS, if you ask me.
One of them that I took, one of the biologicals, lowered my white blood cell
(07:52):
count, damn near killed me.
Capaxone's been around forever. They give it to you, but it's also really hard on your liver.
The problem with MS drugs, they don't really know what causes MS.
They don't really know the mechanics of MS.
They know that it eats off the myelin sheath, but they don't know the actual
(08:16):
process that's creating the issue, why the white blood cells are doing what
they're doing, and why you're attacking yourself. self.
So the drugs they're giving you are, yeah, this might work. Take this.
In my opinion, and this is also a very humble opinion,
why would I take something that's guaranteed to damage my liver,
(08:39):
lower my white blood cell count, if it's something that may,
might stop or lower my chances is for an exacerbation.
When most of the time my exacerbations are caused by stress.
Stress is a big deal in MS. The more stressed out you are, the worse you are going to be.
(09:04):
You can't let stress be a big deal in your life.
You got to cut your stressors out. That's one of the biggest things you're going
to have to look at is what is stressing me out in my life?
What is stressing me out? Could be a hundred things, but you're going to have
to focus and find out what the biggest stressors are and get rid of them.
(09:30):
And that's tough. And I'm going to say it's almost impossible,
but it's something you're going to have to do.
I'm sorry, I'm getting a a little hoarse. But yeah, that's just the way it is.
Becoming disabled with MS is probably the most horrible thing I ever went through
(09:53):
in my life with MS and the TBI and everything.
Because all of a sudden, after building my career for many, many years, now I've got nothing.
I I can't work anymore. I can't do anything anymore.
They've taken away how I pay my bills.
(10:14):
And I am at the mercy of Social Security and all these other things.
And I'm going to be really honest with you.
All the charities out there that you think are there to help you,
they'll talk to you, but they're not going to give you a dime.
If you ask for money, they'll send you to every other charity that might give
(10:37):
you money, but nobody's going to give you anything.
So until Social Security decides that you're disabled, which could take,
I don't know, 20 years if they, you're on your own.
So telling you, it is a very difficult situation if you're in that situation.
(10:59):
It is very difficult. And that alone is a huge stressor.
And that alone is going to cause you to have exacerbations. And that exacerbation
is going to cause you to become more injured and disabled from the disease.
And then you're going to have more problems.
(11:19):
And then it's a vicious, horrible circle. And it's, I can't even explain how MS and our system is,
is a wheel of disaster.
It just, it gets worse and worse and worse because basically there's no help.
(11:41):
You're stuck in this wheel of high stress, and it just keeps going and going and going.
And yeah, I can't even tell you, but eventually things will work out.
However you get there is how you get there.
I'm making this podcast because I want you all to understand that there are
(12:06):
a lot of of things that go into these three particular illnesses,
MS, PTSD, and brain injury that nobody ever talks about.
Nobody ever says. I'm sure that every illness has its little problems,
but these particular things, a lot of veterans especially come back with.
(12:30):
I mean, MS, maybe not, But TBI, brain injury for sure, and MS, as I have,
and a lot of people suffer with it, and they just don't get how difficult it
is to have and live with and survive.
So I want to make sure that we discuss it. It needs to be discussed out loud. out.
(12:53):
I mean, there are actually, well, there are people that have MS that are like
movie stars and people, and it just doesn't get enough talk about,
as far as I'm concerned, or how that we're treated. Look at Richard Pryor.
I mean, yeah, I mean, he had all kinds of other problems, but still he had MS. And yeah.
(13:17):
So anyway, I try to keep these down to 15 minutes, so I'm done talking.
And I'll talk more about it the next time I'm on. You guys take it easy, okay?
Hello, and welcome to my podcast. So, this podcast, we're going to talk about multiple sclerosis.
So, those of you who have MS might be aware of this stuff.
Those of you who don't may not need to hear this, but MS is a very slow-acting disease.
(00:20):
It takes a long time for it to actually show up. However, MS is very insidious. It doesn't stop.
It's like the turtle in Turtle vs. the Rabbit Race. It just keeps on going.
So, yeah, I had MS 20-something years ago, and they didn't diagnose it, actually.
(00:47):
And I was finally diagnosed, and when they did, it was all over the place.
