November 4, 2025 • 39 mins
Nika spent half her life battling a shape-shifting condition that plagued her in various ways for nearly two decades. Fighting chronic pain, fevers, fatigue, and even strokes. In her 30s, after a series of lymphoma scares, Nika thought she was going to die without answers. But, 17 years, 26 doctors and 37 procedures later - Nika was finally able to name her faceless foe.
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To find out more about IgG4-RD, you can check out IgG4ward! Foundation’s website at https://igg4ward.org/
You can also find Nika Beamon on her website here.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
Ruby.
Speaker 2 (00:09):
I was driving on the New Jersey Turnpike and everything
sort of went blurry. It was like somebody's stabbing on
the side of the head with an ice pick.
Speaker 3 (00:16):
She literally lost the ability to see doing sixty five
miles an hour. It's God holding the wheel at that point.
Speaker 4 (00:26):
The disease is like a crow flying through the dark night.
Patients go months or years incurring damage. In all of these.
Speaker 2 (00:35):
Organs, I can't see, and I'm in terrible pain. I
gotta get some more safe, so I just gotta keep going.
Speaker 5 (00:43):
How terrifying would it be to fight an unknown enemy,
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease that even
doctors couldn't identify. Nearly half of Americans from some chronic illness,
and many struggle for an accurate diagnosis. These are their stories.
(01:09):
I'm Lauren brad Pacheco, and this is symptomatic. Nika Beeman
van Shehek is a force to be reckoned with. In
all areas of her life, she has pushed herself to achieve.
She's an Emmy winning TV writer, author of four books,
and garnered a Peabody Award in her twenties for her
(01:30):
coverage of nine to eleven. Even as a young person,
Nika was tenacious and full of personality.
Speaker 1 (01:37):
I'm the oldest. I have two brothers.
Speaker 2 (01:39):
I have one that's exactly four years apart, and then
we have what we call the oops baby, who was fifteen.
Speaker 1 (01:44):
Years younger than me.
Speaker 2 (01:45):
So I was picking colleges and he was carrying around
stuffed animals.
Speaker 5 (01:49):
It's funny because I was going to ask if they
influenced your love of sports, But I bet you influenced
their love of sports.
Speaker 2 (01:55):
They have no love of sports. I'm the only one.
I always say that my father had me. I was
supposed to be his son. I was the one who
learned to fix things with him. I was the one
who was more adventurous and who left home and was
willing to go by themselves.
Speaker 1 (02:09):
I'm more of his temper.
Speaker 2 (02:10):
Unfortunately, so I was more of my father's son than
his own son's.
Speaker 5 (02:14):
And not just any organized sports. You choose ice hockey
and baseball once you get to boarding school.
Speaker 2 (02:21):
Yeah, I said to my father, there's really nothing to play.
And my father said, you played Little League when you
were a kid. I said, yeah, but they don't have
a female team. They don't have female softball. And he said,
you know what Title nine says, if they don't have
an equal or greater sport, then they have to let
you try out. So you go down there and you
tell that coach that he has to let you try out.
And so I went down there and said, my father says,
I have to at least be given a shot, and
they said, all right, then we'll give you a shot.
Speaker 1 (02:43):
And I made the team. And then by the next
year we had another girl.
Speaker 2 (02:48):
So you know, I kind of ruined the whole team,
or maybe improved it that much more.
Speaker 5 (02:55):
I know that, having read your book, you were very
close to both of your parents, who have both unfortunately passed,
but you and your father seemed to have a particular bond.
How did his raising you impact your personality?
Speaker 2 (03:14):
The greatest thing I think I got from him was
that I understood that no matter what your circumstances are,
and for him it was growing up poor and a
segregated South with one parent, that you can find a way.
He knew he wanted to do other things, so he
got on a bus and came to New York. So
at some point was homeless on the subway. He ended
up joining the police Academy, then going to the Air Force.
(03:36):
Then he got sick in the Air Force and ended
up having to come out.
Speaker 1 (03:40):
But he had done so many things. Then he decided
he was going to go to college.
Speaker 2 (03:42):
He was going to get a degree, and so he
got a job at NYU. He actually, when he was
at NYU, participated in the Freedom Writers to register people
to vote during the segregated South, and they made a magazine,
and the magazine ultimately got inducted into the Library of Congress.
And so I grew always seeing people writing and doing
those kind of things.
Speaker 5 (04:03):
At a young age, Nica was praised for her abilities
in writing. Her curiosity and investigative nature led her to
join the school paper and go on to study journalism
at Boston College. There, Nica was a standout student and
an active member of club sports teams. She was headed
towards the future at full speed, seemingly unstoppable. Around this time,
(04:31):
as you're getting ready to graduate from college, you start
noticing that something is a miss in terms of your health.
Speaker 2 (04:38):
In nineteen ninety three, I started having all kinds of
what I consider unusual symptoms. By the time I got
to senior year. I was like, I'm just always tired.
There's joint pains that I didn't expect to have. I
had dry mouth and dry eyes. My eyes would burn
to a part where my vision would actually get blurry,
which was strange because I had twenty twenty vision. And
then I started having these debilitating headaches that I thought
(05:00):
were migraines, and I'm like, what in the world is
happening to me?
Speaker 5 (05:04):
So You're frequently visiting the infirmary and getting no answers.
Speaker 2 (05:09):
No, I'm getting a lot of tests for a lot
of things, but all of them are coming out negative.
I didn't have mono, I didn't have meningitis, I don't
have hepatitis.
Speaker 1 (05:17):
So I started to collect things I.
Speaker 2 (05:19):
Knew I didn't have, but that wasn't getting me any
closer to what I did have.
Speaker 5 (05:23):
This was just the tip of the iceberg, as varying
symptoms began to disrupt her life, seemingly disconnected ailments that
would place her on the long, frustrating, twisting path of misdiagnosis.
Speaker 2 (05:38):
It wasn't until like a couple of years after them,
when I kept getting sick, that at some point other
people started to notice like this is happening too frequently.
As the years drag on, you realize that this is
not going away, like this keeps coming every time somebody
gets sick, I'm getting sick. And as you start to
really see the pattern.
Speaker 5 (05:57):
So at this point a few years in to this,
not feeling well is becoming a new normal for you.
But you move to New York City and are living
your life when out of nowhere, you end up in
the emergency room because of a massive bleed. What happened.
Speaker 2 (06:14):
I was very sick and I was having a hemorrhage
and they said to me, we think you have PCOS.
You might have ruptured assist and that's what the problem is.
And I said, oh, okay, so I have PCOS.
Speaker 1 (06:29):
I just need some medications. So they give me medication for.
Speaker 2 (06:31):
That, and I go, great, then I should be good,
except for our wasn't because what I learned at some
point was that we were treating a set of symptoms,
but not all the symptoms. So I'm going to a
doctor for headaches that he goes, oh, no problem, we
can just make your brain not know that it has pained,
so we'll give you this drug.
Speaker 1 (06:52):
And I'm like, Okay, no problem.
Speaker 2 (06:54):
That's great, And I go I'm tired, and somebody goes,
you know what's great for a fatigue? You can just
take some riddlin. You'll feel much better. You'll have the
energy you need. I'm just going to each individual doctor
and getting them to treat whatever symptom they treat.
Speaker 5 (07:08):
While Nika battles a mounting deluge of symptoms in New York,
there is a doctor back in Boston whose work will
lead to actually naming the unknown condition she's fighting in
the dark.
Speaker 4 (07:21):
I am John H. Stone. I am a professor of
medicine at Harvard Medical School and a rheumatologist at the
Massachusetts General Hospital.
Speaker 5 (07:31):
A quick aside for those not familiar. Rheumatology is the
medical specialty that focuses on the diagnosis and treatment of
rheumatic diseases, which are inflammatory and autoimmune conditions affecting the joints, muscles, bones,
and connective tissues.
Speaker 4 (07:48):
What your you to of rheumatology the multiorgan nature of diseases.
Have always aspired to be a good internist who takes
care of the entire body, including the mind, and the
challenges of treating the rheumatic diseases really drew me to
(08:08):
the field.
Speaker 5 (08:10):
Meanwhile, in New York, Nika is unwilling to let sickness
dictate her life. This fighting spirit fortuitously guides her to
meet her husband Mark in one of the busiest and
most demanding journalistic hubs in the city, the newsroom of WABC.
For someone who hasn't had the pleasure of meeting your
(08:30):
lovely wife, how would you describe Nika?
Speaker 3 (08:35):
Tough, soft, kind, caring, She's fun she's funny. She a
really good comedian when she doesn't try and be I
think those are the ass I would use.
Speaker 6 (08:50):
What do you love most about her personality? She doesn't
give a flying How do I say that? She generally
doesn't care what people think about the decision she's made.
