Jennifer's Story: The Symptom That Saved Her

Summary

Summary of "Jennifer's Story: The Symptom That Saved Her"
The Medical Detectives
Release Date: March 12, 2025

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Introduction

In the episode titled "Jennifer's Story: The Symptom That Saved Her," hosts Dr. Erin Nance and Anna O’Brien delve into the harrowing yet inspiring medical journey of Jennifer, a dedicated mother and professional whose unexplained symptoms eventually led to a life-saving diagnosis. This detailed account highlights the critical importance of patient advocacy, the challenges of navigating the healthcare system, and the profound impact of having a supportive medical team.

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Initial Symptoms and Emergency Visits

Jennifer's ordeal began with unexpected and severe symptoms that disrupted her normal life.

• Rapid Heartbeat: Jennifer experienced sudden episodes of rapid heart rate, reaching up to 160 beats per minute while at her desk, an unusual occurrence for someone who described herself as not particularly active (02:18).

  Jennifer: "I ended up going... 'hi, would you mind checking my blood pressure?'... he said, 'you just got a ride to the hospital.'"

Despite her initial fear, Jennifer's resourcefulness led her to seek immediate medical attention by contacting a local EMT, resulting in her first ER visit. However, the initial emergency room visit yielded no abnormalities, and she was sent home without further consultation with a cardiologist (03:22).

Progression of Symptoms and Misdiagnoses

Jennifer's symptoms escalated over the following months, introducing a range of neurological issues:

• Tingling and Numbness: She began experiencing tingling in her limbs and eventually severe numbness, making daily activities increasingly difficult (04:00).

  Anna: "Sometimes we're conditioned to just be like, until my limb is literally falling off, I will persist."

• Vision Loss: Her eyesight deteriorated progressively, compelling her to abandon her glasses and rely on holding books close to her face (04:30).

Multiple ER visits and consultations with her general practitioner resulted in prescriptions for blood pressure medication and brief diagnoses, often attributing her symptoms to stress or psychological factors.

Jennifer: "He just thought nothing was wrong. And either I was trying to scam the system or get drugs or get disability."

This lack of diagnosis led to profound emotional distress, including feelings of isolation and anger toward the medical professionals who failed to recognize the severity of her condition (11:22).

Emotional and Personal Impact

As Jennifer's health declined, becoming bedridden and reliant on her mother for care, the emotional toll became evident.

Jennifer: "It was scary like, what is happening? I don't understand what's happening."

Her personal life also suffered, leading to a divorce and strained relationships with her children, who witnessed her deteriorating health (19:32). Despite these challenges, Jennifer maintained a semblance of positivity, though the constant frustration and lack of answers weighed heavily on her.

Seeking a Second Opinion

Determined to find answers, Jennifer sought a second opinion from a neurologist in a different city. This neurologist conducted comprehensive tests, including MRIs and nerve studies, but initially found nothing conclusive.

Jennifer: "They said nothing was wrong. There's nothing else we can do for you."

This response only deepened her despair, pushing her to continue searching for a diagnosis (15:56).

Breakthrough Diagnosis at MUSC

Jennifer's persistence paid off when her GP referred her to a neurologist at the Medical University of South Carolina (MUSC). Unlike her previous experiences, this neurologist was empathetic and committed to uncovering the root cause of her symptoms.

• Chronic Inflammatory Demyelinating Polyneuropathy (CIDP): The neurologist initially suspected CIDP, a condition affecting the myelin sheath of nerves, and recommended an intravenous immunoglobulin (IVIG) treatment (24:36).

• Discovery of Breast Cancer: Further testing, including a PET scan, revealed that Jennifer had breast cancer. This led to a diagnosis of a paraneoplastic syndrome, where the immune system's fight against cancer inadvertently attacked her nervous system (30:00).

  Jennifer: "When she approached me with it, she said... it's very rare, but essentially my immune system... was attacking my nervous system instead of attacking the cancer."

This pivotal diagnosis not only identified the underlying cause of her symptoms but also provided a targeted path for treatment.

Treatment and Recovery

With a confirmed diagnosis, Jennifer underwent a series of treatments:

• Surgical Intervention: She had a lumpectomy to remove the cancerous tissue from her breast, along with lymph node removal (34:29).

