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For years, doctors told this pediatrician her pain was fibromyalgia and depression. It was quietly starving her aorta. Victoria Rundus is a board-certified pediatrician who spent four years being misdiagnosed before an ER physician finally listened to her abdomen and heard what everyone else had missed. This episode is based on her article “Diagnostic bias almost cost me my life,” published on KevinMD. You will hear how a single label can close the door on everything else, both for the physician treating you and for the patient who starts writing off new symptoms as just the old diagnosis. She explains why the physical exam still matters when labs come back normal, why she felt she was not being heard, and why curiosity and humility belong next to medical knowledge, not beneath it. We usually see horses, but the zebras are real. Press play to hear how a diagnosis can close a door that should stay open, and what it takes to keep looking.
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Transcript
Kevin Pho: Hi, and welcome to the show. Subscribe at kevinmd.com/podcast. Today, we welcome Victoria Rundus. She’s a pediatrician, and today’s KevinMD article is “Diagnostic bias almost cost me my life.” Tory, welcome to the show.
Victoria Rundus: Thank you so much for having me. I appreciate the opportunity.
Kevin Pho: All right, so let’s start by briefly sharing your story, and I know in this case, your story is your KevinMD article. So tell us about that for those who didn’t get a chance to read it.
Victoria Rundus: I’m a pediatrician in middle Tennessee, and about four years ago I started developing a myriad of symptoms that were later diagnosed as ankylosing spondylitis and Takayasu’s arteritis. But initially, as with other patients I know with autoimmune illnesses, I was diagnosed with fibromyalgia and depression.
As I became involved with support groups for both of these illnesses, I noticed that this was a common theme. Many patients were initially diagnosed with fibromyalgia and then, after they developed complications, received their later diagnosis.
Kevin Pho: So tell us what kind of symptoms you started to have. This was back in what looks like the summer of 2023. Tell us exactly what you were feeling.
Victoria Rundus: Before that, actually. My symptoms started in late 2021, and it was some back pain, neck pain, and stiffness. Then it continued to progress to general malaise, tachycardia, dizziness, this burning sensation in my back, and random abdominal pain.
I was under the care initially of an orthopedist and later a rheumatologist, and ultimately I ended up having this abdominal pain that was very colicky. I had been to an ER in Vancouver a couple of months before and was diagnosed with a kidney stone, and I got better for a month or two. Then I ended up in the ER again with abdominal pain, and the ER physician, whom I will love to this day for actually listening not only to me but auscultating and listening to my abdomen, discovered a bruit.
She sent me to Vanderbilt, where I was later diagnosed with Takayasu’s. After I had originally been diagnosed with ankylosing spondylitis, it was found that my descending aorta, which normally is about 2 centimeters, was down to 4 millimeters, and I went on to get treatment for that.
Kevin Pho: So it sounds like you had been having these symptoms for years, going to multiple specialists and multiple emergency department visits. You were given the label of fibromyalgia until you had that doctor auscultate your abdomen and send you, of course, for further tests, which ultimately diagnosed the Takayasu arteritis and the ankylosing spondylitis. Does that encapsulate your experience?
Victoria Rundus: Yes. And I had been on biologics for the ankylosing spondylitis before I developed the Takayasu’s. The oddest thing that I kept having was that I would go from sitting to a standing position and I would get this hot iron sensation on my back. It just felt like it was burning. No one has still been able to tell me why that was happening. I even contacted someone at the NIH who is an expert, and they said that was a unique complaint. So I’m sure it has something to do with my circulation, but that has never quite gone away.
Kevin Pho: Now, for those who aren’t familiar with Takayasu’s arteritis, just give us perhaps a 30-second synopsis, just to get everyone on the same page.
Victoria Rundus: It’s an autoimmune inflammatory condition of the large vessels, and I learned in medical school that it was usually Asian women in their 20s and 30s, and I didn’t fit either demographic. It can affect the subclavian, the aorta, any of the large blood vessels, and cause a variety of symptoms such as aneurysms, and it can later lead to strokes and heart attacks.
