Case #26: Nika

Summary

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Symptomatic: A Medical Mystery Podcast

Case #26: Nika

Host: Lauren Bright Pacheco
Date: November 4, 2025

Episode Overview

This episode explores the 17-year medical odyssey of Neeka Beaman Van Scheck, an Emmy-winning journalist whose life is upended by perplexing, undiagnosed symptoms. Host Lauren Bright Pacheco guides listeners through Neeka’s tenacity in seeking answers, the emotional and logistical tolls of her chronic illness, and the ultimate relief—and complexity—of finally receiving a diagnosis: IgG4 Related Disease, a rare and oft-overlooked autoimmune condition. The episode shines a light on the obstacles faced by patients with mysterious illnesses, the shortcomings of the medical system, and the resilience required to advocate for oneself.

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Key Discussion Points & Insights

Neeka’s Background and Early Symptoms

• High Achiever and Early Signals
  • Neeka describes herself as “the oldest” with two younger brothers and speaks of her “tenacious and full of personality” upbringing, heavily influenced by her adventurous, resilient father. [01:37–03:14]
  • Early symptoms in college: extreme fatigue, joint pain, dry mouth and eyes, burning in her eyes, recurring headaches. “I started having all kinds of what I consider unusual symptoms… and then I started having these debilitating headaches that I thought were migraines.” (Neeka) [04:38]
  • Despite frequent doctor visits: “I started to collect things I knew I didn’t have, but that wasn’t getting me any closer to what I did have.” (Neeka) [05:09]
• Becoming Her Own Advocate
  • Years of unexplained illnesses led Neeka to regularly treat symptoms in isolation, without a unifying diagnosis. “We were treating a set of symptoms, but not all the symptoms.” (Neeka) [06:14]

Living with a Mysterious Illness

• Personal and Financial Strain
  • The cost of managing her health was immense: “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 relatively functioning.” (Neeka) [10:40]
  • Emotional toll: “You don’t even tell the people who are supposed to be closest to you… how much it’s costing me to be me.” [10:40]
• Relationship and Support
  • Husband Mark reflects on his role: “She generally doesn’t care what people think about the decision she’s made… She’s going to hop over every obstacle and head in the direction where she needs to go.” (Mark) [08:53]
  • Mark also discusses advocating for Neeka in emergency situations, especially when her medications led to misunderstandings about her condition. [18:40–20:35]
  • “She is driving down a road. It has hazards, but she doesn’t know the name of the road… she is determined to know… what road I am on.” (Mark) [13:43]

The Medical Maze

• Long Path to Diagnosis
  • Over 17 years, Neeka’s symptoms worsen: intense fatigue, headaches, joint pain, dry eyes, hormonal imbalances.
  • Major medical events: “I was driving on the New Jersey Turnpike and everything sort of went blurry… like somebody stabbed me in the side of the head with an ice pick.” (Neeka) [00:08, 14:17, 15:39]
  • Doctors often misattributed her symptoms or treated individual complaints: “I’m just going to each individual doctor and getting them to treat whatever symptoms they treat.” (Neeka) [06:14]
  • Physical Manifestation: Swollen neck and lymph nodes lead to multiple surgeries. “Whatever this is, it’s killing me, and I need to know what it is. I wasn’t ready to die.” (Neeka) [21:34]

Taking Control: Own Research and Medical Records

• Organization and Persistence
  • Compiled her complete medical records from every hospital, lab, and practice: “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.” (Neeka) [24:39]
  • Targeted search for top rheumatologists; fourth on the list recognized her case: “She scrolled some weird random collection of letters… It’s a rare condition, but I think you have that… IgG4RD.” (Neeka) [26:34]
  • Moment of Revelation: Mark describes receiving the diagnosis as “almost like a victory. I know what this road is called. I know what this journey is.” [27:20]

Understanding IgG4 Related Disease (IgG4RD)

• Expert Insight (Dr. John H. Stone)
  • Describes the elusive, multi-organ nature of the disease: “The disease is like a crow flying through the dark night. Patients go months or years incurring damage in all of these organs.” (Dr. Stone) [00:26, 17:51]
  • IgG4RD mimics many diseases, often misdiagnosed as cancer or other conditions. “It is a multi-organ inflammatory disease… one of the most protean diseases that I know of.” (Dr. Stone) [28:26, 29:35]
  • Only officially recognized as a diagnosis starting in 2003. Dr. Stone’s team was instrumental in characterizing the disease and demonstrating that B cell depletion is a highly effective treatment. [30:22]
• Barriers to Timely Diagnosis
  • “It’s an unconscionably long time to wait to come to a diagnosis for a disease that is so treatable.” (Dr. Stone) [32:12]
  • Demographics of the disease: Early research didn’t include patients like Neeka. “No, I was too young. I was too black. I was a woman. At that time they thought it was men over 50… not black women in their 20s.” (Neeka) [32:34]

