Williams, Richard Pryor and Teri Garr are a few of the famous who have had or died from multiple sclerosis.

Stay with us as we talk to neurologist doctor David Robinson and patient advocate Miss Yvette Cabrera-Rojas about multiple sclerosis.

Next on Kentucky Health.

>> Kentucky Health is funded in part by a grant from the Foundation for a Healthy Kentucky.

>> There are 1 million people in the United States with the diagnosis of multiple sclerosis, though this includes many high profile individuals.

Most patients are our family, friends, and neighbors.

Multiple sclerosis is most often diagnosed in those between the ages of 20 and 50, and is more common in women than in men.

An increased risk for developing multiple sclerosis has been linked to lifestyle, such as smoking environment, moving to colder climates, family history and infections, particularly from Epstein-Barr virus.

Sadly, there is no cure.

However, there have been significant gains in disease management and mobilization of resources required to support the patient and caregivers to provide for the best possible quality of life.

To tell us a bit more about Multiple Sclerosis, we have two guests from Norton Healthcare, the Neurosciences Institute.

They are doctor David Robertson.

He earned his medical degree from the University of Kansas School of Medicine, and then an internship and residency in neurology at Vanderbilt University School of Medicine in Nashville.

He is now in practice at the Hussung Family Multiple Sclerosis Center in Norton Healthcare Neuroscience Institute as a neurologist specializing in multiple sclerosis.

Our second guest is Miss Yvette Cabrera-Rojas.

Miss Cabrera-Rojas is a patient with multiple sclerosis, an advocate for others with multiple sclerosis, and a resource for enhancing the quality of life in providing a voice to individuals and families with multiple sclerosis.

She is the director of Norton Neuroscience Institute Resource Center, where she oversees operations of all support services, educational, therapeutic, and exercise programs for individuals and families living with neurological disorders.

Thank you both for being with us today.

It's really kind of interesting.

How badly did I miss up the name of the institute?

Is it Hussing?

You did.

I did okay with that because I don't want that family getting mad at me.

Especially when they've been so kind to put together such an important.

Important.

That's correct.

Institute.

David, let's start off with you, please.

So what is multiple sclerosis?

>> Well, first of all, thank you for having us.

We're happy to be here.

Multiple sclerosis is a disorder of the brain spinal cord.

It seems like the immune system kind of learns a bad habit.

And instead of keeping bad guys out, it turns on itself and causes inflammation in the brain.

And the spinal cord.

>> Is there a typical patient who comes in with multiple sclerosis?

>> Yeah.

So there are some classic things that happen to a number of people.

But really every patient with multiple sclerosis is different.

Some of the common things that occur are optic neuritis.

So suddenly becoming blind in one eye.

Really spinal cord problems.

So both legs having weakness or numbness, having trouble going to the bathroom, or even arms and legs having trouble, and even things like vertigo or double vision.

And these occur pretty quickly in patients due to the inflammation.

So over 24 or 48 hours something goes from feeling okay to I've got a big problem.

>> Okay, so other than okay, I in the brain thing, what are some other areas of the body that are going to be affected?

>> Well, I don't think I'm alone in this in a controversial world, but most of us think the brain is pretty important.

And the brain.

>> A neurologist.

I'll give.

>> You that.

I'm a neurologist.

The brain is pretty important.

Our brains create our realities, so our brains take information in.

So all of our senses give our brains information to decide what's going on out there.

Sure.

And then we turn that into actions, whether speech, motor walking, talking, etc.

So our brains are pretty important.

Yeah.

And since our brains form our entire realities, when areas of the brain have trouble, it can throw off all functions.

>> So you can have bladder dysfunction, bowel dysfunction, all these kinds of things.

>> You can.

>> Okay.

So Yvette, tell me about some of the symptoms, if you don't mind early onset that you were having.

>> Right.

When I was before I was diagnosed, I was having issues with my vision.

And so when I was finally diagnosed in 1989, I had lost vision in my right eye.

>> Really?

>> Yeah.

And then it went to double vision.

And and that's where the diagnosis came.

>> And that's what other.

So they were able to make the diagnosis after just the visual loss alone.

>> Right.

It was pretty bad the visual loss.

