Diagnosis (2019–…): Season 1, Episode 7 - Paralyzed - full transcript

[whirring]

-[woman] You doing okay?
-[man] Yes.

[whirring continues]

[Lisa] Being paralyzed
can be absolutely terrifying.

It's like your own body is betraying you

at this really fundamental level.

Most of the time,

what's causing a paralysis
is pretty obvious.

You've had a stroke,
or there's a spinal cord injury.

But sometimes
it can be completely invisible,

and that makes those cases
very hard to understand.



For this last episode,

what I want to do is look at two patients

who have very different
kinds of paralysis.

Both have had to give up careers that
they loved because of their condition,

and both live right here in Connecticut,

which means they have access
to some of the best doctors in the world,

and still they haven't been able
to get a diagnosis.

[man] When you think about
the brilliant people

that have looked at me,
you turn around and say,

"Boy, this is a real oddball case."

[woman]
I've seen 35-plus medical professionals,

and they're not telling me anything.

And I just...

I feel that there's got to be
somebody who knows.



[woman] This is gonna be the harder part.

[man] Right.

[beeping]

[woman] I want you to get these up
as high as you can on your thighs.

He's gonna do it all on his own.

It's very hard for a paraplegic--

...just holding up like that.
I'm really...

[woman] This is one of the first steps
to getting dressed on his own.

All right, John.

And stay forward. Forward's your friend.

-Always going to say that.
-[man] Always stay forward, yeah.

Get them up a little higher.

-Oh, even higher?
-Yep.

[man]
When this all started, it definitely...

took me by surprise,

and I never thought...

I'd not walk.

It's something I did my whole life.

I'm athletic.

[woman] Now pull that side up.

Yeah!

Good.

[Joe] Two years ago,

I started to get pins and needles
in my feet.

It didn't affect my life.

Still was able to do
whatever I wanted to do.

I wasn't a burden on my wife
or my two daughters.

But then a year later,
this numbness went up to my knees.

Now it's progressed farther up,

and all of a sudden,
I'm dealing with paraplegia

from my waist down.

Good. And now you can push them off.

[Joe] And...

unfortunately...

I have incontinence.

A few months ago, they did a procedure
to try to figure out my neuropathy.

Unfortunately,

it just happened to cause
a terrible blood clot,

and then, all of a sudden,
my body crashed.

My organs shut down.

They called the priest.

-[woman] That night was very scary.
-Right.

We didn't know
whether you were gonna make it.

The doctors revived me,

and...

you know, I'm alive to talk about it.
Um...

But the next three months,
I was in the hospital.

I just had to get better,
had to get healthier.

So,

I haven't been home in...

five months.

[woman] It's very scary.

All of the doctors
really don't have any diagnosis.

We've gone long distances.

We haven't just gone to one doctor.

[Joe] Okay.

I guess I am an enigma
because we went to Mayo, Yale, and Boston,

and as a healthcare provider
and a dentist,

I'm a firm believer in Western medicine.

I think we're blessed
to have the technology

and the brilliant doctors
that we have in this country.

So, if they can't figure it out...

how am I gonna figure it out?

[woman] So, have we been around
for a really long time on this planet?

[girl] No. Plants are the oldest thing

-on this planet.
-[woman] Yeah.

These first plants,
they were single-celled organisms.

-[girl] Single-celled?
-They were kind of a bunch of slime.

[laughing]

That's pretty much what it was,
is this slime.

Like, when we go down to the brook, okay,

and there's, like, that mucky
sort of slimy stuff?

That's kind of
what all the first life was like.

But there were little teeny-tiny things
that were able to thrive.

Now they're super big.

-Mammals.
-Mammals.

I'm dealing with an undiagnosed condition

where, um...

any part of the right side of my body,

from my feet up to my face,

can give out at any point in time
with no warning.

And usually my face will start melting.

[sighing] Okay, so...

There are times when...

my hand will just kind of curl up,

and I call it my T-Rex arm.

It just kind of curls up
in this weird way up here,

and I'd have to manually undo it.

[girl] Just one squirt of Dijon, right?

[Ann] One squirt of Dijon,

but you should put that on
after you put on the cheese.

Stairs scare me.

I'm afraid that I'm gonna lose the ability
to figure out where my foot is in space,

and it's gonna get caught
on the edge of the steps

and I'm gonna go tumbling.

