The Medical Detectives – Claire & Suzanne's Story: TwinTuition

Date: October 8, 2025
Podcast: The Medical Detectives (Soft Skills Media)
Hosts: Dr. Erin Nance & Anna O’Brien
Guests: Claire Montgomery & Suzanne Montgomery (identical twins)

Episode Overview

This episode, “Claire & Suzanne's Story: TwinTuition,” explores the fascinating, frustrating and ultimately triumphant tale of identical twin sisters whose shared and mysterious symptoms led them on a prolonged, winding path through the American medical system. In signature Medical Detectives style, hosts Dr. Erin Nance and Anna O'Brien investigate the diagnostic odyssey of Claire and Suzanne, who suffered nearly identical, life-disrupting symptoms from rare neuroendocrine tumors, yet faced years of misdiagnosis, dismissive doctors, and even brush-offs attributed to “twin psychology.” Their story spotlights the power of persistence, the depth of sisterly support, and raises pointed questions about bias and gaps in current diagnostic practice.

Key Discussion Points & Insights

1. Twintuition: Symptom Similarities in Identical Twins

[02:17–03:29]

• From childhood on, Claire & Suzanne experienced nearly identical health trajectories—same diseases, similar timing, including ovarian cysts and tonsillectomies.
• Both began having significant gastrointestinal (GI) symptoms in their 30s, transitioning from typical bowel habits to severe, persistent diarrhea.
  • Claire: "I was having at least four or five episodes [of diarrhea] a day."
  • Suzanne: “Sometimes six or seven bowel movements of diarrhea a day. It was just…so the opposite of the way I had always been.”

Notable Moment [04:33]:
Suzanne recounts an episode in a movie theater where she couldn’t control her bowels—vivid, humiliating, and increasingly disruptive to daily life.

2. Descent Into Medical Mystery & Misdiagnosis

[05:00–08:50]

• Multiple hospitalizations, including for partial bowel obstructions; chronic symptoms despite gallbladder removal.
• Recurrent “flushing” episodes — sudden, painful facial redness — confused with perimenopause by doctors.
• Repeatedly diagnosed with IBS (Irritable Bowel Syndrome), perimenopause, or simply told symptoms were “nothing.”
• The twins supported each other emotionally and shared their frustrations, which became a vital lifeline as the medical system failed them.

Notable Quotes:

• Suzanne: “There was always an excuse for the symptoms that we had. And we could vent to each other about that, which was very helpful because it just was so frustrating.” [08:37]
• Erin (host): “You are not the first person we've heard where something that most people would be like, hell, no, I don't want to do that [exploratory surgery], you're like, oh, yeah, okay.” [12:04]

3. Diagnosis—At Last: Carcinoid/Neuroendocrine Tumors

[13:12–19:41]

• After 13 years of symptoms, exploratory surgery reveals multiple neuroendocrine tumors—an extremely rare cause of her problems, present in both twins’ small intestines.
• Suzanne describes her fear, confusion, and anger at the years lost to misdiagnosis, combined with relief at finally “being believed.”
• Both undergo challenging surgeries, with ongoing recoveries, and grapple with the emotional aftermath.

Notable Quotes:

• Suzanne: “When I finally got my diagnosis, I had been struggling for 13 years at that point…If they had diagnosed this a long time ago, would I have had this many tumors?” [15:11]

4. Systemic Failures: Medical Charting & Bias

[24:41–25:04; 48:19–51:51]

• Claire’s chart includes a physician’s dismissive note: “She’s an identical twin and thinks she always has to have what her twin sister has.”
• Both twins detail being dismissed as anxious, suggestible, or dramatic due to their twin status—despite their longstanding, undeniably physical symptoms.

Notable Exchange:

• Claire: “One of the GI doctors…actually wrote in my chart, ‘she thinks she always has what her twin sister has.’” [24:41]
• Aaron (host): “That was documentation planting the seeds that I think there’s a psychiatric component…when you write it in the chart, you have to expect to read it in front of a judge.” [48:19]

5. The Diagnostic Rabbit Hole—Testing, False Negatives, & Unanswered Questions

[21:20–32:58]

• Multiple standard tests (CT scans, colonoscopies, bloodwork, urine) failed to show the tumors for years.
• Both sisters ultimately require advanced nuclear imaging (gallium scan) and exploratory surgery for diagnosis.
• Blood and urine markers (serotonin levels, chromogranin A) often negative, reflecting how easily neuroendocrine tumors evade classic screening.