• Chemotherapy: Jennifer embarked on a rigorous chemotherapy regimen, attending treatments three times a week, which involved significant travel and time commitment (35:58).

• Support System: Throughout her treatment, Jennifer emphasized the crucial role of her support system, including her mother, friends, and community members who organized meal trains and other forms of assistance (37:34).

Reflections and Lessons Learned

Jennifer's journey underscores several vital lessons in healthcare:

• Importance of Advocacy: Persisting in seeking medical opinions can lead to life-saving diagnoses, even when initial consultations fall short.

  Anna: "If you find that one doctor that cares about you as a human... to treat an illness."

• Effective Communication: Transparent communication between patients and healthcare providers is essential to avoid misunderstandings and ensure accurate diagnoses.

  Dr. Nance: "The most egregious part of this whole story... that the test wasn't readable."

• Hope and Resilience: Maintaining hope and a positive outlook, even in the face of adversity, can significantly impact one's ability to navigate complex medical challenges.

  Jennifer: "I kind of felt like cancer almost saved my life."

Conclusion

Jennifer's story is a testament to the resilience of the human spirit and the critical need for compassionate, thorough medical care. Her experience highlights the gaps that can exist within the healthcare system and the profound difference a dedicated physician can make. By sharing her journey, Jennifer aims to inspire others to advocate for their health, seek second opinions when necessary, and never lose hope in the face of medical uncertainty.

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Notable Quotes:

• Jennifer (02:21): "I just could be sitting at my desk, and all of a sudden, I'm running a heartbeat of 140, 160..."
• Anna (05:53): "This is like the hustle culture, right. Which I think sometimes causes us to put our health on the back seat."
• Jennifer (15:42): "They said nothing was wrong. There's nothing else we can do for you."
• Anna (22:25): "Third neurologist."
• Dr. Nance (24:36): "A demyelinating process is when that nerve is stripped of that protective covering."
• Dr. Nance (43:35): "No doctor is intentionally recommending a treatment that they think could hurt you."
• Jennifer (34:32): "Now, I have a diagnosis, an enemy, somebody that we can fight."

Key Takeaways:

• Stay Persistent: Don't hesitate to seek multiple opinions if your symptoms aren't being adequately addressed.
• Communicate Clearly: Ensure that your healthcare providers fully understand your symptoms and concerns.
• Leverage Support Systems: Surround yourself with a strong support network to assist you through medical challenges.
• Advocate for Yourself: Trust your instincts and push for the care you need, even when facing obstacles within the healthcare system.

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Jennifer's story not only sheds light on a rare medical condition but also emphasizes the power of perseverance and the importance of compassionate healthcare providers in guiding patients through their most challenging times.

Transcript

[Anna]

Foreign. Hello.

[Dr. Nance]

Hello.

[Anna]

Hello.

[Jennifer]

We're back.

[Dr. Nance]

Hi, Anna. How are you?

[Anna]

I'm good. How are you doing?

[Dr. Nance]

I'm good. I, you know, this past interview learned about another condition that I really had never come across before, which is kind of scaring me. You know, that as a. As a practicing physician for 20 years, I am still hearing about new. New conditions.

[Anna]

Well, if anything, it just gives importance to what we're doing, right? People coming on and telling their stories. Patients having voices is a great way to educate people in the medical community as well as educating patients on how to advocate for themselves. I really enjoyed this story because I felt like it really personified that idea of, like, second opinions, or in this case, third opinions and how important they are on your medical journey. And again, that patient advocate we talk about all the time really is important.

[Dr. Nance]

Well, let's get to it.

[Anna]

Let's jump on in.

[Dr. Nance]

Hi, Jennifer. Thank you so much for joining us.

[Jennifer]

Hi, Dr. Nance. How are you? Hey, Anna. I'm so excited to talk with you today.

[Anna]

We are so excited to have you.

[Dr. Nance]

Well, Jennifer, could you bring us back to, let's say, a week before you first started having your first symptom? What was life like for you?

[Jennifer]

Life was being a mom and going to work and just doing life, doing the things I do.

[Dr. Nance]

What happened? That was a bomb dropped in this normal life.