If it is what is right or what is in
her heart, She's going to hop over every obstacle and
(09:10):
head in the direction where she needs to go.
Speaker 5 (09:14):
Did you have any idea when you first met that
she was navigating all these health issues?
Speaker 3 (09:21):
No, I just thought she's a pan of the ass
sometimes on a hard heartagg to crack. But no, I
knew that there was one time in the infancy of
our getting to know each other. I saw her taking
pills at work and I was like, that's different.
Speaker 5 (09:38):
What's going on. Why do you need to take pills?
Speaker 3 (09:41):
And she was explaining that she was having some liver
issues at the time. But then I had finished the
conversation with I'm keeping all my organs, which made her laugh.
Speaker 5 (09:53):
When things started to get a little more serious and
you realized that you had deeper feelings forming for Nika.
What was it like for you to see her feeling
so sick.
Speaker 3 (10:04):
I remember some of the earlier times when she was
not well. That's where my frustration or the pain watching
another human being you care about go through it brings
you some pain. And she was basically like, you have
to knock that off. I just need you to be strong.
Speaker 5 (10:25):
With Mark's unwavering support, Nika continues to fight this unidentified enemy,
but the unrelenting struggle manifests in more than just physical consequences.
The financial burden of dealing with her chronic illness is crushing.
Speaker 1 (10:40):
It is devastating.
Speaker 2 (10:41):
They tell you they don't discuss religion, don't discuss politics,
and don't discuss money. Even when you're struggling, you don't
even tell the people who are supposed to be closest
to you, including my parents.
Speaker 1 (10:51):
How much it's costing me to be me?
Speaker 2 (10:53):
I know that I've spent over a quarter of a
million dollars out of pocket of my own money to
keep myself alive and to keep myself releiantly functioning.
Speaker 5 (11:00):
Did you ever get gas lit that it's in your
head that maybe you didn't have all the symptoms you
thought you had.
Speaker 1 (11:09):
No, I did not.
Speaker 2 (11:10):
They may have not thought it was as severe as possible.
So I remember going to one doctor and saying, this
is what's happening. He goes, but you're going to work
every day. Yeah, and you're still having a relationship. Yes, Oh,
then it's not that bad. Then come back when it
gets worse.
Speaker 5 (11:24):
Over ten years into her struggle, Nika is still fighting
through intense fatigue, headaches, joint pains, dry mouth and eyes,
hormonal imbalances, treating each symptom in isolation, a decade of
confusion and pain without a clear picture in sight. This
arduous trek is one that doctor Stone unfortunately knows all
(11:47):
too well.
Speaker 4 (11:50):
There are many diseases in which there is not a
single diagnostic test, but it does require the clinician being
familiar with the underlying condition and having access to the
workup that's been done already.
Speaker 5 (12:05):
How as a physician do you help patients navigate the unknown?
In terms of the psychological component, you.
Speaker 4 (12:14):
Can only imagine the psychological trauma that patients endure when
they go for years and go from doctor to doctor
and test to test and biopsy to biopsy and are
not given the correct diagnosis. And it's critical to remember
that patients are very fragile emotionally. The clinician really has
(12:36):
to keep that in mind moving forward. It takes a
long time to restore faith and confidence in the medical profession.
If it's taken years of misdiagnosis to get to the
right place.
Speaker 5 (12:49):
You're vast approaching fifteen years at this point without a diagnosis,
and you've been so sick and in terrible pain for
a lot of that time. You keep pushing in your
career in life. Did you ever feel like giving up?
Speaker 2 (13:07):
It was just one of those things where you just
learned to keep it moving. I wasn't raised by complainers.
No matter how sick anybody was or what was going on.
There was no excuses, you know, there's no excuse to
not excel even if I didn't feel well, if I
had to write it from my bed, that I was
going to finish what I started. And so it's very
difficult to be that and be a good patient. And
(13:29):
the fundamental of how to be a good patient is
not something that's taught to us, and it's something we're
all going to need. Nobody ever told me that it
was okay to say, you know what, this is not right,
and so you endure far more than you need to endure.
Speaker 3 (13:43):
She is driving down road it has hazards, but she
doesn't know the name of the road, and as medical
issues start piling on to each other, she is determined
to know what are these obstacles, what road I am on?
To make sure you make the right term. When the
turn is there.
Speaker 5 (14:08):
That road is about to become even more hazardous for Nika,
with a new deadly obstacle materializing out of nowhere.
Speaker 1 (14:17):
I was coming back from Baltimore.
Speaker 2 (14:19):
I was driving on the New Jersey Turnpike and I
wasn't feeling well again.
Speaker 1 (14:23):
I was having a terrible headache.
Speaker 2 (14:25):
It was like somebody stabbing in the side of the
head with an ice pick, but on panic, and I
closed my eyes for a split second, I was in
the second lane, opened my eyes again and everything was blurry.
Speaker 1 (14:37):
I couldn't see.
Speaker 5 (14:42):
We'll be right back with Symptomatic, a medical mystery podcast.
Now back to Symptomatic, a medical mystery podcast. Over fifteen
years out from the starter for Symptoms, Nika has been
living with a mysterious illness now for over a third
of her life. She's been taking medication for insulin resistance,
(15:05):
excess stomach acid, anti nausea pills, anti inflammatories, and a
slew of painkillers. She's had biopsies, blood tests, MRIs, ultrasounds,
transophageal echocardiograms, spinal taps, and more, with no clear answer
as to the root cause of her sickness. It's now
(15:26):
two thousand and nine and Nica's driving home to New
York from a book tour in Baltimore when all of
the sudden, she is hit with unthinkable pain.
Speaker 2 (15:39):
I was driving on the New Jersey Turnpike. It was
like somebody's stabbing in the side of the head with
an ice pick, and everything sort of went blurry. I'm
only like an exit or two away from home, but
i can't see and I'm in terrible pain.
Speaker 1 (15:57):
Oh my god.
Speaker 2 (15:58):
I know that I'm in trouble here, and I'm starting
to sort of, you know, have those internal conversations with yourself.
Speaker 1 (16:04):
And I panic.
Speaker 5 (16:06):
Were you terrified?
Speaker 2 (16:08):
Yes, except for I also thought I gotta get somewhere safe,
so I just gotta keep going. And I don't know
how to explain it, but somehow I saw the guy's
break lights in front of me, and something in my
head said, follow those red lights, and so I followed
him off of the exit, and it happened to be
the exit that I needed to Newark. But as soon
as I got to the ramp, I was like, Okay,
now I'm on the shoulder and I'm just gonna stop here.
(16:32):
I stopped, and thankfully my phone was in the cup holder,
and I called my then boyfriend and said, something is wrong.
Speaker 1 (16:38):
You've got to come get amy.
Speaker 5 (16:41):
What was going through your head? And then minute between
making that call and having your then boyfriend actually show
up at the car.
Speaker 2 (16:50):
That's sort of when the panic sets in because you're
not sure what's happening.
Speaker 1 (16:55):
I was like, am I going blind? There? Like some
kind of tumor?
Speaker 5 (16:58):
So then I'm sure you go right to the emergency room.
Speaker 4 (17:01):
Right.
Speaker 2 (17:01):
We go to the emergency room. They're like, your blood
pressure is elevated. So they do the spinal TEP. They
really don't see anything. We go to my primary care physician,
he has been with me many years, and he says,
I think you're having a stroke. I was like, what
the hell is he talking about a stroke? So I
do the tests, I do the stress tests and all
that stuff, and he says, I mean, your blood pressure
(17:22):
is relatively normal. You probably just need to work out
more and take this water pill and you'll be good.
Speaker 5 (17:29):
Even after what felt like a near death experience, Nika
is no closer to understanding the true cause. Doctors have
now added blood pressure medication, baby aspirin, and a diuretic
to address what could have been a series of strokes,
another inconclusive set of symptoms, another handful of pills.
Speaker 4 (17:51):
The biggest challenge, though, I think is underscored by Nika's case,
and that is getting to the right diagnosis in the
first place. The disease is like a crow flying through
the dark night. Patients go months or years. Patients can
be incurring damage in all of these organs at the
same time. The issue is not so much difficulty treating
(18:15):
the disease now as difficulty getting to the right diagnosis.
Speaker 5 (18:21):
As things get worse, symptoms compound, and Nika's ever growing
list of medication confuses medical professionals who are unaware of
her history. Mark tries his best to advocate for her
in situations that require background knowledge of her ongoing health issues.
Speaker 3 (18:40):
Getting her to want to go to the er is
not an easy task. She's not feeling well, she's in pain.
So we take her to the hospital that's nearby. We
get admitted right away and we're going over her medications.
Almost every medication she takes a for an AWFU label use.
(19:00):
So we're trying to explain to this nurse that she
is not a diabetic.
Speaker 1 (19:05):
Don't treat her like a diabetic.