I have actually fallen...

um, on several occasions.

-Drink your juice, Mom.
-Yes, baby.

[girl] It sometimes can be scary.

Like, when Mommy's on the floor,
it's very scary.

I have to call Daddy,

and it makes me cry. A lot.

The hardest part is...

that that's my...

life partner,
and it's hard to see her in pain.

I love that lady, though. I do.

I just want her to feel better.

[Ann] So, yeah, we're not able
to do a lot of the...

deep sort of forest stuff
that we used to do,

looking for edible plants and foraging,

mostly because I don't feel safe
going out into the woods

'cause I don't know what's gonna happen.

It all started two years ago

with pain in my chest,

heartburn, which I had never
had problems with before.

Within a month,

I started to notice
that my face was changing.

Like, I'd look in the mirror
and I'd be like,

"Hmm, that's weird. My lip is weird."

And I talked to my doctor.

He's like, "You have full facial paralysis
on the right side."

He's like,
"You need to go to the emergency room.

You might be having a stroke."

So, I get into the car,
and I'm not really worried about it

until I get on the highway
and my eye on the right side shut.

"Oh, my gosh! Why isn't it opening?"

And I could feel my eyelid fluttering.

I couldn't open it to save my life,

and I'm out in traffic, trying to merge
in traffic, and now I'm scared.

I got to the emergency room,
and the thing that was happening

is that facial paralysis,

that full facial paralysis
that I had coming in was coming...

and going.

Well, they put me into the stroke ward,

and they gave me a CAT scan,

which came up negative.

They gave me an MRI,

which came up negative.

And the other neurologist came in

and was just like, "Well, you know...

I think you're just stressed.

I think all of this is just stress.

You're just... It's just psychosomatic."

Really.

Being a person of color,

people tend not to take you seriously.

In fact,
I feel like every woman in this country

knows what it's like
to be pooh-poohed by a doctor

'cause it's happened to, I would say,

and I don't think I'm exaggerating
when I say every woman in this country,

at least once.

This is the reason
why I don't trust doctors.

[dog barking]

[Lisa] It was very clear to me
when I first got to know Joe and Ann

that their attitudes about the medical
community were quite different.

I understand Ann's point of view.

We often hear

that women, because most doctors are men,
women feel like they're not really seen.

People of color, because in this country,
most doctors are white...

So, people of color often feel not heard.

So, the question becomes,

is it possible that Ann's distrust
of the medical community

would affect her ability
to accept observations from that community

simply because she doesn't trust them?

Joe, on the other hand,

is actually a part
of the medical profession.

He has been a dentist for, you know,
many years.

Joe is the very definition
of a good patient.

I mean, he actually was almost killed
by the doctors trying to take care of him.

But it didn't keep him
from trusting them enough

to go back to them and say,
"Okay, what else you got?"

In searching for a diagnosis,

both Ann and Joe have collected long lists
of diseases they don't have.

Joe's doctors have already
ruled out multiple sclerosis.

It's not Parkinson's disease.

It's not a whole bunch
of these autoimmune diseases

that they've thought about.

At this point,
Ann has seen over 30 doctors

and, really, so many of the most
obvious causes have been ruled out.

It's not a seizure.

She doesn't have multiple sclerosis.

It's not lupus.

And now both Joe and Ann
are really desperate for a diagnosis.

Ann's paralysis can happen anytime,

anywhere.

Joe's is constant,

but it's been progressive,

and neither Joe nor even his doctors
have any idea

where this paralysis is going to stop,

and I know that worries Joe
and his family.

[Linda] He tries not to show it,
but there are times that he'll tell me,

"I'm really scared."

[woman] Yeah. He doesn't like to talk
about it because there's so many unknowns.

You don't know whether...

you know,
whether it is gonna continue to get worse

or what's happening, you know.
Like, is it gonna...

If it's moving up,
is it gonna take over his heart area?

[beeping]

All right.

[Linda] I don't like to think
of some of those scarier things

that could happen.

You never want to miss a day.

Any day that you can do something,
you have to move.

You know, you have to keep using
what you can while you have it.

[woman 2] I think we've all seen
a change in him, though.

This has not been easy for him.