[Jennifer]

Well, it started. I started having some really rapid heartbeat. Now, whether or not that's related to the end diagnosis, I'm not completely sure of. But I just could be sitting at my desk, and all of a sudden, I'm running a heartbeat of 140, 160, and I'm not an active person, so that was unusual.

[Dr. Nance]

How did you realize you were having a heart rate of 140?

[Jennifer]

Well, the actual specific time I went to it was lunch break at work. And so I'd gone to lunch, and it had started during lunch. I said, well, I'm gonna go to the local CVS and run my arm in the blood pressure thing and see what it is. And it was crazy high. I live in a very small town, and so I was like, well, I'm gonna go to my physician. Their office was closed for lunch as well, and every physician in the area was also closed. So I ended up going. We have a nursing home in our town. That's where our emt, our ambulance service is run from. And I stopped in there and found an emt, and I was like, hi, would you mind checking my blood pressure? And he checked it, and he said, well, you just got A ride to the hospital. So my heart rate was extremely high. And so he loaded me up and, you know, of course I was like, wait, wait, wait, no, we can't do that. I have to go back to work. He was like, no, you're going to the hospital. So that was the first of many ER visits during the course of this whole situation.

[Anna]

So you are super resourceful. I would have never thought I'm just gonna roll up in a nursing home and someone will take care of this.

[Jennifer]

We just gotta do what you gotta do. Yeah.

[Dr. Nance]

So the EMT is obviously very concerned about you, enough to bring you straight to the error. What happened in the er?

[Jennifer]

Well, I was admitted to the er. They ended up that particular day. They ran tests, but didn't see anything abnormal. Even then, I didn't get a consult for a cardiologist appointment. They just sent me on my way once everything was kind of back in order. And so fast forward, I'm having those issues as well. I'm still continuing to have that. I did see my general practitioner and was put on blood pressure medication at that point. But then I started getting a strange tingling in my limbs, in my arms and my hands and my feet, in my legs. And eventually it did. It was in my kind of the trunk of my. My body as well. But it was just kind of weird, and I really didn't think much of it. I had recently gone through a breakup, and so I was drinking a little bit more than, you know, I had been in the past. And so I really chalked it up to that. I just thought that maybe that was my problem. I just need to cut that out, slow down. And it didn't get any better. It intensified and my eyesight started getting worse. I already have corrupted vision, but it was getting progressively worse. I noticed I really couldn't use my glasses. I couldn't make things out. I would have to hold books right up to my face. I couldn't see far distances. It just was progressively worse. And again, I was lifing, so I really didn't put a lot of effort into finding out the cause of all of this.

[Dr. Nance]

And these symptoms, they were just kind of in the background pretty much at that point.

[Jennifer]

They were, you know, is like, oh, that's weird. And just go about your day. I think as humans, we're all busy and we're doing things, and so we try very hard to just keep going. And we don't really take the time to look into these things.

[Anna]

But ain't that the truth? I honestly think sometimes we're conditioned to just be like, until my limb is literally falling off, I will persist. Which I think so. I think that's a very American culture kind of thing. This like the hustle culture, right. Which I think sometimes causes us to put our health on the back seat. So it makes complete sense.

[Jennifer]

Well, that's it. Like you know, going to the ambulance, you can't take me, I have to go back to work, you know. Well, they're going to be fine.

[Anna]

Exactly. They can totally make it a valley, those TPS reports.

[Jennifer]

But as the summer progressed and in the fall, I noticed it getting worse and then there was a numbness in my legs. It was, I just described it as heavy legs. It was hard to walk. And I remember going to a convenience store and trying to go in and trying to step up onto the step to go in and I fell, managed to get myself up, got back home and that became a pretty common part of my life at that point going, you know, those next few months I would fall all the time. I would try to get up from my chair and it was like my legs just gave out and I could not understand what was going on. And then it just progressively got worse. Luckily it didn't happen anymore and public, but it did happen where we had to call people. Actually one time my mom did have to call the ambulance to come and pick me up in our yard because she couldn't get me up. And at this point, obviously I know something is wrong. It was just the intense tingling and it was almost painful on the bottom of my feet with the neuropathy. And I remember my parents were out of town and I called my mom and she's like, I think that you should go to the urgent care and just get checked out. And so I did. And that's kind of where the odyssey began really. I was sitting there on the examination table and this is a little rural urgent care. And I remember looking out this little window up in the wall. I just sat there and I thought with the heart issues and the intense neuropathy and tingling, I just felt like my life was changing. And I didn't know how, I didn't know what it was, but this was going to be a life altering event. And I thought my life is going to change somehow, some way today. So the urgent care referred me to have an MRI and nothing really came of those results. And that fall it progressively got worse. And so I did go to my GP and she gave me a referral to a neurologist. After I saw him, he did Do a nerve study, essentially pricking me with needles in my legs, which I couldn't feel very much. But he didn't seem to think that there was anything particularly wrong with me. He.