Speaker 5 (19:08):
But no, she's on met formant.
Speaker 3 (19:09):
She has to be a diabetic, and I'm like, she's not.
All these drugs are taken for all label use, and
you start running down all her meds and they keep
thinking it's for what it's normally prescribed for, and we're
like no, And she gets taken away for testing and
the police officer assigned to the er comes over and says,
(19:31):
you have to leave. Leave pardon why do I have
to leave. My wife is in the back. I'm her
medical proxy. If any decisions made off any blood's drawn,
if a band AI's put on her and I haven't
signed off on it, this is going to be an issue.
I don't know if he believes me at this point,
but we go into the waiting room. Ten minutes later,
(19:52):
Nikka comes out of the er door with her pants on,
with her gown on but falling off, and the offers like,
where are you going? You can't leave? She's like, oh, yes,
I can. I'm allowed to sign myself out at anytime.
Why is he sitting here? Why is he not in
the er? And I look and I go told you.
(20:13):
The officer's like, uh oh, I messed up. Now that's
an extreme example of advocating, but sometimes that's what you
have to do. If I'm not there and she can't talk,
they're going to treat her like she's a diabetic, or
she's going to treat her like this or that, and
they're not going to treat it properly.
Speaker 5 (20:35):
Nika is determined to just keep moving, though she's no
closer to answers. She doesn't want to be held back.
But this thing continues to rip through her gaining momentum
and showing up in new and terrifying form.
Speaker 2 (20:52):
Twenty fourteen, everything changes. I wake up one day and
I have people say, like a goiter looking neck, it's
like swollen.
Speaker 1 (21:00):
It looks like a bullfrog. And I don't know why.
Speaker 2 (21:04):
And so I go to the doctor and she says,
you have swollen lyft notes you have ad anopathy, and she.
Speaker 1 (21:09):
Goes, ah, it's not a big deal. You must have some.
Speaker 2 (21:11):
Sort of infection. It'll clear up. And I don't think
anything of it. And it goes on three months. It
just stays like that, and then it starts to hurt physically.
To touch my own face, to wash it in the morning,
it physically hurt.
Speaker 5 (21:26):
This is the first time that you have something that
is a physical manifestation of what you're fighting.
Speaker 2 (21:34):
Yeah, something that's really impeding me in a way that
I realize that I have to do something.
Speaker 1 (21:39):
And I go and I go to a different doctor.
Speaker 2 (21:41):
My doctor is not there that day, and I find
the person who is on call that day and she
looks at it and she goes, that's not good. Can
you go see a friend of mine? And I said, okay,
he'll see you right now, and I go to his
office and he says, so, when would you like to
have surgery? And I was like, I'm a little confused.
Did she not tell you why you were here? She
(22:01):
didn't tell you she suspected lymphomo and that was what
I realized. I was like, whatever this is, it's killing
me and I need to know what it is. I
wasn't ready to die.
Speaker 5 (22:17):
How did they explain what was happening to your lymph notes?
Speaker 2 (22:21):
We don't know what they're reacting to, but they're reacting.
So I have surgery. They take them out, and I
think I'm all clear, And a year later he goes,
I need to do this again.
Speaker 1 (22:31):
Because now there are more of them.
Speaker 2 (22:34):
He did three surgeries for that, and then one corrective
surgery to fix the scar. Now I can go see
an oncologist or somebody who could tell me what to.
Speaker 1 (22:42):
Do with this.
Speaker 2 (22:42):
And I said, there's really nothing to do. He removed
the whole thing. You're good, and I was like, I'm
not good. I need to find an answer then, because
nobody can still tell me why I had add anopathy
in the first place. Why am I constantly in a
state of fighting an infection? Except for I feel the
same way I always do. I did not want to
(23:03):
die and I didn't want to be cut up into
little pieces for the rest of my life. And everybody
just throw up their hands and go, I don't know.
That was no longer an acceptable answer to me.
Speaker 5 (23:16):
When Nika activates her dogged search mode, what happens. Does
she always get an answer to her question? No, is
that an answer. I'm just going to move around you.
Speaker 3 (23:27):
I'm going to go over you, I'm going to go
past you. I'm going to get my answer. She will
hurtle over that obstacle, she will go around that obstacle,
she will blow up that damn obstacle. She's going to
find an answer.
Speaker 5 (23:43):
Nica recognizes that the key to finding the root cause
of her sickness is to gather up the puzzle pieces
into one box. She contacts every hospital, every doctor, every
medical testing lab she has ever visited, and organizes all
for medical records.
Speaker 1 (24:01):
I first started with like our TV doctor.
Speaker 2 (24:03):
So I asked you, so, what kind of doctor would
deal with like a constant infection?
Speaker 1 (24:08):
Because that's what I was told.
Speaker 2 (24:09):
The ad anopathy came from, Oh, you need an immunologist
or a rheumatologist. I didn't know those ologists, and so
I found the Castleton Guide and it said ranks all
the doctors in hospital the best of the best every
year because they might be able to know the answers.
And so I wrote that down, and then I set
about making an appointment with every single one of them.
Speaker 5 (24:29):
You did something else, which was daunting, given the time
period you accumulated all of your medical records.
Speaker 2 (24:39):
At that time, they were just starting to do those things.
You know, now I can connect all different hospitals together.
We couldn't do that. So, like you said, I had
a spinal tap at Saint Luke Roosevelt, so I got
to go there. And I had this done at Saint Mary's.
So now I got to go there or call there.
I got to fill out the form. I gotta fax
it back. I got to wait for them to mail
me the slides and the CD disc with all your
images on. People don't realize like back then they used
(25:00):
to actually give you the actual X rays. It was
an actual sheet of an X ray with my brain
on it to show them when I had the tia.
And this is actually the disc when they did the
sky out of my belly. So I collected this whole thing,
and I ended up with this ginormous folder. For the
first time, it occurred to me, maybe this is all
sort of one thing.
Speaker 4 (25:19):
Armed with only two or three pieces of that information,
if it was felt to be reliable, could have made
all the difference in the world. So it's a terrible
irony in this world where information flows so freely, in
many cases, we still have a terrible time getting patients
(25:40):
medical records across town from one hospital to another, and
this leads to a real bottleneck, a real roadblock in
helping patients get to the right diagnosis.
Speaker 5 (25:54):
Nika's research brings her back to the list of the
ten best roomatologists in New York. The first three don't
work out, but Nika keeps at it, and she schedules
in to see doctor number four.
Speaker 2 (26:08):
She had looked at my file beforehand, and some of
the blood tests and the images that were done, and
so by the time I had an appointment there, she
had already had a good idea as to what she
thought was wrong with me, which was an earth shattering moment.
Speaker 5 (26:23):
Take me to that exact moment, because I cannot imagine
what that must have been like for you. Seventeen years.
Speaker 1 (26:34):
Yeah.
Speaker 2 (26:34):
It was odd because before she even examined me, she said, well,
I looked at your file, and I looked at it.
Speaker 1 (26:40):
I think I know what's going on.
Speaker 2 (26:41):
And I thought, hold on every place I've ever been,
I've given more blood than I probably have in my body. Now,
all of the tests and all of the doctors, and
not one person thought to run this one test. And
she took out a piece of paper, her little pad
with her name on the top, and she scrolled some weird,
random collection of letters, and I was like, what is that?
(27:03):
As she said, it's a rare condition, but I think
you have that. She wrote down that I have something
called IgG four rd.
Speaker 5 (27:14):
Do you remember that phone call when she told you
I have a name for it. I think I know
what I have.
Speaker 3 (27:20):
Yeah, I would equate it with me being a kid
at waiting for Christmas gifts. She was as joyous as
you can be knowing you have a medical condition. But
not knowing is oh man, not knowing is pain. To
not know, it's almost a crime against her, it's unfair.
But to know, to have beaten that, it's almost like
(27:42):
a victory. I know what this road is called. I
know what this journey is I know what is wrong
with me. It's like the mystery of a lifetime.
Speaker 2 (27:52):
It's joy to find out that you know a name,
but also sadness knowing that nobody else knows what the
heck this is.
Speaker 1 (27:58):
So now what do we do?
Speaker 2 (28:00):
Nobody else has heard of it, Nobody else knows what
that means for your life, for your expectancy, your quality
of life, any of those things.
Speaker 5 (28:07):
Now armed with a name for the condition she's been
fighting for almost two decades, Nika applies her journalistic skills
to track its foremost expert, a leader in the field
who was one of the first doctors to identify IgG
four related disease in the United States, Doctor John H. Stone.