I had the little scars in my brain and my spinal cord and everywhere, and it was really bad.
So MS is something that you kind of have to stay on the ball with.
If you think you have it, then you probably need to be making noise about it a lot.
(01:11):
Because if not, the doctors will just basically say, yeah, you just this or that and let it go.
I did. I had to work. I had kids.
I had bills to pay and problems, and I just was in the military. I fell and hit my head.
(01:31):
They called it back then a post-concussive syndrome, and it just kept on going,
and I didn't pay much attention.
Now, at the time, I was given an evoked potential test, which came back positive,
which should have told the doctor that I had MS.
However, she decided to ignore that test, and here we are today.
(01:57):
But multiple sclerosis is a very slow disease, and it takes a long time.
Now, I have secondary progressive MS. It's pretty bad.
So some people with MS may not show a lot of symptoms. They may not have a lot
of problems, but they'll still have MS.
Some people with MS may have MS and right off the bat be totally disabled.
(02:24):
Your brain is a very unique system. Everybody's brain is a very unique system.
And sometimes people react to it being scarred up in different ways.
Unfortunately, there's no way to tell. But one thing about MS is it's one of
the few things that can damage your corpus callosum.
(02:47):
The corpus callosum is what allows information transfer between the right side
of your brain and left side of your brain, which is pretty darn important, right?
So you get a lot of scar tissue in your corpus callosum, and you're going to have a lot of problems.
And sometimes that's where MS will hit. I have a lot of damage in my corpus callosum.
(03:09):
So MS is one of the few diseases that can actually do that.
That's a bad thing. Now, there are a couple signs that will lead you to know that you have MS.
I speak from experience, okay? The doctors that you're talking to,
they don't know what they're talking about.
(03:30):
I mean, they may be speaking from a textbook or some training they got in school,
but I am speaking from experience, okay?
So I'm telling you, if you have MS or think you have MS, mess.
These are some signs that may give you an idea, you know, that you have MS.
If you notice yourself walking slower than the people around you and,
(03:54):
you know, you're not trying to walk slower, it just happens.
Well, that's a sign that you may have MS.
And the problem is, is that there has been damage to the nervous system that
actually controls you walking and your brain is It's compensating.
Now, it's not you being lazy.
It's not you. It's just the fact that your brain is trying to compensate for
(04:19):
your walking. Okay? So that's something...
You may notice people may be looking at you going, Hey, why are you lagging
back? And it's just, it's happening. Okay. The damage is happening.
And that's one thing.
Another thing is brain fog.
Say that you're normally just pretty quick.
You know, you can quickly just pick up on those answers or make those comebacks really fast.
(04:44):
And, but all of a sudden, man, you get a few days a week that you just can't,
you're just not on a pickup.
You're just not that quick. it. You just, something's wrong.
You know, that's another sign that you may be having those problems.
Another problem is they call it the MS hug. And it's, this is very prominent
with people that have MS. It happens a lot.
(05:07):
You feel like somebody's giving you a bear hug around the chest. Okay.
Very common. It happens. So those are signs you might have MS.
You, you know, you bring those up to your doctor and let him know,
hey, this is what's going on.
You need to give me an MRI. You need to check me out.
One thing about MS is they always want to give you a spinal tap.
(05:29):
I am vehemently against spinal taps.
Spinal taps damage your spinal cord, right?
Anytime that they put a needle into your spinal cord, that's an invasive attack
against your nervous system.
I don't agree with them, but that's up to you.
You know, take an MRI. MRIs still aren't good for you, but they're better than a spinal tap.
(05:57):
So just my opinion, but.
Yeah. Also, something else. MS is one of those diseases that make you exhausted.
It will exhaust you. And that's because it is damaging your brain.
And your brain is the basic control of your body.
(06:21):
But your brain is amazing.
So it's always trying to compensate for that damage. so but
that's an exhausting that's an exhausting thing so
whether you know it or not your brain is kicked
into overtime trying to compensate for all that damage that
ms is doing and it's tiring you out so you
(06:42):
have to understand that it's not being lazy when you're tired with ms but that
fatigue will drag you down right it'll make you depressed it'll make you not
happy with your life it will will definitely cause you to go into a depression spiral.
