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