Living With the Diagnosis and Moving Forward

• Treatment
  • Neeka manages the disease with corticosteroids, antirheumatics, and medication for related symptoms. “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.” [32:56]
• Family and Adaptation
  • Mark and his son adapt to life with Neeka’s illness. “I almost made it a mission to get her to laugh, to get a smile out of her, to dance a little in the rain. Rain has been in her forecast a little too much.” (Mark) [34:15]
  • New York Times featured their wedding story in “in sickness and health…” section. “He always understood what those vows were long before we took them because he never flinched about the in sickness part.” (Neeka) [35:05]

Hope, Lessons, and Takeaways

• Perspective on Chronic Illness
  • Neeka shares her survival philosophy, inspired by her mother:

    “Live long enough just for today… Live long enough for them to come up with a new medication. Live long enough to finish that task you have… Take it in bite sized morsels, it’s really possible to see that you can get it all done.” (Neeka) [36:45]

• Optimism for the Future
  • Dr. Stone: “I couldn’t be more optimistic about the future for people living with IgG4 related disease.” [35:48]

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Memorable Quotes

• On Persistence and Identity:

  • “No is not an answer. I’m just going to move around you… She will hurdle over that obstacle. She will go around that obstacle. She will blow up that damn obstacle. She’s going to find an answer.”
    — Mark Van Scheck [23:24]

• On Diagnosis After Years of Mystery:

  • “It’s joy to find out that you know a name, but also sadness knowing that nobody else knows what the heck this is. So now what do we do?”
    — Neeka Beaman Van Scheck [27:52]

• On Systemic Barriers:

  • “It’s a terrible irony in this world where information flows so freely… we still have a terrible time getting patients’ medical records across town from one hospital to another.”
    — Dr. John H. Stone [25:19]

• On Living With Chronic Illness:

  • “I can’t walk 15 miles every day, but… I was able to walk as many steps as I needed to have a good day with my husband. So I lived long enough to just enjoy today. I’ll worry about tomorrow.”
    — Neeka Beaman Van Scheck [36:45]

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Timeline of Important Segments

| Timestamp | Segment/Event | |-----------|---------------------------------------------------------------------------------------------------------------------------| | 00:08 | Neeka’s first terrifying episode of sudden headache and vision loss | | 04:38 | Description of Neeka’s earliest symptoms in college | | 06:14 | Treating symptoms in isolation, without cohesive diagnosis | | 10:40 | Neeka reveals the immense financial cost of her undiagnosed illness | | 13:43 | Mark’s analogy: “She is driving down a road. It has hazards, but she doesn’t know the name of the road.” | | 15:39 | Blinding attack while driving; near accident and panic | | 21:34 | Swollen neck and the realization of a possibly deadly condition | | 24:39 | Neeka organizes her complete medical records to identify patterns | | 26:34 | Earth-shattering moment: rheumatologist suggests IgG4RD as a diagnosis | | 28:26 | Dr. Stone explains IgG4RD’s characteristics and challenges | | 32:34 | Neeka doesn’t fit the expected demographic for IgG4RD | | 34:15 | Mark describes his dedication to helping Neeka “dance in the rain” amid adversity | | 36:45 | Neeka’s philosophical takeaway: living for today and incremental progress, advice from her mother |

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Final Takeaways

• The journey of chronic, undiagnosed illness is isolating, expensive, and emotionally taxing, even for the most resourceful and persistent.
• Systemic barriers to diagnosis—fragmented medical records, bias, lack of physician awareness—still persist, but patient advocacy and specialist persistence can eventually yield answers.
• Receiving a diagnosis can bring immense relief, but also introduces new uncertainty, especially with rare diseases.
• Support systems—family, spouses, and supportive physicians—are crucial for resilience.
• Hope lies in ongoing medical research, increased awareness, and treating life as a series of achievable steps.

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For more on IgG4-related diseases:
Visit igg4ward.org

Read more about Neeka Beaman Van Scheck’s story:
Book: The Search for Dr. House
Website: nikabeeman.com

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Transcript

[Mark Van Scheck]

Ruby.