There's depression with MS. It just comes from the brain damage,
but there's also depression that comes from the exhaustion.
(07:05):
And yeah, depression is a big thing with MS. You can't let yourself get drawn
into that depression spiral, right?
I know I have, and that is not okay.
It just, it's, there's a good chance it's going to to happen,
it's not okay. You got to talk to somebody about it.
Tools for healthy living at yahoo.com. You can reach out to me.
(07:28):
There are also lots of helplines.
Don't let yourself get stuck in that depression. That depression, man, that is a booger.
And there's also a lot of drugs that they will give you with MS.
A lot of the MS drugs that they give you are worse than MS, if you ask me.
One of them that I took, one of the biologicals, lowered my white blood cell
(07:52):
count, damn near killed me.
Capaxone's been around forever. They give it to you, but it's also really hard on your liver.
The problem with MS drugs, they don't really know what causes MS.
They don't really know the mechanics of MS.
They know that it eats off the myelin sheath, but they don't know the actual
(08:16):
process that's creating the issue, why the white blood cells are doing what
they're doing, and why you're attacking yourself. self.
So the drugs they're giving you are, yeah, this might work. Take this.
In my opinion, and this is also a very humble opinion,
why would I take something that's guaranteed to damage my liver,
(08:39):
lower my white blood cell count, if it's something that may,
might stop or lower my chances is for an exacerbation.
When most of the time my exacerbations are caused by stress.
Stress is a big deal in MS. The more stressed out you are, the worse you are going to be.
(09:04):
You can't let stress be a big deal in your life.
You got to cut your stressors out. That's one of the biggest things you're going
to have to look at is what is stressing me out in my life?
What is stressing me out? Could be a hundred things, but you're going to have
to focus and find out what the biggest stressors are and get rid of them.
(09:30):
And that's tough. And I'm going to say it's almost impossible,
but it's something you're going to have to do.
I'm sorry, I'm getting a a little hoarse. But yeah, that's just the way it is.
Becoming disabled with MS is probably the most horrible thing I ever went through
(09:53):
in my life with MS and the TBI and everything.
Because all of a sudden, after building my career for many, many years, now I've got nothing.
I I can't work anymore. I can't do anything anymore.
They've taken away how I pay my bills.
(10:14):
And I am at the mercy of Social Security and all these other things.
And I'm going to be really honest with you.
All the charities out there that you think are there to help you,
they'll talk to you, but they're not going to give you a dime.
If you ask for money, they'll send you to every other charity that might give
(10:37):
you money, but nobody's going to give you anything.
So until Social Security decides that you're disabled, which could take,
I don't know, 20 years if they, you're on your own.
So telling you, it is a very difficult situation if you're in that situation.
(10:59):
It is very difficult. And that alone is a huge stressor.
And that alone is going to cause you to have exacerbations. And that exacerbation
is going to cause you to become more injured and disabled from the disease.
And then you're going to have more problems.
(11:19):
And then it's a vicious, horrible circle. And it's, I can't even explain how MS and our system is,
is a wheel of disaster.
It just, it gets worse and worse and worse because basically there's no help.
(11:41):
You're stuck in this wheel of high stress, and it just keeps going and going and going.
And yeah, I can't even tell you, but eventually things will work out.
However you get there is how you get there.
I'm making this podcast because I want you all to understand that there are
(12:06):
a lot of of things that go into these three particular illnesses,
MS, PTSD, and brain injury that nobody ever talks about.
Nobody ever says. I'm sure that every illness has its little problems,
but these particular things, a lot of veterans especially come back with.
(12:30):
I mean, MS, maybe not, But TBI, brain injury for sure, and MS, as I have,
and a lot of people suffer with it, and they just don't get how difficult it
is to have and live with and survive.
So I want to make sure that we discuss it. It needs to be discussed out loud. out.
(12:53):
I mean, there are actually, well, there are people that have MS that are like
movie stars and people, and it just doesn't get enough talk about,
as far as I'm concerned, or how that we're treated. Look at Richard Pryor.
I mean, yeah, I mean, he had all kinds of other problems, but still he had MS. And yeah.
(13:17):
So anyway, I try to keep these down to 15 minutes, so I'm done talking.
And I'll talk more about it the next time I'm on. You guys take it easy, okay?
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