He's not somebody that likes to...

sit around and, um...

just, you know... I don't know.

He's a positive person,
and so he tries to be upbeat,

but I think, like, his work was his life,
and he can't work.

[Linda] Joe has always been
a fairly big, strong guy.

He was a dentist,

everybody knew him as that,

and to have to give that up
was really hard for him.

[Joe] Being, you know,
the neighborhood dentist, Dr. Joe...

A lot of great times
taking care of people.

It's been a good ride.
That's why it was hard to give it up.

It was a rough first year.

I was in a wheelchair,
but I could still transfer to a toilet,

or transfer into the car.

But when I finally developed incontinence,

then I thought it was gonna be much harder
to try to function,

and I said, "All right,
I've gotta take care of my health,

and I can't be worrying about...

dentistry."

I had a hard time grappling with it.

I can't mow the lawn.

I can't go for a boat ride.

If it wasn't for my girls,

[stammering] I don't think I would have...
You know...

I wouldn't be as positive as I am,
that's for sure.

It's a crazy emotional roller coaster.

[Lisa]
Looking through Joe's medical records,

it became clear that his case was much
more complicated than I initially thought

because, as it turns out,
he has not one serious medical problem

but two at the same time.

First of all,
he has this very strange paralysis,

which is a type of peripheral neuropathy.

It's a problem with the nerves.

But also, about 15 years ago,

Joe was diagnosed with a progressive
and incurable blood cancer

called Waldenstrom's macroglobulinemia.

Waldenstrom's. They thought
he only had a few years to live.

[Joe] They started me
on this clinical trial,

and then, long story short,

I got lucky and I stayed alive.

Everything was good. Taking my medicine.

I thought I had this licked, then,
all of a sudden, 15 years later,

this neuropathy comes out of the blue
and my life as it was...

totally changed.

[Lisa] I have to dig a little deeper
in his records

to see if his cancer, his Waldenstrom's,

is in any way connected
to this neuropathy or paralysis.

Recently, he's developed
a little bit of sensation in his toes,

so it's not clear what's happening there.

[Joe] I don't get it.

You know, how come I'm wiggling my toes
if I can't move my legs?

[Lisa] I hope that there's somebody
out there in the crowd

who can
put these pieces of the puzzle together.

"Certainly, when Joe,

a dentist in Fairfield, Connecticut,

first noticed the feeling
of pins and needles in his feet,

he had no idea that he would be struggling
to walk just a year and a half later.

What do you think is going on with Joe?"

I have paraplegia from my waist down...

I am a doctoral student here
at the Harvard School of Public Health.

I am a board-certified neurologist.

I'm a graduate student at Columbia
studying nutrition.

What caught my interest in the article
about Joe was similar symptoms.

His journey and his illness
immediately reminded me of my own mother.

The article was shared on an online
chat group of Waldenstrom's patients.

It rang a bell, of course,
because I have the same Waldenstrom thing

and the same neuropathy thing.

[woman] There's an entity called

progressive multifocal
leukoencephalopathy.

And finally the diagnosis of my patient

is a condition we call
transverse myelitis.

Her doctor said that she had

a rare variation
of Guillain-Barré syndrome,

and it's called CIDP,

which stands for chronic inflammatory
demyelinating polyneuropathy.

I think the medication he's on
for his cancer

is controlling
whatever other disease is going on.

Ibrutinib, which is the drug he's using,
and it's a miracle drug for him,

but ibrutinib has not really been studied
that extensively

in terms of these kinds of side effects.

It's fairly new,

and I don't think anybody knows
what's going to happen with that drug.

A lot of people have
peripheral neuropathy,

but a lot of people don't have anything.

It's pretty scary.

I wish you the best of luck.

I hope something is found that will
help him and make his life better.

Never, ever, ever give up.

[Lisa] The two most interesting
possibilities from the crowd

were either chronic inflammatory
polyneuropathy, CIDP,

or a side effect of the ibrutinib,

the medicine he was taking
to treat his blood cancer.

The most popular suggestion was CIDP.

It's a neurologic disorder
caused by an injury

to the protective coating
that surrounds nerves

as they go from the brain
to the periphery.

However, Joe's doctors are certain

that he doesn't have
Guillain-Barré or CIDP.