And so I was sent for an MRI.

And that's when they found a small lesion on the optic nerve.

And I think that's the most typical way of diagnosing Ms.

is with optic neuritis.

>> Really.

>> It's probably the most common first presentation.

>> Really interesting.

Is that something that is picked up rather quickly then?

And is that by the ophthalmologist or the optician or your primary care physician?

>> I was on the highway by Zorn Avenue when it happened, and so I pulled over to the side.

>> Wait a minute, it was that sudden?

>> That was that?

Yes.

Pretty much.

You had nothing already.

I was already having a lot of pain in the eye right above it and just wasn't feeling right.

And so I went to the hospital and then they ran some tests, and then they sent me to a neurologist.

And that's where the diagnosis came in in July of 89.

>> What are some of the tests that are run to make this diagnosis.

>> Yep.

So sometimes it can be pretty straightforward.

Sometimes a story and an exam can really give us clues.

It's likely multiple sclerosis.

The tests that then become more conclusive is MRI.

MRI is our most useful tool in multiple sclerosis.

So typically MRI of the brain and the spinal cord to see what lesions might be there when it gets a little bit trickier because Ms.

can be hard to diagnose.

We use spinal tap.

So sampling the cerebrospinal fluid for a certain type of protein.

Just a tip the data toward miss or away from multiple sclerosis.

>> From your perspective Yvette, what are some of the other symptoms that may come and how do they present from your own experience and from what patients have told you?

>> From my own experience, I know that as soon as I start getting irritable, something's bothering me.

Like I'm off a degree and then it will show up.

Now, I haven't had any symptoms in quite a while thanks to the treatments that are out there, but when I did have, my symptoms were numbness on one side of my body, right?

Yes.

Numbness.

Like I can't feel my arm or my leg.

It didn't interfere with with my daily function.

It was bothersome, but that is one of the symptoms numbness and tingling.

And as as I said before, the eye, the vision, losing vision, fatigue, lots of fatigue more than normal, the kind of fatigue where it's more than enough for the day to get up from bed and go and brush your teeth.

You're done.

Really?

Yes.

>> You mentioned something about if you get upset.

So I guess if something knocks you off your your balance point, you can trigger something.

So what do you do or and what does some of the typical patients do to cope with this.

To try to prevent that from happening and or to cope with some of the symptoms and problems that they may have?

>> I don't think there's anything that you could do to prevent if it's if it's going to happen.

Yes, ma'am.

I think that obviously you follow the treatment that the doctor has you on, but my my advice has always been when you feel that you're off a degree, it is better to be seen by a provider than to let it go and, and see, you know, if it's just a transient symptom, which sometimes happens, you might have a symptom for 24 hours and then it's gone.

So you want to see if it lasts more than a day or two and then call your doctor because, you know, once damage is done, is done.

So you want to address beforehand.

>> Once you get multiple sclerosis, is it a continuum that you're going to continue to get worse or are there periods?

It sounds like what Yvette just said, that you may get better or worse?

Better or worse.

How does that work?

>> Yeah.

So big picture.

Not totally disclosing Yvette's story.

Yes.

Once we meet the once we make the diagnosis of multiple sclerosis and start therapy, our goal in today's world is that we stop the disease where it is, so we can't undo some of the changes that have gotten somebody there.

But once we have that diagnosis, our goal is that we go on a medication that prevents any new relapses, any new inflammation, so that new symptoms don't develop.

Now, what we can't do is repair some of the damage that's already been done.

So those are the symptoms that kind of ebb and flow in people.

Yeah.

And those have names.

And sometimes I draw figures for patients.

But really our goal is wherever your disability story is at diagnosis now, it stops.

And then you age out and live out a pretty darn active, healthy, long life.

>> Is there only one pattern to also to multiple sclerosis, or are there variations in the way the disease goes and how it's classified?

>> Great question.

I'm going to try to make it simple for the sake of.

>> Don't worry, we know you're neurologist, so go ahead, complicate it for us.

>> Well, I kind of break it down to two two main classes of Ms.

Yes, we have highly inflammation driven relapsing multiple sclerosis.

And then we have this kind of understory of progressive multiple sclerosis.

That's slow.

Insidious is kind of a big word we use.

