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.

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]

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]

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 |

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.

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