Speaker 4 (28:27):
I should first say that IgG four is an antibody
that we all have. In IgG four related disease, levels
of this antibody often become very, very high. It is
a multi organ inflammatory disease. It's mediated by the immune system,
(28:47):
but we don't really know what kicks off the process
to begin with. It can involve any organ system in
the body. So, for example, if the pancreas is targeted
and the pancreas is a major organ then patients can
become diabetic. If the kidneys are involved, the kidneys can fail.
(29:09):
If the sinuses are involved, then sinus involvement can lead
to a great risk of infections, which ultimately can be lethal.
The word that comes to mind that we use in
medicine a lot to describe a disease that has many
faces is protean. It's one of the most protean diseases
(29:33):
that I know of.
Speaker 5 (29:35):
I imagine it is extremely difficult for pathologists and physicians to
distinguish it from similar manifesting diseases.
Speaker 4 (29:44):
That's right. IgG four related disease mimics many diseases and
is mimicked by many diseases. It is remarkable when one
talks to patients how commonly it comes up that they
were misdiagnosed as having cancer. They were told they had
metastatic or inoperable cancer of the pancreas, the lungs, the kidneys,
(30:08):
or that they had lymphoma, which is a cancer of
the lymph system.
Speaker 5 (30:13):
What is your role as a leader on the forefront
of IgG four RG medical treatment.
Speaker 4 (30:21):
Well, I have a history with this disease going back
eighteen years now, and it wasn't even called IgG four
related disease. Then it was a couple of years later
that the world decided IgG four related disease was the
most appropriate name. With colleagues at Mastheusetsal Hospital, I organized
(30:43):
the world's first symposium on the disease, held in Boston
in October of twenty eleven. My group observed very early
on that B cell depletion was a very effective therapy
for IgG four related disease. It took a long time
to convince pharmaceutical industry that we ought to be studying
(31:07):
B cell depletion in a formal way in a randomized,
double blind, placebo control trial, and the results of that
trial proved that B cell depletion was far superior to
conventional treatment with steroids for the management of patients with
with IgG four related disease.
Speaker 5 (31:28):
Did it surprise you that it took her seventeen years
to get a proper diagnosis and why or why not
it did?
Speaker 4 (31:37):
But I do think given that IgG four related disease
wasn't even recognized to be a unique diagnosis until two
thousand and three, and then it was really another four
or five years before people in the United States began
to become aware of the condition. I think that goes
a long way toward explaining why it took such a
(31:58):
long time, though I think they're probably other reasons too.
Speaker 5 (32:01):
Nika had been battling symptoms for six years before the
disease was even named, in almost a decade before it
was known in the US.
Speaker 4 (32:11):
It is an unconscionably long time to wait to come
to a diagnosis for a disease that is so treatable,
So it's very unfortunate.
Speaker 5 (32:21):
The diagnosis, to me, is also incredible because from what
they did know, you didn't exactly fit the stereotype of
who was being diagnosed with this and at that age, No.
Speaker 2 (32:35):
I was too young, I was too black, I was
a woman. At that time, they thought it was men
over white men over fifty Asian men, not certainly not
black women in their twenties. That was not something that
most people thought about at all, or women at all.
And to me, it was even more interesting that it
was discovered by guy in Boston when I was in
bosson the whole time.
Speaker 5 (32:56):
Because IgG four rd is still being understood, Nica's treatment
is constantly evolving, the treatment itself, fairies, depending upon her
given symptoms at the moment corticosteroid helps during flare ups,
and an anti rheumatic works to keep them at bay.
A proton pump inhibitor deals with her gastrointestinal issues, and
(33:16):
she takes medication to keep her blood pressure and cholesterol low.
Although Nika is now able to treat her symptoms with
accuracy and an understanding of the root cause, she still
has good days and bad days. Mark is there with
Nica through all of them. Their lasting partnership is a
walking example of in sickness and in health.
Speaker 2 (33:39):
I said to him that I just wanted to make
sure that he understood what he was signing up for.
I don't want to strap somebody with a burden that
they may not be consciously thinking about. I also wanted
him to stop and think about it because he had
a child, And I said, in what you choose for
yourself is one thing, but now this profoundly changes the
life of your child to be with somebody who's chronically you,
(34:00):
because now they have to deal with sometimes Nica can't
do this, and she can't do that. She's having a
bad day today. What I learned is the children are
highly adaptable. His son just got used to it. You
go get the pills. We made up games to play
in the bed when I had days when I couldn't
get out of the bed.
Speaker 5 (34:15):
It's an obstacle.
Speaker 1 (34:17):
It's gonna suck.
Speaker 3 (34:18):
We're gonna get through this, but we're gonna have laughs
about it. We're gonna joke about it. Occasionally, we're gonna
cry about it. I have to hide my tears. She's
got a great smile, especially when you get it out
of her, especially when she's in pain. I almost made
it a mission to get her to laugh, to get
(34:38):
a smile out of her, to dance a little in
the rain.
Speaker 1 (34:42):
Rain has been in her forecast a little too much,
so to be ordered to.
Speaker 3 (34:47):
Dance in the rain with her is one of my
It's one of my guilty pleasures, just to get her
to laugh when she's down, get it to have some
fun and circumstance where most people are.
Speaker 1 (34:59):
Like, how could you even matters?
Speaker 4 (35:00):
To have fun.
Speaker 5 (35:02):
It's one of the reasons.
Speaker 4 (35:03):
Why I love her.
Speaker 2 (35:05):
When we finally got married, they wrote about our wedding
and the wedding section of the New York Times, and
it said in sickness and health and then a wedding.
And I always thought of him that way that he
always understood what those valves were long before we took them,
because he never flinched about the in sickness part.
Speaker 5 (35:20):
Oh boy, yeah, the sickness part.
Speaker 1 (35:24):
I think a lot of people take that for granted.
It's a reality.
Speaker 3 (35:27):
You can't make it to the altar and not mean that,
because you know that's part of the roads you're.
Speaker 5 (35:33):
On, Doctor Stone, What most inspires you or what can
you leave us with about working with IgG four related
disease patients?
Speaker 4 (35:49):
I couldn't be more optimistic about the future for people
living with IgG four related disease now. I think there's
every reason to believe medical brisk breakthroughs in IgG four
or late disease are going to continue at a growing
pace in the very near future. We can understand the
path of physiology, we can do clinical trials, we can
(36:12):
get medications approved, but none of that is more important
than educating people about the condition that they have, helping
them understand it, and helping them learn to live with it.
Speaker 5 (36:24):
Well, you are so resilient and you have just very quiet,
strong confidence about the way in which you have navigated
your health challenges. Nico, what do you want people to
take away from your story.
Speaker 2 (36:45):
I think what I did learn was from my mother.
I remember once being like, I'm really sad that this
is happening, and she said, because you're looking at the
big picture, why don't you look at the small picture?
And I said, what's the small picture?
Speaker 1 (37:00):
It's live long enough.
Speaker 2 (37:01):
Just live long enough for today, Live long enough to
feel better to get up in the morning, Live long
enough for them to come up with a new medication.
Live long enough to finish that task that you have,
maybe not today, but possibly tomorrow. You just have to
live long enough to get over the next hurdle.
Speaker 1 (37:16):
That's all you have to do.
Speaker 2 (37:18):
And when you take it and bite size morsels, it's
really possible to see that you can get it all done.
I can't walk fifteen miles every day, but when we
went to Lake George, I was able to walk as
many steps as I needed to have a good day
with my husband. So I live long enough to just
enjoy today. I'll worry about tomorrow or tomorrow.
Speaker 5 (37:43):
For more on IgG four related diseases, visit IgG four
word dot org. That's IgG number four word dot org.
You can read more about Nika's story in her book
misdiagnosed the search for doctor house and follow along on
her website Nicabeeman dot com.
Speaker 2 (38:03):
I'm Nica Beeman van Scheck and I was diagnosed with
IgG four RD after seventeen year search.
Speaker 5 (38:13):
On next week's episode of Symptomatic. From the moment Halee
Sanchez started her period, she could tell that something was
very different. Suffering debilitating minstrel cramps and intense bleeding, Haley
spent half of every month fighting just to stand up.
When she joined the Air Force as a medic, Haley
did not predict how agonizing her symptoms would become.
Speaker 1 (38:36):
I wasn't willing to risk being held back in boot camp,
so I just kept pushing through. The pain got so
bad within an instant, it just kind of went black.
Speaker 5 (38:47):
Consistently dismissed by military doctors, Haley suffered in silence for
years before finally getting the test that would reveal a
condition so rare that they had never seen it before.
As always, we would love to hear from you. Send
us your thoughts on this episode or share a medical
mystery of your own at Symptomatic at iHeartMedia dot com,
(39:10):
and please rate and review Symptomatic wherever you get your podcasts.
We'll see you next time. Until then, be Well. Symptomatic,
a medical mystery podcast, is a production of iHeartMedia's Ruby Studio.