Notable Quote:

• Claire: “By the time I had my surgery and received my diagnosis, I had been having symptoms for 19 years…even though I didn’t really have any proof that it was correct…it made me feel better about myself that I had pushed so hard…” [32:58]

6. Rare Disease, Health Disparities, and the ‘IBS’ Trap

[41:05–42:27]

• Carcinoid/neuroendocrine tumors are extremely rare (<1% of bowel tumors); mistaken for far more common IBS.
• Discussion of healthcare resource allocation—should we scan every patient with chronic diarrhea? The cost/benefit challenge.
• Host points out: “IBS” often serves as a catch-all when “you have not found the problem yet.”

Notable Moment:

• Aaron (host): “How many women in this country have been diagnosed with IBS who have diarrhea issues? ...It is not IBS. It is, you have not found the problem yet.” [41:18]
• Suzanne: “…at a minimum, [doctors] could start with testing the serotonin levels, doing the chromogranin A test…then that’s an indicator that the scan is necessary…” [43:18]

7. The Twin Bond and Emotional Resilience

[45:31–47:08]

• The “twintuition” phenomenon (not psychic pain, but instinctual knowing something is wrong).
• Underscored the vital role of patient self-advocacy and the importance of shared support—even in close marriages, the sisterly twin connection was irreplaceable.

Notable Quote:

• Suzanne: “We get this nagging feeling, like, I’ll get this nagging feeling sometimes…and I’d pick up the phone and call her and something was wrong…There is that connection like you say, about being each other’s North Star…” [45:31]

Memorable Quotes

• Suzanne [04:49]: “I would have to go out on the [tennis] court and say to the ladies ahead of time...‘I may have to leave the court, like, on an emergency, right in the middle of a point…because this is my life right now.’”
• Claire [24:41]: “He actually wrote in my chart, ‘she’s an identical twin and she thinks she always has to have what her twin sister has.’”
• Aaron (host) [41:18]: “It is not IBS. It is, ‘you have not found the problem yet.’”
• Erin (host) [47:08]: “Keeping my twin dreams alive! ...It is so fulfilling and so validating to know that the twin reality is real.”

Important Timestamps

• 02:17: Introduction to twins and parallel medical histories
• 04:33: Humiliating public symptom stories
• 07:00: Host explains bowel obstructions and possible causes
• 13:12: Exploratory surgery reveals neuroendocrine tumors
• 21:20: Claire’s quest for diagnosis, repeated medical dismissal
• 24:41: Dismissive chart note by doctor
• 32:39: Explanation of neuroendocrine tumors & their unique symptoms
• 41:11: Resource challenges: screening every chronic diarrhea patient?
• 45:31: The importance of the twin bond for survival and validation
• 48:19: Discussion of harmful medical charting and the power of notes
• 51:51: Charting as legal and medical record; ethical responsibilities

Takeaways & Lessons

• Rare diseases may masquerade as common ones and evade standard testing for years.
  Persistent, unexplained symptoms—especially ones that change a person’s baseline—deserve ongoing scrutiny.

• Medical charting is not just “notes”—it is communication, and can plant bias or shape the course of diagnostic work-up.
  Dismissive or opinion-based entries can harm care and derail necessary intervention.

• Identical twins provide a special, underappreciated lens on medical genetics, risk stratification, and the importance of tracking symptom inheritance patterns.

• Patient perseverance can be life-saving, but shouldn't be a last resort.
  Institutional gaps—especially around rare diseases, gendered symptoms, and “IBS fatigue”—can and should be addressed.

Final Reflections

The episode balances thoughtful medical investigation, frank humor, and advocacy. Claire and Suzanne’s story urges clinicians to listen more deeply, challenge their assumptions, and always look for the real story behind a “mystery” diagnosis. Their sisterly support—twintuition—was as crucial to their survival as any medical intervention.

“Shit happens. We're just going to have to deal with it…because this is it now.” – Suzanne Montgomery [44:25]

Hosts’ Closing Message:
“If you are one of those listeners who’s like, ‘I should write in and tell my story,’ please do.” [54:50]

Resources for Listeners

• If you have a mysterious or rare diagnosis: Advocate for yourself. Consider family history—especially among twins or siblings.
• Doctors & care teams: Be mindful of biases in notes. Honor family patterns; rare doesn’t mean impossible.

(Podcast produced by Soft Skills Media. For story submissions: stories@themedicaldetectivespodcast.com)