Kevin Pho: So during this time before your diagnosis, you went to see multiple specialists, and I’m going to assume they ordered multiple tests. Did any of those tests point to this potential diagnosis? What was the diagnostic journey like during this time?
Victoria Rundus: Well, as I mentioned, initially it was the fibromyalgia. Later, I was believed to have non-radiographic axial spondyloarthritis, and then later ankylosing spondylitis. But all the symptoms didn’t fit. So initially I was diagnosed with that, started on biologics, and then later diagnosed with the Takayasu’s. It was a very long process, and I think one of the delays was because I was given this label of fibromyalgia, which I didn’t really accept, and the ankylosing spondylitis seemed to capture some of the symptoms, but not all of them.
I had a parent one time who has three different autoimmune illnesses, and she said that autoimmune illnesses are like Pokémon. You have to catch them all. So when you have one, I think you can’t exclude the diagnosis of another.
Kevin Pho: Now, during this time, just tell us some of the frustration that you were dealing with. Tell us what was going through your mind before the diagnosis was pinned down during those years.
Victoria Rundus: The main thing that frustrated me was being given the diagnosis of fibromyalgia and depression, because I remembered a resident from my time in medical school who said, “This is usually what we label 40-year-old white women with depression. Give them a diagnosis. It gives them something to hang their hat on, and they’ll go away.”
I remember that conversation, so I had a bias toward fibromyalgia, and when I heard that diagnosis for myself, I thought, “That’s not what it is.” And I thought, “I’m not being listened to. I’m not being heard.” And I thought, “They think I’m crazy.” That was a really hard thing for me to accept, not only as a patient, but as a physician. I felt like I wasn’t heard and I wasn’t believed.
And with the depression diagnosis, I really honestly wasn’t clinically depressed, but I don’t blame patients who are. When you’re dealing with chronic pain and you’re miserable and you have limited mobility, how could you not have some depression with it as well?
Kevin Pho: So that label of being diagnosed with fibromyalgia is almost like a stigmatizing label, right? And I think you wrote in your article that fibromyalgia was like a Clydesdale horse trampling every zebra in its path. So that metaphor, it sounded like it clearly biased some of the diagnoses and biased some of the approaches that those physicians took when they just saw that on your chart.
Victoria Rundus: Yes, and I think that clouded their judgment when they saw me, and maybe they wrote me off. And I do want to make it clear that fibromyalgia is a real condition, and those patients deserve good medical care. But when that diagnosis is made, I feel that it sometimes closes the door to everything else. And even for the patient, they then, I believe, start discounting other symptoms they get as just, “Oh, well, it must be the fibro.” That’s what a lot of them call it. “Oh, it’s just my fibro acting up.” So they might not even bring up other symptoms they’re having to their physician, because they think it’s the fibromyalgia.
So I think that is the harm. When that door is closed and a patient’s condition evolves, we need to keep that curiosity that there could be something else going on.
Kevin Pho: And to be clear, that dismissal happened more than once. It happened several times, in several venues, with several physicians, correct?
Victoria Rundus: Yes.
Kevin Pho: When you tell your story in these social media patient support groups, just tell us what those conversations are like in there.
Victoria Rundus: I actually don’t typically mention that I’m a physician. But often, when they are diagnosed and they say, “Oh, I was diagnosed with fibromyalgia, and then several years or a decade or more later, I ended up in kidney failure,” secondary to their Takayasu’s, or, “I had a stroke, and then I was diagnosed,” then I mention to them that perhaps it was Takayasu’s all along, and I let them know it’s an incredibly rare illness. I have never seen a patient with it, and it can affect pediatric patients as well.
So I do get mad when I see it. The day that I wrote that article, something set me off. I think it was a patient who had recently been diagnosed and was told it was fibromyalgia, and I was upset for them, and I took that anger that I had and wrote the article at the time, because I just see it over and over and over again.
And it’s not that there are bad physicians out there. We are all victims of this diagnostic bias. I know I am as well, and I even think that I personally have a bias toward my diagnostic bias. It’s like, “Oh, I wouldn’t do that. I’m better than that. I’m a better physician than that,” right? But I think even we may be biased against our diagnostic bias.