[Dr. Nance]

When. When you say you couldn't feel the needles, was that another symptom, the numbness in my calves?

[Jennifer]

Yeah.

[Anna]

So you could absolutely no feeling in your calves.

[Jennifer]

Certain areas. Now at that particular point, it was kind of hit or miss. And there were certain areas that I could feel it and certain areas that I couldn't. But he did test with my balance and could I stand on one foot. But there really wasn't a lot of conversation with him. You know, I'm telling him what I'm feeling, what's been happening. And he was just very dismissive at that point. I was, I was using a walker to get around. Oh, wow. And I don't think I was in a wheelchair that first appointment. But eventually I became pretty much bedridden. Starting in the summer, I had the neuropathy and I was wheelchair bound by December, you know, we had the whole toilet in my bedroom, the little hospital mobile toilet. And I had a chair in the bathroom, in the shower. I couldn't walk, I couldn't hold a pen, I couldn't hold an eating utensil. I used to love to read. And with the vision, I ended up just listening to audiobooks because I couldn't focus on the page. And I got a bunch of those, really, the large print books went on an Amazon buying frenzy of large print books. But he determined that there was nothing wrong with me, that I was stressed out and that I needed to just get counseling. Actually, my mom reminded me that he told me that I needed to just see a psychologist. And speaking of that, my mother was pretty much my sole caretaker at this point because obviously I'm needing assistance. And she was also dealing with my dad, who had injured himself. So she was splitting time between me and my father trying to make sure that we had what we needed and we were taken care of and all of those things. And we asked for a referral for home health to come in. There are agencies that can come in and help bathe you and they can clean or cook food, help you eat, just help you around the house and do things just in your daily life. And when she asked that particular neurologist for a referral for home health, he declined to give that to her. He said that we didn't need it and I just left a bad taste in her mouth. It was just a feeling that he had very Little empathy for my plight. He just didn't seem that interested. We went back home and we're like, you know, wtf? What's. What's going on?

[Dr. Nance]

But going back, you're a working mother, firing on all cylinders, working full time, taking care of your own family, and within a span of a few months, you are bedridden, and no one thinks anything is wrong. She's just sad.

[Jennifer]

I'm just.

[Anna]

She's lost all of her mobility because she's stressed out and sad. I do not want to villainize doctors because there are amazing doctors out there, but when I hear stuff like that, I literally want to go punch a wall. How could anyone think. And Erin, please educate me if I am missing something here that someone would become bedridden. And how many months was this, Jennifer?

[Jennifer]

It was essentially four to six months since the onset of the. That first ambulance ride in six months.

[Anna]

How. How is that. Is that a thing that happens? Like, why. Why is that the first thing that always. It seems to get jumped to?

[Jennifer]

That's.

[Dr. Nance]

And at this point, you. You have had multiple tests, so you've had an mri, you've had an EMG nerve conduction study, and those sounds like are primarily normal. Did your doctors feel like they just didn't know what was going on or they thought that there was no problem going on?

[Jennifer]

That's a hard question for me to answer for them. The way I felt when I left that doctor's office that day, I felt like he just thought nothing was wrong. And either I was trying to scan the system or get drugs or get disability. I don't know what he thought was the problem, but he was an older male doctor, and I'm convinced that I didn't fit into his cookie cutter. And you discussed this before as well? Based on what his experiences were and what he had studied, I didn't fit anything that he had seen before. And rather than taking the time to get and think outside of the box or do the research, he just kind of wrote me off.

[Anna]

It's like, if he doesn't know the condition, then the condition doesn't exist. In cases like this, I'm always like, how did this go to mental health? I mean, how did that feel for you? Did you feel sad? Did you feel stressed? Did you. Oh, I feel like this might be a reasonable answer.