The other theory from the crowd

was that Joe's paralysis
might be a rare side effect

of a medication he's been taking
for this cancer, ibrutinib.

Side effects of ibrutinib
could be a possibility.

[Lisa] Interestingly,
currently Joe's not taking the ibrutinib.

He had to stop it when that blood clot
just about killed him,

and his doctors at Yale
tell him that he needs

to stay off it until he recovers fully.

[man] Joe went on a clinical trial
for ibrutinib,

which significantly helped him
for many, many years. Um...

And he really continued it until he had
this very prolonged hospitalization.

And it really was a discussion
between Joe, myself,

and certainly his doctors up in Boston

about whether we should
stop this medication.

We did eventually stop the medication,

and, really, he's been off it
for four or five months now.

[Lisa]
Even though Joe has been off the ibrutinib

and his legs remain
completely without sensation,

that doesn't mean
that the crowd's theory isn't right.

It can take up to a year
for nerves to repair themselves.

Maybe he's getting feeling back
in his toes

because he has been off the drug.

Either way,
right now, Joe is at a crossroads.

He's recovered
from his terrible blood clot

and so could restart the ibrutinib,
but if the crowd is right,

staying off the drug might be
his only chance of walking again.

But if he does decide
not to restart the ibrutinib,

there's nothing controlling his cancer.

It's such a tough decision to make.

He really needs to go back to his doctors

and get their thoughts
on what he should do.

It should be interesting. Um...

Hopefully, if God is good
and I stay off the drug,

then I've got a... shot.

[Eric] I was going through a drawer
at work today,

and I found when we were in the paper
for the home school evening,

like, six years ago this week
or something.

-[Ann laughing]
-[Mary] I didn't know that.

Because you were, like, three.

[Ann] That's one of the things
that I miss the most.

I hate the fact that my mind doesn't work
the way that it used to.

My passion is writing.

I really like being an editor.

I've won awards for poetry,

essay writing, short story writing.

But now I just can't take
contract work anymore.

I just don't feel confident
taking contract work.

And so we have financial concerns.

Even the best health insurance,
it's still expensive.

I can't afford it.
I can't afford the co-pays.

[Lisa] Right now, Ann is struggling,

both physically and financially,

and so I don't want to wait any longer
to bring her story before the crowd.

"'You might have had a stroke,'
the doctor told the 44-year-old woman.

'The right side of your face
is paralyzed.'

Ann nodded in agreement.

She hardly recognized
the face she saw in the mirror."

My name is Ann.

Um, I'm from Connecticut.

The right side of my body is failing me.

Can you see me? Hi!

I'm a neurologist at Stanford University.

I live in Australia.
My specialty is hematology.

I'm a consultant neurologist
in London, UK.

I have a PhD in neuroscience.

A lot of the symptoms that Ann presented
sounded very familiar.

I hear that story
and see that story a lot in my clinic.

It sounded a lot like what I experienced.

[woman] Really what came to mind
was hemiplegic migraine.

For a hemiplegic migraine, some people
actually get weakness on the face,

arm, leg,
and often it happens on one side.

The problem has to do
with the functioning of the nerve,

not the overt structure of it.

[man] She had the face droop.
It's reminiscent of what happens

in a large percentage of cases
with Lyme disease.

To me, it's not outside
of the realm of possibility.

We live in Lyme central here.

[Ann] Okay.

Hi, I'm Alana.

I live in Virginia, and I'm a student.

One day in January, my face,

the left side of my face
just started drooping.

The entire left side of my body
was getting weaker.

My speech was getting weirder,

and I was having a hard time
swallowing my food.

We see this neuromuscular person,
and she's like, "It's all in your head."

It's a diagnosis of
functional neurological symptom disorder.

[Lisa] The crowd came up with
quite a few possibilities for Ann,

but, really, her doctors had
already considered and dismissed

all but two of them.

First was Lyme disease,

an infection caused by a kind of bacteria
that's transmitted by ticks.

Well, Ann's intermittent paralysis
is not typical for Lyme infection.

Lyme is famous for causing all kinds
of very strange and interesting problems.

And the other possibility is that Ann has
a functional neurological disorder.

That is, it's not an infection,
it's not a tumor,

it's not some pathology.

It comes from the outside to attack you.

It is, instead, something
that your body is doing wrong.

[Ann] It's not functional disorder.