[Neeka Beaman Van Scheck]

I was driving on the New Jersey Turnpike and everything sort of went blurry. It was like somebody stabbed me in the side of the head with an ice pick.

[Mark Van Scheck]

She literally lost the ability to see doing 65 miles an hour. It's God holding the wheel at that point.

[Dr. John H. Stone]

The disease is like a crow flying through the dark night. Patients go months or years, incurring damage in all of these organs.

[Neeka Beaman Van Scheck]

I can't see and I'm in terrible pain. I gotta get somewhere safe, so I just gotta keep going.

[Lauren Bright Pacheco]

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 suffer from some chronic illness and many struggle for an accurate diagnosis. These are their stories. I'm Lauren Brad Pacheco and this is symptomatic. Nika Beaman Van Scheck 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 20s for her coverage of 9 11. Even as a young person, Nika was tenacious and full of personality.

[Neeka Beaman Van Scheck]

I'm the oldest. I have two brothers. I have one that's exactly four years apart. And then we have what we call the oops baby, who was 15 years younger than me. So I was picking colleges and he was carrying around stuffed animals.

[Lauren Bright Pacheco]

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.

[Neeka Beaman Van Scheck]

They have no love of sports. I'm the only one. I always say that. My father had me first and 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. I have more of his temper, unfortunately. So I was more of my father's son than his own sons.

[Lauren Bright Pacheco]

And not just any organized sports. You choose ice hockey and baseball once you get to boarding school.

[Neeka Beaman Van Scheck]

Yeah. And 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 IX 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. And I made the team. And then by the next year, we had another girl. So, you know, I kind of ruined.

[Lauren Bright Pacheco]

The whole team or maybe improved it that much more. 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 seem to have a particular bond. How did his raising you impact your personality?

[Neeka Beaman Van Scheck]

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 in a segregated south with one parent. You know, 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 he, at some point, was homeless on the subway. He ended up joining the police academy, then going to the Air Force. Then he got sick in the Air Force and ended up having to come out. But he had done so many things. Then he decided he was going to go to college. 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 Riders 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 up always seeing people writing and doing those kind of things.

[Lauren Bright Pacheco]

At a young age, Neeka 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, Neeka was a standout student and an active member of club sports teams. She was headed towards a future at full speed, seemingly unstoppable. Around this time, as you're getting ready to graduate from college, you start noticing that something is amiss in terms of your health.

[Neeka Beaman Van Scheck]

In 1993, 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 the point where my vision would actually get blurry, which was strange because I had 2020 vision. And then I started having these debilitating headaches that I thought were migraines. And I'm like, what in the world is happening to me?

[Lauren Bright Pacheco]

So you're frequently visiting the infirmary and getting no answers?

[Neeka Beaman Van Scheck]

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. So I started to collect things I knew I didn't have, but that wasn't getting me any closer to what I did have.

[Lauren Bright Pacheco]

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.

[Neeka Beaman Van Scheck]

It wasn't until, like, a couple of years after then, 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 you start to really see the pattern.

[Lauren Bright Pacheco]

So at this point, a few years into this, not feeling well is becoming a new normal for you, but you moved to New York City and are living your life when out of nowhere, you end up in the emergency room because of a massive bleeding. What happened?

[Neeka Beaman Van Scheck]

I was very sick, and I was having a hemorrhage. And they said to me, we think you have pcos. You might have ruptured a cyst. And that's what the problem is. And I said, oh, okay. So I have pcos. I just need some medications. So they give me medication for that. And I go, great, then I should be good. Except for I 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, and he goes, oh, no problem. We can just make your brain not know that it has pain, so we'll give you this drug. And I'm like, okay, no problem. That's great. And I go, I'm tired. And somebody goes, you know what's great for fatigue? You can just take some Ritalin. 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 symptoms they treat.

[Lauren Bright Pacheco]

While Neeka 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.

[Dr. John H. Stone]

I am John H. Stone. I am a professor of medicine at Harvard Medical School and a rheumatologist at the Massachusetts General Hospital.

[Lauren Bright Pacheco]

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. What drew you to rheumatology?

[Dr. John H. Stone]

The multi organ nature of diseases. I've 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 the field.

[Lauren Bright Pacheco]

Meanwhile, in New York, Neeka 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 lovely wife, how would you describe Nika?

[Mark Van Scheck]

Tough, soft, kind, caring. She's fun, she's funny, she's a really good comedian. When she doesn't try and be, I think those are the adjectives I would use.

[Lauren Bright Pacheco]

What do you love most about her personality?

