[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?"