That's not it. It's not... That's not it.

So...

[Lisa]
When some patients hear the diagnosis

"a functional disorder,"
it has a really bad connotation.

What they hear is that it's all
in your head, that they're crazy,

but, of course, that is not what it means.

[Ann] I've been saying this
from the beginning,

that I really think it was Lyme.

And it's like I feel like I need to see
somebody who's a specialist

-for them to tell me I don't have it.
-Right.

Yep.

[Ann]
I know that there is a Lyme expert nearby.

I want to reach out to her
and maybe share the article with her

and say, "Look,
the most popular idea was Lyme," you know?

"Hey, Lyme. Could that be it?"

-And--
-We felt like we'd never really been...

been, like, sufficiently tested.

I mean, we had tests,
but they all were negative,

but we'd heard lots of stories
about false negatives.

Right. Especially with the blood tests.

[woman] So, how are you both doing today?

-[Ann] Today's a good day.
-[Eric] I'm fine.

[woman] I do have the test.

All right.

I didn't know, Ann, if there's
anything else you wanted to talk about,

any questions you had.

I did just want to really point out
that, like, I have been out in deep woods

'cause I go looking
for mushroom varieties,

so it's not outside
of the realm of possibility

that I would have been, like,
bitten by a tick

-or anything like that.
-Right.

So, prior to this appointment,
I did order a test for Lyme.

It was negative.

We're sort of in a process of elimination
at this point.

I know how much you've gone through,

but most of your symptoms
are coming in flares

-and not slowly progressive.
-[Ann] Right.

-So, it didn't seem to fit that diagnosis.
-Right.

[Ann] Once again,

no answers.

Merry Christmas.

So...

But it is what it is.

-[woman] I'm sorry.
-[Eric] It sucks,

and we want to know what it is,
and we want to...

get better.

If you don't have a diagnosis...

I can't go into a hospital

if something goes wrong,
like it did before.

Oh, and they don't know what it is.

They automatically assume
that you're just crazy

and trying to seek attention.

It makes me afraid to go to the doctor.

I don't want to see a new doctor.

I don't want to have to justify myself
to somebody else.

I'm tired of it.

It's... [sniffs]

-[Linda] What would you like to drink?
-[Joe] I would like some--

You want tea, maybe?

Yes, that'd be great.

[Joe] No! No! Excuse me.

You see this flower over here?

This flower will cause you to die, so...

Do you... You don't want to die, do you?

Or get Waldenstrom's
or something like that. No!

No.

-No. Come on.
-[yowls]

[Joe] Having this crowd response

about the side effects of ibrutinib,
I'm hopeful.

We're going up to find out tomorrow
more from our doctor.

Like, hopefully, I can continue
to stay off the drug

and see what happens,
see what comes out of it.

Maybe get back my ability to walk.

Uh...

Or not.

So, that's where I am right now.

[Linda]
Joe will tell me, "I'm really scared,"

or, "I'm nervous," or whatever.

He tries not to show it
in front of the girls.

-[cracking]
-Oh!

-That was your shoulder!
-Cracking!

[dog barks]

[Joe] There's no reason to be,

you know, upset, mad.

You've got to keep a positive attitude,

and you've got to work hard
with whatever the doctors say.

So, I just hope I'm on the right track.

[woman] Kitchen. You ready?

[Joe] Good.

[Linda] Do you want
another cup of coffee, or--

[Joe] No, I'm all right.
I'll get something later.

[Linda] I don't know that the neuropathy
is connected to the medicine

he was taking for the Waldenstrom's.

But he wants to walk...

more than anything.

He doesn't want to just say, "I'm happy.
I'm content to be in a wheelchair."

He really wants to walk again.

[Joe] We're almost here!

[Lisa] Right now,
Joe's going to meet with his oncologist

to get the results
of his most recent blood tests.

If his cancer remains under control
while he's off the ibrutinib,

then he might be in the clear
to just stay off it

and see what happens.

-[woman] In here.
-[Joe] That's okay.

[knock on door]

-Come in.
-Come in.

-[doctor] Hey, Joe.
-How you doing?

[doctor]
How you doing? Good to see you.

-Good to see you, too.
-Good to see you as well.

Have you been sleeping well?

[Joe] Yes.