[Mark Van Scheck]

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 head in the direction where she needs to go.

[Lauren Bright Pacheco]

Did you have any idea when you first met that she was navigating all these health issues?

[Mark Van Scheck]

No, I just thought she was a pain in the ass sometimes on a hard, hard egg 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. What's going on? Why do you need to take pills? 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.

[Lauren Bright Pacheco]

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?

[Mark Van Scheck]

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.

[Lauren Bright Pacheco]

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.

[Neeka Beaman Van Scheck]

It is devastating. They tell you, 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, how much it's costing me to be me. 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 relatively functioning.

[Lauren Bright Pacheco]

Did you ever get gaslit, that it's in your head that maybe you didn't have all the symptoms you thought you had?

[Neeka Beaman Van Scheck]

No, I did not. 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. Then it's not that bad. Then come back when it gets worse.

[Lauren Bright Pacheco]

Over 10 years into her struggle, Neeka 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 Dr. Stone unfortunately knows all too well.

[Dr. John H. Stone]

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. To the workup that's been done already.

[Lauren Bright Pacheco]

How, as a physician, do you help patients navigate the unknown in terms of the psychological component?

[Dr. John H. Stone]

You 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 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.

[Lauren Bright Pacheco]

You're fast approaching 15 years at this point without a diagnosis, and you've been so sick and in terrible pain for a lot of that time. But you keep pushing. In your career, in life, did you ever feel like giving up?

[Neeka Beaman Van Scheck]

It was just one of those things where you just learn 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. So it's very difficult to be that and be a good patient. And 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.

[Mark Van Scheck]

She is driving down a road. It has hazards, but she doesn't know the name of the road. And as medical issues start piling onto each other, she is determined to know, what are these obstacles? What road I am on to make sure you make the right turn when the turn is there.

[Lauren Bright Pacheco]

That road is about to become even more hazardous for Neeka with a new deadly obstacle materializing out of nowhere.

[Neeka Beaman Van Scheck]

I was coming back from Baltimore. I was driving on the New Jersey Turnpike, and I wasn't feeling well again. I was having a terrible headache. It was like somebody stabbed me in the side of the head with an ice pick. But I'm panicked, and I closed my eyes for a split second. I was in the second lane. Opened my eyes again, and everything was blurry. I couldn't see.

[Lauren Bright Pacheco]

We'll be right back with Symptomatic, a medical mystery podcast. Now back to Symptomatic, a medical mystery podcast. Over 15 years out from the start of her symptoms, Neeka has been living with a mysterious illness. Now for over a third of her life, she's been taking medication for insulin resistance, 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 2009, and Nika's driving home to New York from a book tour in Baltimore, when all of the sudden, she is hit with unthinkable pain.

[Neeka Beaman Van Scheck]

I was driving on the New Jersey Turnpike. It was like somebody stabbed me 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. Oh, my God. I know that I. I'm in trouble here, and I'm starting to sort of, you know, have those internal conversations with yourself, and I'm panicked.

[Lauren Bright Pacheco]

Were you terrified?

[Neeka Beaman Van Scheck]

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 brake 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. I stopped and thankfully my phone was in the cup holder and I called my then boyfriend and said, something's wrong, you've gotta come get me.

[Lauren Bright Pacheco]

What was going through your head in the minutes between making that call and having your then boyfriend actually show up at the car?

[Neeka Beaman Van Scheck]

That's sort of when the panic sets in because you're not sure what's happening. I was like, am I going blind? Is there like some kind of tumor?

[Lauren Bright Pacheco]

So then I'm sure you go straight to the emergency room, right?

[Neeka Beaman Van Scheck]

We go to the emergency room. They're like, your blood pressure's elevated. So they do the spinal tap. 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 test and all that stuff. And he says, I mean, your blood pressure's relatively normal. You probably just need to work out more and take this water pill and you'll be good.

[Lauren Bright Pacheco]

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.

[Dr. John H. Stone]

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 the disease now as difficulty getting to the right diagnosis.

[Lauren Bright Pacheco]

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.

[Mark Van Scheck]

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 afford off label use. So we're trying to explain to this nurse that she is not a diabetic, don't treat her like a diabetic. But no, she's on metformin, she has to be a diabetic. And I'm like, she's not. All these drugs are taken for off 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, you have to leave. Pardon? Why do I have to leave? My wife is in the back. I'm her medical proxy. If any decision's made, if any blood is drawn, if a band aid'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, 10 minutes later, Nika comes out of the ER door with her pants on, with her gown on, but falling off. And the officer's like, where are you going? You can't leave. She's like, oh, yes I can. I'm allowed to sign myself out at any time. Why is he sitting here? Why is he not in the er? And I look and I go, told ya. 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 diabetic or she's going to treat her like this or that and they're not going to treat it properly.