And it's kind of under the surface.

We think that most patients with Ms.

nowadays have a component of both.

Some are very inflammatory and relapsing and are prone to attacks.

Others are very progressive.

And it's just a slow decline over years.

Okay.

So there's nuance within those categories.

But those are the two main types.

And we definitely scientifically understand relapsing multiple sclerosis much better than progressive multiple sclerosis.

>> Are they both caused by the same thing.

And what is that.

>> We don't know.

Inflammation.

If you go back 30, 40, 50, 60 years to science animal models, inflammation became the target to treat multiple sclerosis.

So our current therapies that have just expanded massively all target inflammation.

And we're doing a pretty phenomenal job at stopping inflammation.

Progressive multiple sclerosis isn't understood as much.

And we need better science in order to create therapies to stop some of our patients that every few years, like, dang, I can't do that anymore.

Dang, I can't do that anymore.

>> So, Yvette, what are you doing then with the non-medical things to help that patient and the patient's family?

Because I'm going to assume that it's not just one individual who's involved with multiple sclerosis, but rather the whole group family unit is involved by this.

>> Everyone is involved.

Yes, everyone is involved.

The most important thing is to make sure that everyone has an understanding of what is multiple sclerosis for that individual, and to understand the, the, the symptoms more than anything.

You know, one of the biggest complaints is when people have fatigue and no one around them understands the level of fatigue.

They'll say, oh, I went running ten miles.

I'm tired too.

It's not the same, not the same.

But the thing is to provide there's so many levels of support that that person will need in order to succeed.

I mean, you can manage your Ms.

today.

It's a chronic disease.

It can be managed with with today's treatments, but it involves much more than just the medical aspect.

You have to look at the the day to day living aspects, employment.

How is that affecting, how is that affecting the person?

Financial stressors you want to look at family support.

Is there any are there children?

Are you young?

Are you wanting to have children?

Are you a grandmother that's just been diagnosed and you have adult children?

So it just depends on the individual.

But it it it's it's many, many factors that play a role in successfully managing your disease.

>> I want you to tell me a little bit about the Norton Neuroscience Institute Resource Center, because from what I understand, this is a rather special unit when it comes to managing patients with multiple sclerosis.

So what's involved here?

Tell me about the various levels of care.

>> So we try really hard to look at the person as a whole, not just the disease.

And it's there's several prongs to that.

We want to make sure that they have the information that they need to be well informed, so that they can make the decisions that are right for them.

But it's not just the disease.

We don't want them to be defined by it.

So we have to look at all the other aspects.

And so at the resource center, we have social workers who will be the advocates for the patient.

If that patient needs to address issues like access to health care for example, just being as simple as possible, like do they have transportation to get to their appointments?

Do they have food in the home?

Do they have the financial means to support themselves?

So we're looking at every aspect because it's not enough for like Doctor Robertson to meet a patient, diagnose them and treat them.

You have to look at their life and you want to make sure that they are being well supported from every aspect in order to send them on their way to success.

And and it's of no value for him.

If we can't address that, the patient isn't letting him know I can't afford these meds.

So I'm going to play the eeny, meeny, miny, moe game because I don't have the money every month to pay for these medications.

Is there prescription assistance for these pharmaceutical drugs?

Is there financial assistance from not so much the resource center, but from there are many agencies in our town.

Do we are we familiar with them?

Do we tie in our patients with these local agencies that do lovely work, whether it's a food bank or if it's task three, getting them the transportation that they need.

So we're we're looking at every aspect of the individual.

So that's the social part, the social work aspect of it.

But we also want them to have therapeutic classes.

You have to take care of the spirit and the mind.

And so for me, it's very important that these patients have art therapy, music therapy.

We do workshops where we're not even going to talk about a disease.

You're just going to go, you're going to have a nice time, you're going to paint a ceramic and you're going to meet friends.

And those friends guess what?

They have a universal thread with you.

They're experiencing the same thing as you, and you'll make friends who understand you.

And so we have made many connections for people friendships.

We have a men's group that has been meeting for the past 15 years for coffee.

They just met on their own.

They're just going separate.

They went rogue on us.

They stepped outside of the support group and they meet for coffee every Friday.