-Too well.
-Too well?

[Joe] So, has there been any other people

that have been on
Waldenstrom's medications like ibrutinib?

Have you seen side effects?

Um...

You know, I have not seen
any ibrutinib-related neuropathies.

Um, we now have patients on it
for seven, eight, nine years,

um, and that's not a typical side effect
that we're seeing with ibrutinib.

And, actually, in people
that start ibrutinib from the beginning,

it seems like patients
are more likely to discontinue a drug

not because it's not working anymore.
It's really usually toxicities.

And so about maybe 30% of people,
20 to 30% will discontinue.

[Joe] But if...

If the ibrutinib is causing
some of the toxicity...

you know, who knows?

Maybe I don't need the ibrutinib anymore.

[Dr. Huntington]
We did blood work about a week ago.

Your levels, from my end, look okay.

As long as you're making progress, um...

and the levels or new symptoms
aren't arising, I think we should hold off

-on treating your Waldenstrom's.
-[Joe] Okay.

-That makes sense.
-Yeah.

[Dr. Huntington] I think we need
to continue with close surveillance.

Right now,
we're just watching his Waldenstrom's.

It does not seem to be
that he is symptomatic.

His IgM level is not particularly high,

so I really am focusing on managing him

without actually
treating his Waldenstrom's,

and we'll certainly treat him
if signs of clinical progression occur.

There's also some other oral medications
that we could consider as well

that work on different mechanisms,

so I think it's likely that
we won't use ibrutinib anymore on you,

but it's more just if we can minimize...

If the risk is really small,

it still might be there.

Why not use something else

-that we think will work just as well?
-[Joe] Right.

[Linda] Right.

All right, Doc. Thanks very much.

Thank you so much. Thank you.

-Good seeing you both.
-Thank you. You too.

[Joe] I'm very happy about that.

Let's give it a shot.

I'm hopeful, anyway.

And that's the key.

You know, some people say

that it didn't take overnight to cure you,

-so...
-[woman] Yeah. No, definitely. Yeah.

[man] I sensed from the videos
it was very...

uplifting.

-[woman] Yeah.
-I don't know if you feel the same way.

[Joe] No, definitely.
All the people that did--

[Linda]
They took the time out of their, you know,

lives to write in.

[woman] I want to get back
and thank every single one of them.

That's the beauty of it.

-[Lisa] Hey. How are you?
-[Eric] Hello.

Nice to see you.

[Lisa] What, sit over there? Okay.

Okay.

Now that we're certain
that Ann doesn't have Lyme disease,

I want to meet with her and her husband
to talk about the other possibility:

a functional neurological disorder.

I know there's a lot of misinformation
in the world about functional disorders,

but I want to reassure her

this is a diagnosis which, if acted upon,

can be treated and possibly cured.

[Ann]
I have issue with functional disorder,

and the reason why is because...

functional disorder...

The term "functional disorder" is still...

associated
with this psychological condition,

and they are both interchanged. [laughs]
And it's just like--

[Lisa] Well, let's separate that
'cause it's not actually the same thing.

It's just, like, there's gonna be
an awful lot of medical people

who come in and they look at that,

and they just think, "Nutty."

"Crazy."

"Hysterical."

-You should not go to those doctors.
-[laughing]

[Lisa]
Can I just say, as far as I can tell,

-what it means?
-[Eric] Sure.

[Lisa] It means that

we can't, with whatever we know

and with all of our tools
and blood tests and MRIs

and all these fancy scans...

As far as we can tell,
everything works perfectly,

-and yet it doesn't function perfectly.
-[Ann] Right.

That's what I think it means.
To me, it's a great big ol' question mark.

-It's just a catch-all.
-Well, that's not actually true.

There are things that have been
shown to be effective

in functional illnesses...

for reasons that are not at all clear:

medicines and therapies.

So, it's not just a word.

-Okay.
-There are actually therapies for it,

but, you know,

I'm just a person with an opinion.
I'm not your doctor, right? So, I just...

You know, like everybody,
I have my opinions.

So, I'm not ready to rule this out yet.

[Ann] Okay.

I haven't ruled that out.

It's just trying to find somebody
who knows what the heck it is.

Do you know anybody? [laughs]

Do you know anybody
who's a specialist in that? I don't know.