[Lauren Bright Pacheco]

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.

[Neeka Beaman Van Scheck]

2014, everything changes. I wake up one day and I have people say like a goiter looking neck, it's like swollen, it looks like a bullfrog and I don't know why. And so I go to the doctor and she says, you have swollen lymph nodes, you have adenopathy. And she goes, it's not a big deal, you must have some 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.

[Lauren Bright Pacheco]

This is the first time that you have something that is a physical manifestation of what you're fighting?

[Neeka Beaman Van Scheck]

Yeah. Something that's really impeding me in a way that I realize that I have to do something. And I go and I go to a different doctor. 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 didn't tell you? She suspected lymphoma. And that was when 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.

[Lauren Bright Pacheco]

How did they explain what was happening to your lymph nodes?

[Neeka Beaman Van Scheck]

We don't know what they're reacting to, but they're reactive. 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, because now there are more of them. 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 do with this. 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 adenopathy 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 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.

[Lauren Bright Pacheco]

When Neeka activates her dogged search mode, what happens? Does she always get an answer to her question?

[Mark Van Scheck]

No is not an answer. I'm just going to move around you. I'm going to go over you. I'm going to go past you. I'm going to get my answer. She will hurdle over that obstacle. She will go around that obstacle. She will blow up that damn obstacle. She's going to find an answer.

[Lauren Bright Pacheco]

Nika 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 of her medical records.

[Neeka Beaman Van Scheck]

I first started with, like, our TV doctor. So I asked, I said, what kind of doctor would deal with, like, a constant infection? Because that's what I was told the adenopathy 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 hospitals 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.

[Lauren Bright Pacheco]

You did something else, which was daunting, given the time period. You accumulated all of your medical records.

[Neeka Beaman Van Scheck]

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 I said, I had to spinal tap at St. Luke's Roosevelt. So I gotta go there. And I had this done at St. Mary's so now I got to go there or call there. I got to fill out the form, I got to fax it back. I got to wait for them to mail me the. The slides and the CD disc with all your images on it. People don't realize. Like, back then, they used 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 scan 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.

[Dr. John H. Stone]

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 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.

[Lauren Bright Pacheco]

Neeka's research brings her back to the list of the 10 best rheumatologists in New York. The first three don't work out, but Neeka keeps at it, and she schedules in to see doctor number four.

[Neeka Beaman Van Scheck]

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.

[Lauren Bright Pacheco]

Take me to that exact moment, because I cannot imagine what that must have been like for you. 17 years.

[Neeka Beaman Van Scheck]

Yeah. It was odd because before she even examined me, she said, well, I looked at your file and I looked at it, I think I know what's going on. 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? And she said, it's a rare condition, but I think you have that. She wrote down that I have something called igg4rd.

[Lauren Bright Pacheco]

Do you remember that phone call when she told you I have a name for it? I think I know what I have.

[Mark Van Scheck]

Yeah. I would equate it with me being a kid 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 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.

[Neeka Beaman Van Scheck]

It's joy to find out that you know a name, but also sadness knowing that nobody else knows what the heck this is. So now what do we do? 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.

[Lauren Bright Pacheco]

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 IgG4 related disease in the United States. Dr. John H. Stone.

[Dr. John H. Stone]

I should first say that IgG4 is an antibody that we all have in IgG4 related disease. Levels of this antibody often become very, very high. It is a multiorgan inflammatory disease that's mediated by the immune system. 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. If the sinuses are Involved, then sinus involvement can lead to, 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 that I know of.

[Lauren Bright Pacheco]

I imagine it is extremely difficult for pathologists and physicians to distinguish it from similar manifesting diseases.

[Dr. John H. Stone]

That's right. IgG4 related DISE 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 that they had metastatic or inoperable cancer of the pancreas, the lungs, the kidneys, or that they had lymphoma, which is a cancer of the of the lymph system.

[Lauren Bright Pacheco]

What is your role as a leader on the forefront of IgG4RD medical treatment?

[Dr. John H. Stone]

Well, I have a history with this disease going back 18 years now. And it wasn't even called IgG4 related disease then. It was a couple of years later that the world decided IgG4 related disease was the most appropriate name. With colleagues at Massachusetts General Hospital, I organized the world's first symposium on the disease held in Boston in October of 2011. My group observed very early on that B cell depletion was a very effective therapy for IgG4 related disease. It took a long time to convince pharmaceutical industry that we ought to be studying B cell depletion in a formal way in a randomized double placebo controlled 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 IgG4 related disease.