What a lovely thing that these men are, are meeting with others who who are sharing the same experience as them.

And then we have the exercise component.

We want you to be your physical well-being.

>> With physical therapist.

>> We have some classes are led by PT, OT, physical therapy, occupational therapy, art therapists.

>> Do you have to be a patient of Doctor Robertson?

No, or you can be.

Someone in the community can come in.

>> It doesn't matter.

Our classes are free of charge to anyone who wants to join.

>> Fantastic.

Doctor Robertson, I want to go back and revisit something you said.

It sounds like an integral part of the treatment was using anti-inflammatory medication.

Are there other things that you have to bring to bear in managing the patient or controlling symptoms in that patient with multiple sclerosis?

>> Sure.

That I have to unpack that question just a little bit, please, to treat the disease.

I sometimes tell patients my number one, two and three job in clinic is to get on an appropriate therapy to stop their disease where it is, we're trying to prevent any new symptoms from starting moving forward.

That's the biggest job because these these treatments have some side effects we need to monitor for.

And some of these medicines have complications that can be dangerous really.

So my biggest job is making sure somebody is on a drug that works for their story and is not causing problems.

Then my four, five and six job is, how do we get the most out of every day?

And that's where it's priceless to have access to the Norton Neuroscience Center, because, you know, we have a limited time in clinic and we're coaching on nutrition, we're coaching on exercise, we're coaching on getting to the pool workout or getting to music therapy or Lego therapy.

And instead of just suggesting it to patient and sending them out the door.

At this point in my career, I can connect to Yvette baby, which is the the resource center, and then they can run with it from there.

To still unpack the question, our patients, although we celebrate stopping the disease where it is, a lot of our patients do have have a lot of disability.

And so we're managing bladder function sometimes bowel function, spasticity, pain, and some of that sadness and frustration that comes along with it too.

So we we manage a lot.

But when we can connect to other clinicians, specialists, we get patients out there to get the most out of every day within their Ms.

story.

>> What do you see that's down the horizon on the horizon for us as far as care for these patients?

>> Sure.

It's a big question.

Take your time.

That's a big question.

Scientifically, I feel like going back we've done a good job, not me.

Other smarter people have done a good job of identifying inflammation as a driving force behind it, creating medications that are really effectively treating our relapsing multiple sclerosis patients.

So we've done a good job of that.

However, there's a part of our patients that don't have effective treatments, and we're not reversing damage.

So down the road with good science, asking the right questions, maybe revisiting some old questions, I think there's two things we could really make an impact on.

One is treating progressive Ms.

better.

The second is how do we repair some of the things that have happened?

How can we improve spasticity or improve spinal cord function or improve vision function?

And there is science that's probably five, ten, 15, 20 years in the making.

If we can just pour into that and we might have effective treatments to help people get better, not just stop them from getting worse.

>> So, Yvette, yes, the real question, I wonder is how do we identify that person then with very early in the course of their disease, with their symptoms, so we can stop it then, or even predict who is going to develop multiple sclerosis?

What is the role of changing environments and family history as you see it?

>> I don't think I can speak to that, but I can tell you I can only use myself as an example.

You know what?

What is fact from years ago is not fact anymore.

So but like the closer you live to the equator, supposedly the less mis you will see, right?

And if you move at some point in your early life, Ms.

can affect you regardless.

But in my case, you know, my father also had a mess and my family is Cuban, so I don't know how much closer you can get to the equator.

But he moved as a young man to New York City.

And so I don't know what role that played there.

And then it's also not familiar.

It's it's not a given that you're going to have Ms.

because your parent has it.

But I got it as well.

>> So family history a bit of a role.

Environmental factors in terms of climate.

What about pollutants and things.

Are that a factor.

>> Yeah.

So you're asking great questions and I have incomplete answers.

Family history plays a role but it's a small role.

Yes.

The equator question is actually quite interesting.

It seems to be where you grew up.

Pre-puberty.

So if you move at age 20, your risk is where you grew up.

If you move at age two, you kind of acquire the risk of your new environment.

That may link into vitamin D that humans process mostly through sun exposure.

So higher rates of vitamin D when you're in the sun, a lot less vitamin D when you're up in Alaska.