Well, it seems like
you should be able to...

I mean, I don't know.

[Ann]
If there is a doctor who really feels

that they could figure out,
"Oh, this might tell us..."

This might either tell us more
about, like, what is there.

Like, this might say to us,

"Oh, well, there's blank, blank, blank.
This could indicate...

Now we know
what specifically we've got to look at."

Absolutely.

[Lisa] There's one doctor from the crowd

who knows a lot
about functional neurological disorders,

and I think that Ann and her husband
would really benefit from talking to him.

[video call ringtone]

Hi, Dr. Schneider. Um...

-I'm Ann.
-Hi.

I appreciate you taking the time.

-I'm not your patient.
-My pleasure.

I've had...

kind of a long list of physicians

who have told me it's functional disorder,

and, you know, they're seeing it
as a mental illness.

I haven't made any diagnosis for you yet.
I haven't seen you yet,

but that being said, the ideas

of what a functional movement disorder
or a functional neurological disorder are

have been changing over time.

-Right.
-They actually removed the requirement

that someone had to have
a psychiatric illness

as part of this disorder,

and, actually, the only requirements
are basically that you have, um...

symptoms that would be, on physical exam,

consistent with
functional neurological disorder.

I think one of the things that's
really just happening in our culture

is this slow understanding
that we've been working with

this dichotomous view of psyche and brain,

and it's just been with us for so long,

and slowly being able to untangle that

and say, "Well, maybe we're not really
talking about two different things."

That's reassuring to hear.

You know,

it's one of these things
where I'm just like, "Oh, great."

Every time I go in with a sickness,
everybody's gonna be like,

"Oh, no! We just don't believe you."
And it's like, "Oh, great! Perfect."

I hear you.

This is really
what an African American woman

who's got all the biases against me
really needs.

You're right. You know, I hear you,
and I hear the frustration

because I have a lot of patients
who've come to me

because I think
younger doctors are more open

to understanding functional disorder.

It's... Things are changing,

and it does require a little bit
of sometimes talking to people

and helping them to understand me
as a physician.

And, actually, if I examine you

and I think it's not
a functional disorder,

I don't have a vested interest
in what the diagnosis is.

I have a vested interest
in getting people better,

and so...

You know, so that's really what I enjoy.

Okay. All right.
Well, look, thank you for that.

What should be our next step?
You know, if you want to come and see me,

I'm more than happy to see you.

You know,
we could do at least a single consultation

where we go through things, we kind of
get a sense of what's going on,

and, you know, we can talk about

what would be
an appropriate treatment plan.

Okay, I will see, um...

I'll see about that. Um...

I appreciate you taking the time.

-All right. Goodbye. Bye.
-All right. Bye.

[Joe] Whoa!

They're moving.

[woman] Look at that.

[Joe] Wow. That's amazing.

Keep moving.

[Joe] I couldn't believe it,

but, all of a sudden,
I started to get some feeling in my foot

to above the ankle.

We're still gonna walk.

I don't know how long it's gonna take,
but we're gonna do this.

Maybe this neuropathy
really did come from ibrutinib.

I just see that...

there's hope at the end of the...

of the road.

Never give up.

[Joe] It'd give me a chance to golf again
with my brothers and all that good stuff.

And you still beat us that day.

I still beat you guys.

My daughter's stealing those cannolis.

[woman] Those chocolate chips are good.

Mmm!

Are you getting tired?
Do you want to go upstairs?

[Joe] Yes.

[Linda] Some people are paralyzed,

and you know that they're never
gonna be able to get it back.

-Love you.
-Love you too.

Thanks, buddy. All right.

[Linda]
With Joe, there is some movement there,

so I think he will walk again.

Hopefully! [laughs]

[Joe]
I've gotten responses back in my feet

and my toes,

in the beginning of my legs,

and they could feel my glutes firing.

So, those are all positives that...

maybe we can cure this thing.

[Lisa]
Hearing that Joe is able to move his foot,

that's a really exciting development.

It's hard to say whether this proves
the crowd's theory or not,

but no matter what, Joe definitely
got something from the crowd.

He got from them hope
and a sense of a new direction to pursue,

and that can make a huge difference
for any patient.

-[Ann] Hi.
-[woman] Pleased to meet you.

[Ann] It's Alana, right?