[Lauren Bright Pacheco]

Did it surprise you that it took her 17 years to get a proper diagnosis? And why? Or why not?

[Dr. John H. Stone]

It did. But I do think, given that IgG4 related disease wasn't even recognized to be a unique diagnosis until 2003, 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 long time, though. I think there are probably other reasons too.

[Lauren Bright Pacheco]

Nika had been battling symptoms for six years before the disease was even named, and almost a decade before it was known in the US it is an.

[Dr. John H. Stone]

Unconscionably long time to wait to come to a diagnosis for a disease that is so treatable. So it's very unfortunate.

[Lauren Bright Pacheco]

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.

[Neeka Beaman Van Scheck]

No, I was too young. I was too black. I was a woman. At that time. They thought it was men over white, men over 50, Asian men, not, certainly not black women in their 20s. 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 a guy in Boston when I was in Boston the whole time.

[Lauren Bright Pacheco]

Because igg4rd is still being understood, Neeca's treatment is constantly evolving. The treatment itself varies depending upon her given symptoms. At the moment, a corticosteroid helps during flare ups, and an antirheumatic works to keep them at bay. A proton pump inhibitor deals with her gastrointestinal issues, and 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 Neeka through all of them. Their lasting partnership is a walking example of in sickness and in health.

[Neeka Beaman Van Scheck]

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 to him, 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 ill because now they have to deal with. Sometimes Nika can't do this and she can't do that. She's having a bad day.

[Mark Van Scheck]

Today.

[Neeka Beaman Van Scheck]

What I learned is that children are highly adaptable. His son just got used to it. He'd 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.

[Mark Van Scheck]

It's an obstacle. It's going to suck. We're going to 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 a smile out of her, to dance a little in the rain. Rain has been in her forecast a little too much. So to be ordered to dance in the rain with her is one of my. One of my guilty Pleasures is to get her to laugh when she's down, get her to have some fun in circumstance where most people are like, how could you even manage to have fun? It's one of the reasons why I love her.

[Neeka Beaman Van Scheck]

When we finally got married, they wrote about our wedding in 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 vows were long before we took them because he never flinched about the in sickness part. Oh, boy.

[Dr. John H. Stone]

Yeah.

[Mark Van Scheck]

The sickness part. I think a lot of people take that for granted. It's a reality. Like, you can't make it to the altar and not mean that because you know that's part of the road you're on.

[Lauren Bright Pacheco]

Dr. Stone, what most inspires you or what can you leave us with about working with IgG4 related disease patients?

[Dr. John H. Stone]

I couldn't be more optimistic about the future for people living with IgG4 related disease. Now, I think there's every reason to believe medical breakthroughs in IgG4 related disease are going to continue at a growing pace in the very near future. We can understand the pathophysiology, we can do clinical trials, we can 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. Well.

[Lauren Bright Pacheco]

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?

[Neeka Beaman Van Scheck]

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? Said it's live long enough. 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. That's all you have to do. And when you take it in bite sized morsels, it's really possible to see that you can get it all done. I can't walk 15 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 lived long enough to just enjoy today. I'll worry about tomorrow.

[Lauren Bright Pacheco]

Tomorrow. For more on IgG4 related diseases, visit igg4word.org that's IgG number four ward.org you can read more about Neeka's story in her book the Search for Dr. House and follow along on her website nikabeeman.com.

[Neeka Beaman Van Scheck]

I'm Neeka Beaman Van Scheck and I was diagnosed with IgG4RD after a 17.

[Lauren Bright Pacheco]

Year search on next week's episode of Symptomatic. From the moment Haley Sanchez started her period, she could tell that something was very different. Suffering debilitating menstrual 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.

[Neeka Beaman Van Scheck]

I wasn't willing to risk being held back in boot camps, so I just kept pushing through. The pain got so bad, within an instant it just kind of went black.

[Lauren Bright Pacheco]

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 your own@ symptomaticiheartmedia.com 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 I Heart Media's Ruby Studio. Our show is hosted by me, Lauren Bright Pacheco. Our executive producers are James Foster, Matt Romano, and myself. Our supervising producers are Ryan Ovadia, Haley Aliyah Erickson, and Daniel Ainsworth. This episode was written by Haley Aliyah Erickson and edited by Daniel Ainsworth.