Kevin Pho: Now, if you were to replay this whole experience again, in an ideal scenario, what would you have liked to see happen?
Victoria Rundus: I would have liked to have felt that I was being listened to, and not just listening to my story and listening to my symptoms, but the physical exam. I wonder how long I had the bruit and no one had listened. And I’m not putting all physicians in this circle, but I’ve been surprised over the years by how physicians have been losing their ability to use a stethoscope, and maybe feel it’s not helpful or necessary.
And can I say someone’s name, a doctor that I want to praise? Is that OK to say?
Kevin Pho: Of course, yes.
Victoria Rundus: And where she works? So I want to give my thanks to Dr. Michelle Walther, who is at Highpoint Health in Gallatin, Tennessee. She was the one who actually listened to my abdomen, and she was the first physician who did that in those four years. And she heard that bruit, and she told me, and I was shocked. And I will forever be grateful for her doing that, and I appreciate the time she took to not only listen to what I was saying, but also literally listen to me.
Kevin Pho: And typically, how is Takayasu’s arteritis diagnosed?
Victoria Rundus: Labs are not typically helpful. When I was diagnosed, my CRP and sed rate were actually normal. As far as I know, there’s no genetic testing available. So it’s usually a CT scan that can find it and see the aortitis, or a PET scan, or a CT angiogram. That is usually how it is diagnosed. But the symptoms can be extremely varied. I have a friend who lives in East Tennessee, and her symptoms started with an ocular stroke. So you just have to really keep an open mind to the symptoms that others are having.
Claudication is a common way that it presents as well, and I didn’t know I was having claudication. Because of the ankylosing spondylitis I couldn’t walk very far, so I didn’t know that was one of my symptoms until I had the diagnosis. I started walking, I tried walking more, and I would get claudication. But I wasn’t aware of it at the time because of the other autoimmune illness.
Kevin Pho: And how are you doing today, Tory?
Victoria Rundus: I’m currently out on medical leave. I use a cane now to walk, and it’s more because of the ankylosing spondylitis, since I have migratory enthesitis. So depending on the day, I’ll have different tendons and ligaments that flare. I use a wheelchair for long distances, getting pushed around the airport if I need to. The Takayasu’s has calmed down, I think, with the biologics. The angioplasty that I had done was successful and was able to open my descending aorta up to about 12 to 14 millimeters. It had gotten as small as 2 millimeters at one point. So from that aspect, that’s helped, but it’s an ongoing process.
Kevin Pho: We’re talking to Victoria Rundus. She’s a pediatrician, and today’s KevinMD article is “Diagnostic bias almost cost me my life.” Tory, what are some lessons, and you’ve mentioned this earlier, but what are some lessons that you could share with other clinicians who may be listening to your story today? And then maybe we could end off with some take-home messages to my audience.
Victoria Rundus: Sure. The main message that I want clinicians to learn from this is that the medical knowledge we learned over the years and all our studies are very helpful in being able to diagnose patients, but we also have to keep curiosity and humility there as well, and those are equal to our medical knowledge. And we need to make sure that when we arrive at a diagnosis, it doesn’t close the door, that we keep it open to evolving patient symptoms, and that although we usually do see horses, we have to always keep an open mind to those zebras and constantly reassess.
So during this time of limited mobility and being unable to do things, it did close one door, but it opened a door to me. I started doing some fiction writing and wrote a book entitled “Ava” under my pen name Victoria Dillon, and it explores the intersections of politics and science. It follows a young woman in her pregnancy when she becomes pregnant with a child with a lethal anomaly, and carries it to term, and how that affects her future decision for a second child. It’s a work of speculative fiction, and I hope that it opens some minds and also creates some conversation about our current legislation that we have in Tennessee and throughout other states.
Kevin Pho: Tory, thank you so much for sharing your story, time, and insight. Thanks again for coming on the show.
Victoria Rundus: Thank you so much. I appreciate your time.
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