Our show is hosted by me Lauren Brightbacheco. Our executive
producers are James Foster, Matt Ramano, and myself. Our supervising
(39:34):
producers are Ryan Ovadia, Haley Aliah Ericson, and Daniel Ainsworth.
This episode was written by Haley Aliah Ericson and edited
by Daniel Ainsworth.
Ruby.
Speaker 2 (00:09):
I was driving on the New Jersey Turnpike and everything
sort of went blurry. It was like somebody's stabbing on
the side of the head with an ice pick.
Speaker 3 (00:16):
She literally lost the ability to see doing sixty five
miles an hour. It's God holding the wheel at that point.
Speaker 4 (00:26):
The disease is like a crow flying through the dark night.
Patients go months or years incurring damage. In all of these.
Speaker 2 (00:35):
Organs, I can't see, and I'm in terrible pain. I
gotta get some more safe, so I just gotta keep going.
Speaker 5 (00:43):
How terrifying would it be to fight an unknown enemy,
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease that even
doctors couldn't identify. Nearly half of Americans from some chronic illness,
and many struggle for an accurate diagnosis. These are their stories.
(01:09):
I'm Lauren brad Pacheco, and this is symptomatic. Nika Beeman
van Shehek is a force to be reckoned with. In
all areas of her life, she has pushed herself to achieve.
She's an Emmy winning TV writer, author of four books,
and garnered a Peabody Award in her twenties for her
(01:30):
coverage of nine to eleven. Even as a young person,
Nika was tenacious and full of personality.
Speaker 1 (01:37):
I'm the oldest. I have two brothers.
Speaker 2 (01:39):
I have one that's exactly four years apart, and then
we have what we call the oops baby, who was fifteen.
Speaker 1 (01:44):
Years younger than me.
Speaker 2 (01:45):
So I was picking colleges and he was carrying around
stuffed animals.
Speaker 5 (01:49):
It's funny because I was going to ask if they
influenced your love of sports, But I bet you influenced
their love of sports.
Speaker 2 (01:55):
They have no love of sports. I'm the only one.
I always say that my father had me. I was
supposed to be his son. I was the one who
learned to fix things with him. I was the one
who was more adventurous and who left home and was
willing to go by themselves.
Speaker 1 (02:09):
I'm more of his temper.
Speaker 2 (02:10):
Unfortunately, so I was more of my father's son than
his own son's.
Speaker 5 (02:14):
And not just any organized sports. You choose ice hockey
and baseball once you get to boarding school.
Speaker 2 (02:21):
Yeah, I said to my father, there's really nothing to play.
And my father said, you played Little League when you
were a kid. I said, yeah, but they don't have
a female team. They don't have female softball. And he said,
you know what Title nine says, if they don't have
an equal or greater sport, then they have to let
you try out. So you go down there and you
tell that coach that he has to let you try out.
And so I went down there and said, my father says,
I have to at least be given a shot, and
they said, all right, then we'll give you a shot.
Speaker 1 (02:43):
And I made the team. And then by the next
year we had another girl.
Speaker 2 (02:48):
So you know, I kind of ruined the whole team,
or maybe improved it that much more.
Speaker 5 (02:55):
I know that, having read your book, you were very
close to both of your parents, who have both unfortunately passed,
but you and your father seemed to have a particular bond.
How did his raising you impact your personality?
Speaker 2 (03:14):
The greatest thing I think I got from him was
that I understood that no matter what your circumstances are,
and for him it was growing up poor and a
segregated South with one parent, that you can find a way.
He knew he wanted to do other things, so he
got on a bus and came to New York. So
at some point was homeless on the subway. He ended
up joining the police Academy, then going to the Air Force.
(03:36):
Then he got sick in the Air Force and ended
up having to come out.
Speaker 1 (03:40):
But he had done so many things. Then he decided
he was going to go to college.
Speaker 2 (03:42):
He was going to get a degree, and so he
got a job at NYU. He actually, when he was
at NYU, participated in the Freedom Writers to register people
to vote during the segregated South, and they made a magazine,
and the magazine ultimately got inducted into the Library of Congress.
And so I grew always seeing people writing and doing
those kind of things.
Speaker 5 (04:03):
At a young age, Nica was praised for her abilities
in writing. Her curiosity and investigative nature led her to
join the school paper and go on to study journalism
at Boston College. There, Nica was a standout student and
an active member of club sports teams. She was headed
towards the future at full speed, seemingly unstoppable. Around this time,
(04:31):
as you're getting ready to graduate from college, you start
noticing that something is a miss in terms of your health.
Speaker 2 (04:38):
In nineteen ninety three, I started having all kinds of
what I consider unusual symptoms. By the time I got
to senior year. I was like, I'm just always tired.
There's joint pains that I didn't expect to have. I
had dry mouth and dry eyes. My eyes would burn
to a part where my vision would actually get blurry,
which was strange because I had twenty twenty vision. And
then I started having these debilitating headaches that I thought
(05:00):
were migraines, and I'm like, what in the world is
happening to me?
Speaker 5 (05:04):
So You're frequently visiting the infirmary and getting no answers.
Speaker 2 (05:09):
No, I'm getting a lot of tests for a lot
of things, but all of them are coming out negative.
I didn't have mono, I didn't have meningitis, I don't
have hepatitis.
Speaker 1 (05:17):
So I started to collect things I.
Speaker 2 (05:19):
Knew I didn't have, but that wasn't getting me any
closer to what I did have.
Speaker 5 (05:23):
This was just the tip of the iceberg, as varying
symptoms began to disrupt her life, seemingly disconnected ailments that
would place her on the long, frustrating, twisting path of misdiagnosis.
Speaker 2 (05:38):
It wasn't until like a couple of years after them,
when I kept getting sick, that at some point other
people started to notice like this is happening too frequently.
As the years drag on, you realize that this is
not going away, like this keeps coming every time somebody
gets sick, I'm getting sick. And as you start to
really see the pattern.
Speaker 5 (05:57):
So at this point a few years in to this,
not feeling well is becoming a new normal for you.
But you move to New York City and are living
your life when out of nowhere, you end up in
the emergency room because of a massive bleed. What happened.
Speaker 2 (06:14):
I was very sick and I was having a hemorrhage
and they said to me, we think you have PCOS.
You might have ruptured assist and that's what the problem is.
And I said, oh, okay, so I have PCOS.
Speaker 1 (06:29):
I just need some medications. So they give me medication for.
Speaker 2 (06:31):
That, and I go, great, then I should be good,
except for our wasn't because what I learned at some
point was that we were treating a set of symptoms,
but not all the symptoms. So I'm going to a
doctor for headaches that he goes, oh, no problem, we
can just make your brain not know that it has pained,
so we'll give you this drug.
Speaker 1 (06:52):
And I'm like, Okay, no problem.
Speaker 2 (06:54):
That's great, And I go I'm tired, and somebody goes,
you know what's great for a fatigue? You can just
take some riddlin. You'll feel much better. You'll have the
energy you need. I'm just going to each individual doctor
and getting them to treat whatever symptom they treat.
Speaker 5 (07:08):
While Nika battles a mounting deluge of symptoms in New York,
there is a doctor back in Boston whose work will
lead to actually naming the unknown condition she's fighting in
the dark.
Speaker 4 (07:21):
I am John H. Stone. I am a professor of
medicine at Harvard Medical School and a rheumatologist at the
Massachusetts General Hospital.
Speaker 5 (07:31):
A quick aside for those not familiar. Rheumatology is the
medical specialty that focuses on the diagnosis and treatment of
rheumatic diseases, which are inflammatory and autoimmune conditions affecting the joints, muscles, bones,
and connective tissues.
Speaker 4 (07:48):
What your you to of rheumatology the multiorgan nature of diseases.
Have always aspired to be a good internist who takes
care of the entire body, including the mind, and the
challenges of treating the rheumatic diseases really drew me to
(08:08):
the field.
Speaker 5 (08:10):
Meanwhile, in New York, Nika is unwilling to let sickness
dictate her life. This fighting spirit fortuitously guides her to
meet her husband Mark in one of the busiest and
most demanding journalistic hubs in the city, the newsroom of WABC.
For someone who hasn't had the pleasure of meeting your
(08:30):
lovely wife, how would you describe Nika?
Speaker 3 (08:35):
Tough, soft, kind, caring, She's fun she's funny. She a
really good comedian when she doesn't try and be I
think those are the ass I would use.
Speaker 6 (08:50):
What do you love most about her personality? She doesn't
give a flying How do I say that? She generally
doesn't care what people think about the decision she's made.
If it is what is right or what is in
her heart, She's going to hop over every obstacle and
(09:10):
head in the direction where she needs to go.
Speaker 5 (09:14):
Did you have any idea when you first met that
she was navigating all these health issues?