-Yeah.
-Hi. Ann.

Hi. Her dad, Scott.

Hi. Nice to meet you.

[Lisa] Because Ann really isn't going
for the diagnosis

of a functional neurological disorder,

I thought maybe she'd want to talk
with somebody from the crowd,

a woman who actually had this disease
and was able to take it on

and overcome it.

It's awesome to meet you.

-[Ann] Oh, cool!
-Yeah, I'm just...

[Alana] I had convinced myself...

I can't be the only person
that is just suffering

-from half my body not working.
-[Ann] Right.

Or there has to be somebody
who's had something similar.

And so reading your story
was actually really, really awesome

because I was like, "Whoa!

There is somebody
that's been through the same thing."

[Ann] Yes, it is very reassuring.

So, do you mind me asking, like,
a little bit about your experience?

One day, my face just started to droop,

and I just lost the ability
to really move the left side of my face,

and the MRI showed nothing.

And so we started going to more and more
doctors just to try to be like,

"What is this?"
And so we go to the neuromuscular clinic,

and the doctor there says,
"It's all in your head."

Well, this must be just coming up with it,

or it's just a result...
Psychosomatic, basically.

-Yes.
-[Ann] Absolutely. I relate.

[Alana] Yeah, and I was like...

I went home from that appointment,
and I just cried

because I was just like, "There is no way
that this is all in my head."

And on my second appointment
with the rehabilitation doctor,

he said, "Okay...

So I think it's this thing:
functional neurological symptom disorder,

which is extremely broad,
but it may help you get treatment."

[Ann] Did you experience that?

Like, afterwards, they would see
the functional disorder diagnosis,

and they would be like,
"Oh, you're just nuts"?

Well, I actually had
pretty good doctors after that,

which I was really lucky

because my physical therapist
understood what it was.

Right.

And I found that occupational therapy,
just for about a month and a half,

-really, really helped me.
-Okay.

I could... I was able to write again.

I had to relearn how to walk by myself.

I had to relearn
how to just use my muscles,

and it was so nice
relearning how to use my muscles.

I hadn't been able to do that
for a few months.

Just a combination of physical therapy
and occupational therapy

was just absolutely wonderful.

Amazing.

I'm so happy for you.

Don't believe people
that say you're crazy because you're not.

[Ann laughing]

-Oh, thank you!
-Yeah.

I appreciate the empathy,
and I appreciate, you know...

And I appreciate the uplifting advice.
Thank you very much for that.

[Ann] For the first time,

I feel that there is somebody out there
that understands.

If there's actually a treatment for it,

I don't know if I could expect that,
you know,

and I'm not really expecting that,
but that means that I've got options.

I can say, "Wow, let's try this treatment.
Let's do something."

[Lisa] Ann is considering seeing a doctor

who specializes
in functional neurological disorders.

I figured I could just test it
and see if that, you know...

That's a good one.

[Ann] I don't know. I'm not entirely sure.

[Lisa] Maybe not this week,
maybe not next week, or even next month.

The crowd has given her
this very good option,

but taking the next step
is a decision she has to make for herself.

Looking back at this experiment,
you know, it's really been...

an amazing ride.

I have to say,

the crowd performed extremely well.

You know, the responses we've gotten
have been from people all over the world.

In some cases,
they've given us the exact diagnosis.

We are happy now
to give you this news.

I don't even know what to say.

Thank you for everything.

[Lisa] Other times,

they've given us
a different way of looking at something

that no one else had thought of.

I really appreciate it.
Like, this has helped.

[Lisa] We've had people say,

"Oh, my God!
The same thing happened to me!"

He has the same thing I do.

[Lisa] They've suggested
different treatments.

Ooh-la-la!

I said exactly the same thing.

[Lisa] They also offered
a warmth and a compassion

that I think really benefited our patients
in ways that I never anticipated.

Don't ever lose hope!

We're off to the pizza parlor.

Who's coming with me?

[Lisa] At the beginning of this,
I thought that crowdsourcing

might be a way
to make the room just that much bigger.

It turned out to be hugely bigger,

so much bigger than I had ever expected.

Sometimes medicine has to be
a team effort,

and the very next diagnosis
could literally come from anyone.

So, you never know.

Someday, I may even need to ask you,

"What do you think is going on?"