And then toxins, pollutants, viruses is kind of that big question.

And we don't have great answers.

You know, one of my mentors every decade chases a new infectious agent in his research lab.

He's like, I got it this time.

Nope, that's not it.

I got it this time.

So it seems to be a lot of factors coming together in an individual to result.

>> In why Epstein-Barr virus, why is that seem to be always the one everybody talks about.

>> So Epstein-Barr virus isn't terribly controversial.

We've known a relationship between EBV and Ms.

for prior to my training.

Even, you know, 30 years ago, it seems like Epstein Barr is a necessary step to getting to multiple sclerosis.

But Epstein-Barr causes cancers, other autoimmune problems, so it's not the direct cause.

For example, 90 to 95% of humans have Epstein-Barr virus in them.

So if that's what caused multiple sclerosis, we would have 290 million people with Ms.

in the country.

And then Epstein-Barr is getting interesting research as well.

Should we be vaccinating people?

Well, it depends.

If we can create a durable vaccine that lasts throughout the life cycle, or should we be treating diseases like multiple sclerosis as virus infections?

And that research is is happening?

I don't want to say was happening.

There's a lot going on.

>> But well use of vaccines is of course a non-controversial topic right now.

Why are women more than men?

>> I have no idea.

I have no idea.

But yeah, 3 to 4 times more than men.

>> You see a difference in racial groups.

>> We do.

We do.

The African American population.

I believe that the disease is more progressive in African Americans.

And I don't, I don't know, percentage.

>> Why did you find the percentage is equal in both groups as far as who gets multiple sclerosis and who doesn't?

Whites and blacks.

>> Mostly Hispanics, mostly Caucasian.

>> Mostly Caucasian.

Interesting.

>> I might interject.

There may be some some historical bias also just based on access to care.

Yeah.

So some of those questions are being addressed to try to try to write some historical.

>> So the diagnosis is not having been made.

>> Correct in previous generations, leading to a higher suspicion maybe missed in certain patient groups.

>> Yvette, from your perspective, with about a minute left here in our discussion, what is the one thing or two that you want us to make sure we know?

>> I want anyone out there who thinks that they suspect that they have Ms.

or are living with Ms.

I want them to know that things will be okay.

Okay.

The majority that there is hope.

There is so much research going on now.

We have come a very long way from when I was diagnosed.

From 1989 till now, there were no treatments at all when I started out the first six years, but from 1994, 1995 to now, it is a world of difference.

And we're able to actually, I won't say stop, but to control it from progressing and worsening.

And this gives you peace of mind.

>> David what do you have to say?

>> I think Yvette said it beautifully, sort of piggyback on that.

Sometimes when I make a new diagnosis, I ask somebody, what's the vision you have of Ms.

And they'll mention a celebrity who may have passed away.

They'll mention an aunt or uncle who's had a terrible course.

And today's world, I say, okay, take that idea and squash it, because we're going to do things differently.

So this generation will have much greater longevity, significantly less disability, with some frustrations along the way.

But that last generation, it's very different compared to what's happening moving forward.

>> So you tell a person you can live a life if you have multiple sclerosis, correct.

You can live a good life.

>> Yes.

>> Without a question.

>> I'm proof.

>> You're proof of it.

I must admit you are proof of it.

Thank you.

Know, thank you very much.

You know.

And thank you both for being with us today.

I think this has been the most interesting discussion for me because, as you were saying, my perception, even in the business, is one of pessimism, but now it's optimistic about what's going on.

So thank you.

Thank you very much.

I'd like to thank you for being with us today.

I think that you would agree that multiple sclerosis is a complex disease with many possible causes, though a cure is not possible, early identification and identification and intervention can improve the quality of life for the patient and also for their family.

If you wish to watch this show again or watch an archived version of past shows, please go to ket.org.

If you have a question or comment about this or other shows, we can be reached at Kentucky Health at ket.org.

While I look forward to seeing you on the next Kentucky Health, I hope in the meantime that if you have any questions or inkling that you may have symptoms suggestive of Multiple Sclerosis, please see your physician get treatment early and or recommend treatment for friend.

Thank you very much.

See you next time.

>> Kentucky Health is funded in part by a grant