Speaker 3 (09:21):
No, I just thought she's a pan of the ass
sometimes on a hard heartagg to crack. But no, I
knew that there was one time in the infancy of
our getting to know each other. I saw her taking
pills at work and I was like, that's different.
Speaker 5 (09:38):
What's going on. Why do you need to take pills?
Speaker 3 (09:41):
And she was explaining that she was having some liver
issues at the time. But then I had finished the
conversation with I'm keeping all my organs, which made her laugh.
Speaker 5 (09:53):
When things started to get a little more serious and
you realized that you had deeper feelings forming for Nika.
What was it like for you to see her feeling
so sick.
Speaker 3 (10:04):
I remember some of the earlier times when she was
not well. That's where my frustration or the pain watching
another human being you care about go through it brings
you some pain. And she was basically like, you have
to knock that off. I just need you to be strong.
Speaker 5 (10:25):
With Mark's unwavering support, Nika continues to fight this unidentified enemy,
but the unrelenting struggle manifests in more than just physical consequences.
The financial burden of dealing with her chronic illness is crushing.
Speaker 1 (10:40):
It is devastating.
Speaker 2 (10:41):
They tell you they don't discuss religion, don't discuss politics,
and don't discuss money. Even when you're struggling, you don't
even tell the people who are supposed to be closest
to you, including my parents.
Speaker 1 (10:51):
How much it's costing me to be me?
Speaker 2 (10:53):
I know that I've spent over a quarter of a
million dollars out of pocket of my own money to
keep myself alive and to keep myself releiantly functioning.
Speaker 5 (11:00):
Did you ever get gas lit that it's in your
head that maybe you didn't have all the symptoms you
thought you had.
Speaker 1 (11:09):
No, I did not.
Speaker 2 (11:10):
They may have not thought it was as severe as possible.
So I remember going to one doctor and saying, this
is what's happening. He goes, but you're going to work
every day. Yeah, and you're still having a relationship. Yes, Oh,
then it's not that bad. Then come back when it
gets worse.
Speaker 5 (11:24):
Over ten years into her struggle, Nika is still fighting
through intense fatigue, headaches, joint pains, dry mouth and eyes,
hormonal imbalances, treating each symptom in isolation, a decade of
confusion and pain without a clear picture in sight. This
arduous trek is one that doctor Stone unfortunately knows all
(11:47):
too well.
Speaker 4 (11:50):
There are many diseases in which there is not a
single diagnostic test, but it does require the clinician being
familiar with the underlying condition and having access to the
workup that's been done already.
Speaker 5 (12:05):
How as a physician do you help patients navigate the unknown?
In terms of the psychological component, you.
Speaker 4 (12:14):
Can only imagine the psychological trauma that patients endure when
they go for years and go from doctor to doctor
and test to test and biopsy to biopsy and are
not given the correct diagnosis. And it's critical to remember
that patients are very fragile emotionally. The clinician really has
(12:36):
to keep that in mind moving forward. It takes a
long time to restore faith and confidence in the medical profession.
If it's taken years of misdiagnosis to get to the
right place.
Speaker 5 (12:49):
You're vast approaching fifteen years at this point without a diagnosis,
and you've been so sick and in terrible pain for
a lot of that time. You keep pushing in your
career in life. Did you ever feel like giving up?
Speaker 2 (13:07):
It was just one of those things where you just
learned to keep it moving. I wasn't raised by complainers.
No matter how sick anybody was or what was going on.
There was no excuses, you know, there's no excuse to
not excel even if I didn't feel well, if I
had to write it from my bed, that I was
going to finish what I started. And so it's very
difficult to be that and be a good patient. And
(13:29):
the fundamental of how to be a good patient is
not something that's taught to us, and it's something we're
all going to need. Nobody ever told me that it
was okay to say, you know what, this is not right,
and so you endure far more than you need to endure.
Speaker 3 (13:43):
She is driving down road it has hazards, but she
doesn't know the name of the road, and as medical
issues start piling on to each other, she is determined
to know what are these obstacles, what road I am on?
To make sure you make the right term. When the
turn is there.
Speaker 5 (14:08):
That road is about to become even more hazardous for Nika,
with a new deadly obstacle materializing out of nowhere.
Speaker 1 (14:17):
I was coming back from Baltimore.
Speaker 2 (14:19):
I was driving on the New Jersey Turnpike and I
wasn't feeling well again.
Speaker 1 (14:23):
I was having a terrible headache.
Speaker 2 (14:25):
It was like somebody stabbing in the side of the
head with an ice pick, but on panic, and I
closed my eyes for a split second, I was in
the second lane, opened my eyes again and everything was blurry.
Speaker 1 (14:37):
I couldn't see.
Speaker 5 (14:42):
We'll be right back with Symptomatic, a medical mystery podcast.
Now back to Symptomatic, a medical mystery podcast. Over fifteen
years out from the starter for Symptoms, Nika has been
living with a mysterious illness now for over a third
of her life. She's been taking medication for insulin resistance,
(15:05):
excess stomach acid, anti nausea pills, anti inflammatories, and a
slew of painkillers. She's had biopsies, blood tests, MRIs, ultrasounds,
transophageal echocardiograms, spinal taps, and more, with no clear answer
as to the root cause of her sickness. It's now
(15:26):
two thousand and nine and Nica's driving home to New
York from a book tour in Baltimore when all of
the sudden, she is hit with unthinkable pain.
Speaker 2 (15:39):
I was driving on the New Jersey Turnpike. It was
like somebody's stabbing in the side of the head with
an ice pick, and everything sort of went blurry. I'm
only like an exit or two away from home, but
i can't see and I'm in terrible pain.
Speaker 1 (15:57):
Oh my god.
Speaker 2 (15:58):
I know that I'm in trouble here, and I'm starting
to sort of, you know, have those internal conversations with yourself.
Speaker 1 (16:04):
And I panic.
Speaker 5 (16:06):
Were you terrified?
Speaker 2 (16:08):
Yes, except for I also thought I gotta get somewhere safe,
so I just gotta keep going. And I don't know
how to explain it, but somehow I saw the guy's
break lights in front of me, and something in my
head said, follow those red lights, and so I followed
him off of the exit, and it happened to be
the exit that I needed to Newark. But as soon
as I got to the ramp, I was like, Okay,
now I'm on the shoulder and I'm just gonna stop here.
(16:32):
I stopped, and thankfully my phone was in the cup holder,
and I called my then boyfriend and said, something is wrong.
Speaker 1 (16:38):
You've got to come get amy.
Speaker 5 (16:41):
What was going through your head? And then minute between
making that call and having your then boyfriend actually show
up at the car.
Speaker 2 (16:50):
That's sort of when the panic sets in because you're
not sure what's happening.
Speaker 1 (16:55):
I was like, am I going blind? There? Like some
kind of tumor?
Speaker 5 (16:58):
So then I'm sure you go right to the emergency room.
Speaker 4 (17:01):
Right.
Speaker 2 (17:01):
We go to the emergency room. They're like, your blood
pressure is elevated. So they do the spinal TEP. They
really don't see anything. We go to my primary care physician,
he has been with me many years, and he says,
I think you're having a stroke. I was like, what
the hell is he talking about a stroke? So I
do the tests, I do the stress tests and all
that stuff, and he says, I mean, your blood pressure
(17:22):
is relatively normal. You probably just need to work out
more and take this water pill and you'll be good.
Speaker 5 (17:29):
Even after what felt like a near death experience, Nika
is no closer to understanding the true cause. Doctors have
now added blood pressure medication, baby aspirin, and a diuretic
to address what could have been a series of strokes,
another inconclusive set of symptoms, another handful of pills.
Speaker 4 (17:51):
The biggest challenge, though, I think is underscored by Nika's case,
and that is getting to the right diagnosis in the
first place. The disease is like a crow flying through
the dark night. Patients go months or years. Patients can
be incurring damage in all of these organs at the
same time. The issue is not so much difficulty treating
(18:15):
the disease now as difficulty getting to the right diagnosis.
Speaker 5 (18:21):
As things get worse, symptoms compound, and Nika's ever growing
list of medication confuses medical professionals who are unaware of
her history. Mark tries his best to advocate for her
in situations that require background knowledge of her ongoing health issues.
Speaker 3 (18:40):
Getting her to want to go to the er is
not an easy task. She's not feeling well, she's in pain.
So we take her to the hospital that's nearby. We
get admitted right away and we're going over her medications.
Almost every medication she takes a for an AWFU label use.
(19:00):
So we're trying to explain to this nurse that she
is not a diabetic.
Speaker 1 (19:05):
Don't treat her like a diabetic.
Speaker 5 (19:08):
But no, she's on met formant.
Speaker 3 (19:09):
She has to be a diabetic, and I'm like, she's not.
All these drugs are taken for all label use, and
you start running down all her meds and they keep
thinking it's for what it's normally prescribed for, and we're
like no, And she gets taken away for testing and
the police officer assigned to the er comes over and says,
(19:31):
you have to leave. Leave pardon why do I have
to leave. My wife is in the back. I'm her
medical proxy. If any decisions made off any blood's drawn,
if a band AI's put on her and I haven't
signed off on it, this is going to be an issue.
I don't know if he believes me at this point,
but we go into the waiting room. Ten minutes later,
(19:52):
Nikka comes out of the er door with her pants on,
with her gown on but falling off, and the offers like,
where are you going? You can't leave? She's like, oh, yes,
I can. I'm allowed to sign myself out at anytime.
Why is he sitting here? Why is he not in
the er? And I look and I go told you.
(20:13):
The officer's like, uh oh, I messed up. Now that's
an extreme example of advocating, but sometimes that's what you
have to do. If I'm not there and she can't talk,
they're going to treat her like she's a diabetic, or
she's going to treat her like this or that, and
they're not going to treat it properly.
Speaker 5 (20:35):
Nika is determined to just keep moving, though she's no
closer to answers. She doesn't want to be held back.
But this thing continues to rip through her gaining momentum
and showing up in new and terrifying form.
Speaker 2 (20:52):
Twenty fourteen, everything changes. I wake up one day and
I have people say, like a goiter looking neck, it's
like swollen.
Speaker 1 (21:00):
It looks like a bullfrog. And I don't know why.
Speaker 2 (21:04):
And so I go to the doctor and she says,
you have swollen lyft notes you have ad anopathy, and she.
Speaker 1 (21:09):
Goes, ah, it's not a big deal. You must have some.
Speaker 2 (21:11):
Sort of infection. It'll clear up. And I don't think
anything of it. And it goes on three months. It
just stays like that, and then it starts to hurt physically.
To touch my own face, to wash it in the morning,
it physically hurt.
Speaker 5 (21:26):
This is the first time that you have something that
is a physical manifestation of what you're fighting.
Speaker 2 (21:34):
Yeah, something that's really impeding me in a way that
I realize that I have to do something.
Speaker 1 (21:39):
And I go and I go to a different doctor.
Speaker 2 (21:41):
My doctor is not there that day, and I find
the person who is on call that day and she
looks at it and she goes, that's not good. Can
you go see a friend of mine? And I said, okay,
he'll see you right now, and I go to his
office and he says, so, when would you like to
have surgery? And I was like, I'm a little confused.
Did she not tell you why you were here? She
(22:01):
didn't tell you she suspected lymphomo and that was what
I realized. I was like, whatever this is, it's killing
me and I need to know what it is. I
wasn't ready to die.
Speaker 5 (22:17):
How did they explain what was happening to your lymph notes?
Speaker 2 (22:21):
We don't know what they're reacting to, but they're reacting.
So I have surgery. They take them out, and I
think I'm all clear, And a year later he goes,
I need to do this again.
Speaker 1 (22:31):
Because now there are more of them.
Speaker 2 (22:34):
He did three surgeries for that, and then one corrective
surgery to fix the scar. Now I can go see
an oncologist or somebody who could tell me what to.
Speaker 1 (22:42):
Do with this.
Speaker 2 (22:42):
And I said, there's really nothing to do. He removed
the whole thing. You're good, and I was like, I'm
not good. I need to find an answer then, because
nobody can still tell me why I had add anopathy
in the first place. Why am I constantly in a
state of fighting an infection? Except for I feel the
same way I always do. I did not want to
(23:03):
die and I didn't want to be cut up into
little pieces for the rest of my life. And everybody
just throw up their hands and go, I don't know.
That was no longer an acceptable answer to me.
Speaker 5 (23:16):
When Nika activates her dogged search mode, what happens. Does
she always get an answer to her question? No, is
that an answer. I'm just going to move around you.
Speaker 3 (23:27):
I'm going to go over you, I'm going to go
past you. I'm going to get my answer. She will
hurtle over that obstacle, she will go around that obstacle,
she will blow up that damn obstacle. She's going to
find an answer.
Speaker 5 (23:43):
Nica recognizes that the key to finding the root cause
of her sickness is to gather up the puzzle pieces
into one box. She contacts every hospital, every doctor, every
medical testing lab she has ever visited, and organizes all
for medical records.
Speaker 1 (24:01):
I first started with like our TV doctor.
Speaker 2 (24:03):
So I asked you, so, what kind of doctor would
deal with like a constant infection?
Speaker 1 (24:08):
Because that's what I was told.
Speaker 2 (24:09):
The ad anopathy came from, Oh, you need an immunologist
or a rheumatologist. I didn't know those ologists, and so
I found the Castleton Guide and it said ranks all
the doctors in hospital the best of the best every
year because they might be able to know the answers.
And so I wrote that down, and then I set
about making an appointment with every single one of them.
Speaker 5 (24:29):
You did something else, which was daunting, given the time
period you accumulated all of your medical records.
Speaker 2 (24:39):
At that time, they were just starting to do those things.
You know, now I can connect all different hospitals together.
We couldn't do that. So, like you said, I had
a spinal tap at Saint Luke Roosevelt, so I got
to go there. And I had this done at Saint Mary's.
So now I got to go there or call there.
I got to fill out the form. I gotta fax
it back. I got to wait for them to mail
me the slides and the CD disc with all your
images on. People don't realize like back then they used
(25:00):
to actually give you the actual X rays. It was
an actual sheet of an X ray with my brain
on it to show them when I had the tia.
And this is actually the disc when they did the
sky out of my belly. So I collected this whole thing,
and I ended up with this ginormous folder. For the
first time, it occurred to me, maybe this is all
sort of one thing.
Speaker 4 (25:19):
Armed with only two or three pieces of that information,
if it was felt to be reliable, could have made
all the difference in the world. So it's a terrible
irony in this world where information flows so freely, in
many cases, we still have a terrible time getting patients
(25:40):
medical records across town from one hospital to another, and
this leads to a real bottleneck, a real roadblock in
helping patients get to the right diagnosis.
Speaker 5 (25:54):
Nika's research brings her back to the list of the
ten best roomatologists in New York. The first three don't
work out, but Nika keeps at it, and she schedules
in to see doctor number four.
Speaker 2 (26:08):
She had looked at my file beforehand, and some of
the blood tests and the images that were done, and
so by the time I had an appointment there, she
had already had a good idea as to what she
thought was wrong with me, which was an earth shattering moment.
Speaker 5 (26:23):
Take me to that exact moment, because I cannot imagine
what that must have been like for you. Seventeen years.
Speaker 1 (26:34):
Yeah.
Speaker 2 (26:34):
It was odd because before she even examined me, she said, well,
I looked at your file, and I looked at it.
Speaker 1 (26:40):
I think I know what's going on.
Speaker 2 (26:41):
And I thought, hold on every place I've ever been,
I've given more blood than I probably have in my body. Now,
all of the tests and all of the doctors, and
not one person thought to run this one test. And
she took out a piece of paper, her little pad
with her name on the top, and she scrolled some weird,
random collection of letters, and I was like, what is that?
(27:03):
As she said, it's a rare condition, but I think
you have that. She wrote down that I have something
called IgG four rd.
Speaker 5 (27:14):
Do you remember that phone call when she told you
I have a name for it. I think I know
what I have.
Speaker 3 (27:20):
Yeah, I would equate it with me being a kid
at waiting for Christmas gifts. She was as joyous as
you can be knowing you have a medical condition. But
not knowing is oh man, not knowing is pain. To
not know, it's almost a crime against her, it's unfair.
But to know, to have beaten that, it's almost like
(27:42):
a victory. I know what this road is called. I
know what this journey is I know what is wrong
with me. It's like the mystery of a lifetime.
Speaker 2 (27:52):
It's joy to find out that you know a name,
but also sadness knowing that nobody else knows what the
heck this is.
Speaker 1 (27:58):
So now what do we do?
Speaker 2 (28:00):
Nobody else has heard of it, Nobody else knows what
that means for your life, for your expectancy, your quality
of life, any of those things.
Speaker 5 (28:07):
Now armed with a name for the condition she's been
fighting for almost two decades, Nika applies her journalistic skills
to track its foremost expert, a leader in the field
who was one of the first doctors to identify IgG
four related disease in the United States, Doctor John H. Stone.
Speaker 4 (28:27):
I should first say that IgG four is an antibody
that we all have. In IgG four related disease, levels
of this antibody often become very, very high. It is
a multi organ inflammatory disease. It's mediated by the immune system,
(28:47):
but we don't really know what kicks off the process
to begin with. It can involve any organ system in
the body. So, for example, if the pancreas is targeted
and the pancreas is a major organ then patients can
become diabetic. If the kidneys are involved, the kidneys can fail.
(29:09):
If the sinuses are involved, then sinus involvement can lead
to a great risk of infections, which ultimately can be lethal.
The word that comes to mind that we use in
medicine a lot to describe a disease that has many
faces is protean. It's one of the most protean diseases
(29:33):
that I know of.
Speaker 5 (29:35):
I imagine it is extremely difficult for pathologists and physicians to
distinguish it from similar manifesting diseases.
Speaker 4 (29:44):
That's right. IgG four related disease mimics many diseases and
is mimicked by many diseases. It is remarkable when one
talks to patients how commonly it comes up that they
were misdiagnosed as having cancer. They were told they had
metastatic or inoperable cancer of the pancreas, the lungs, the kidneys,
(30:08):
or that they had lymphoma, which is a cancer of
the lymph system.
Speaker 5 (30:13):
What is your role as a leader on the forefront
of IgG four RG medical treatment.
Speaker 4 (30:21):
Well, I have a history with this disease going back
eighteen years now, and it wasn't even called IgG four
related disease. Then it was a couple of years later
that the world decided IgG four related disease was the
most appropriate name. With colleagues at Mastheusetsal Hospital, I organized
(30:43):
the world's first symposium on the disease, held in Boston
in October of twenty eleven. My group observed very early
on that B cell depletion was a very effective therapy
for IgG four related disease. It took a long time
to convince pharmaceutical industry that we ought to be studying
(31:07):
B cell depletion in a formal way in a randomized,
double blind, placebo control trial, and the results of that
trial proved that B cell depletion was far superior to
conventional treatment with steroids for the management of patients with
with IgG four related disease.
Speaker 5 (31:28):
Did it surprise you that it took her seventeen years
to get a proper diagnosis and why or why not
it did?
Speaker 4 (31:37):
But I do think given that IgG four related disease
wasn't even recognized to be a unique diagnosis until two
thousand and three, and then it was really another four
or five years before people in the United States began
to become aware of the condition. I think that goes
a long way toward explaining why it took such a
(31:58):
long time, though I think they're probably other reasons too.
Speaker 5 (32:01):
Nika had been battling symptoms for six years before the
disease was even named, in almost a decade before it
was known in the US.
Speaker 4 (32:11):
It is an unconscionably long time to wait to come
to a diagnosis for a disease that is so treatable,
So it's very unfortunate.
Speaker 5 (32:21):
The diagnosis, to me, is also incredible because from what
they did know, you didn't exactly fit the stereotype of
who was being diagnosed with this and at that age, No.
Speaker 2 (32:35):
I was too young, I was too black, I was
a woman. At that time, they thought it was men
over white men over fifty Asian men, not certainly not
black women in their twenties. That was not something that
most people thought about at all, or women at all.
And to me, it was even more interesting that it
was discovered by guy in Boston when I was in
bosson the whole time.
Speaker 5 (32:56):
Because IgG four rd is still being understood, Nica's treatment
is constantly evolving, the treatment itself, fairies, depending upon her
given symptoms at the moment corticosteroid helps during flare ups,
and an anti rheumatic works to keep them at bay.
A proton pump inhibitor deals with her gastrointestinal issues, and
(33:16):
she takes medication to keep her blood pressure and cholesterol low.
Although Nika is now able to treat her symptoms with
accuracy and an understanding of the root cause, she still
has good days and bad days. Mark is there with
Nica through all of them. Their lasting partnership is a
walking example of in sickness and in health.
Speaker 2 (33:39):
I said to him that I just wanted to make
sure that he understood what he was signing up for.
I don't want to strap somebody with a burden that
they may not be consciously thinking about. I also wanted
him to stop and think about it because he had
a child, And I said, in what you choose for
yourself is one thing, but now this profoundly changes the
life of your child to be with somebody who's chronically you,
(34:00):
because now they have to deal with sometimes Nica can't
do this, and she can't do that. She's having a
bad day today. What I learned is the children are
highly adaptable. His son just got used to it. You
go get the pills. We made up games to play
in the bed when I had days when I couldn't
get out of the bed.
Speaker 5 (34:15):
It's an obstacle.
Speaker 1 (34:17):
It's gonna suck.
Speaker 3 (34:18):
We're gonna get through this, but we're gonna have laughs
about it. We're gonna joke about it. Occasionally, we're gonna
cry about it. I have to hide my tears. She's
got a great smile, especially when you get it out
of her, especially when she's in pain. I almost made
it a mission to get her to laugh, to get
(34:38):
a smile out of her, to dance a little in
the rain.
Speaker 1 (34:42):
Rain has been in her forecast a little too much,
so to be ordered to.
Speaker 3 (34:47):
Dance in the rain with her is one of my
It's one of my guilty pleasures, just to get her
to laugh when she's down, get it to have some
fun and circumstance where most people are.
Speaker 1 (34:59):
Like, how could you even matters?
Speaker 4 (35:00):
To have fun.
Speaker 5 (35:02):
It's one of the reasons.
Speaker 4 (35:03):
Why I love her.
Speaker 2 (35:05):
When we finally got married, they wrote about our wedding
and the wedding section of the New York Times, and
it said in sickness and health and then a wedding.
And I always thought of him that way that he
always understood what those valves were long before we took them,
because he never flinched about the in sickness part.
Speaker 5 (35:20):
Oh boy, yeah, the sickness part.
Speaker 1 (35:24):
I think a lot of people take that for granted.
It's a reality.
Speaker 3 (35:27):
You can't make it to the altar and not mean that,
because you know that's part of the roads you're.
Speaker 5 (35:33):
On, Doctor Stone, What most inspires you or what can
you leave us with about working with IgG four related
disease patients?
Speaker 4 (35:49):
I couldn't be more optimistic about the future for people
living with IgG four related disease now. I think there's
every reason to believe medical brisk breakthroughs in IgG four
or late disease are going to continue at a growing
pace in the very near future. We can understand the
path of physiology, we can do clinical trials, we can
(36:12):
get medications approved, but none of that is more important
than educating people about the condition that they have, helping
them understand it, and helping them learn to live with it.
Speaker 5 (36:24):
Well, you are so resilient and you have just very quiet,
strong confidence about the way in which you have navigated
your health challenges. Nico, what do you want people to
take away from your story.
Speaker 2 (36:45):
I think what I did learn was from my mother.
I remember once being like, I'm really sad that this
is happening, and she said, because you're looking at the
big picture, why don't you look at the small picture?
And I said, what's the small picture?
Speaker 1 (37:00):
It's live long enough.
Speaker 2 (37:01):
Just live long enough for today, Live long enough to
feel better to get up in the morning, Live long
enough for them to come up with a new medication.
Live long enough to finish that task that you have,
maybe not today, but possibly tomorrow. You just have to
live long enough to get over the next hurdle.
Speaker 1 (37:16):
That's all you have to do.
Speaker 2 (37:18):
And when you take it and bite size morsels, it's
really possible to see that you can get it all done.
I can't walk fifteen miles every day, but when we
went to Lake George, I was able to walk as
many steps as I needed to have a good day
with my husband. So I live long enough to just
enjoy today. I'll worry about tomorrow or tomorrow.
Speaker 5 (37:43):
For more on IgG four related diseases, visit IgG four
word dot org. That's IgG number four word dot org.
You can read more about Nika's story in her book
misdiagnosed the search for doctor house and follow along on
her website Nicabeeman dot com.
Speaker 2 (38:03):
I'm Nica Beeman van Scheck and I was diagnosed with
IgG four RD after seventeen year search.
Speaker 5 (38:13):
On next week's episode of Symptomatic. From the moment Halee
Sanchez started her period, she could tell that something was
very different. Suffering debilitating minstrel cramps and intense bleeding, Haley
spent half of every month fighting just to stand up.
When she joined the Air Force as a medic, Haley
did not predict how agonizing her symptoms would become.
Speaker 1 (38:36):
I wasn't willing to risk being held back in boot camp,
so I just kept pushing through. The pain got so
bad within an instant, it just kind of went black.
Speaker 5 (38:47):
Consistently dismissed by military doctors, Haley suffered in silence for
years before finally getting the test that would reveal a
condition so rare that they had never seen it before.
As always, we would love to hear from you. Send
us your thoughts on this episode or share a medical
mystery of your own at Symptomatic at iHeartMedia dot com,
(39:10):
and please rate and review Symptomatic wherever you get your podcasts.
We'll see you next time. Until then, be Well. Symptomatic,
a medical mystery podcast, is a production of iHeartMedia's Ruby Studio.
Our show is hosted by me Lauren Brightbacheco. Our executive
producers are James Foster, Matt Ramano, and myself. Our supervising
(39:34):
producers are Ryan Ovadia, Haley Aliah Ericson, and Daniel Ainsworth.
This episode was written by Haley Aliah Ericson and edited
by Daniel Ainsworth.
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