[Jennifer]

Well, I mean, you're starting to question, well, is there really anything wrong with me? Did I make this up? And is it something in my brain that. Anyway, so there's. You do start to question, you know, you just. You start to question your own sanity and. Is this something that I have made up? If they're not finding something or they don't think they can find something, then, you know, is this just all in my head? Have I created this in some way? You have just a gamut of emotions. I felt totally isolated, and then. And then there's anger, you know, I know there's something fucking wrong with me. Why aren't you trying harder? I tried to be as positive as I could, but it was scary. I guess that was the biggest thing. It was just. It was scary like, what is happening? I don't understand what's happening. And I'm on Google and I'm looking up all my symptoms, and so then I've got this list. And so I went back to my GP and shared that wonderful story with her, and we decided that a second opinion might be in order. And so she then referred me to a second neurologist in a different city, had me do an mri. And evidently, I was twitching during the mri. And I do remember the MRI technician saying, I need you to be still. I need you to be still. I was trying to be still and thought I was being still, but evidently not still enough.

[Dr. Nance]

And for anyone who's had an mri, they can sympathize with you because it's a long time and they tell you to be still, and it's hard.

[Jennifer]

Yeah. Those results, I never got a call from that neurologist. And when I called him, because I had not heard from anybody any results or anything from that mri, I talked to his nurse, and she said, everything came out fine on your mri and there's nothing else we can do for you. And I was like, okay. I never even spoke with him. I just heard from his nurse, and that was her relaying his message to me. So that was. That was another blow. You know? Why can't they find something wrong?

[Anna]

Not great.

[Jennifer]

So.

[Dr. Nance]

So it sounds like you had an MRI that was compromised because you were moving, and instead of repeating the mri, they just said nothing was wrong.

[Jennifer]

They said nothing was wrong. There's nothing else we can do for you. I will never forget that conversation with that nurse. It was. Yeah.

[Dr. Nance]

So then where do you go from there?

[Jennifer]

Well, I went back to my GP and spoke with her. My gp. Her name's Kiana. And she was just phenomenal. She always took the time to see me. Whenever I would call, I would go back to her with these reports from doctors who really didn't have much to say. And she's like, well, we'll, we'll pick another one, we'll do another one. We did more blood work. I was tested for Lyme disease, multiple sclerosis, lead poisoning, you name it. Tons of different blood tests.

[Dr. Nance]

So it sounds like they're trying to cast a wider net by ordering different and, you know, thinking, is this an infection? That's what they're testing for, Lyme disease. You know, with the mri, they're thinking, is there something structural in your anatomy that is causing this? The neurologist is trying to figure out if the nerves are malfunctioning. So it seems like they are trying to build a larger body of evidence to find out what it is.

[Jennifer]

But you keep coming up empty handed, empty handed, nothing.

[Anna]

How did that feel? Every time a test came back, you.

[Jennifer]

Start really getting hopeless and depressed because you're at this point, something's wrong, you know, something is wrong and it feels like every stone that you're turning over, there's just, there's nothing there and nobody can answer your questions. And I tried to stay as upbeat as I could. Obviously I've got kids. I have two sons. My older son was in high school at the time, pretty self sufficient. Then I had a younger son and he ended up having to go and stay with his father. We were divorced soon. Having my son go and stay with his father, it was really hard. That's one of the things that if I'm angry, that's one of the things that I'm angry about. Just because I felt like there was such a. That was such an impactful time in his life that I just wasn't able to be as present as I wanted to be. And I still saw him. I mean, my mom would pick him up from school and he'd come by and hang out for a couple hours, do his homework, get a snack and then he would go. But I just feel like I missed out. And my son and I are close, but he saw me in a lot of situations that I wish that he wouldn't have. For example, one. One day I tried to, to get out of bed and go to the restroom thinking, I got this, I can do it. Well, I couldn't, couldn't reach my phone and so I laid on the floor until my mom came home with him. And the two of them had to, you know, get me up and get me back in bed. And being a parent, you don't want your children to see you in that state. So I knew it was better for him to be with his dad that could take care of him on a more consistent basis. But it was, it was difficult missing that time. So, you know, I had a lot of support. I had a lot of really good people that were rallying around me, trying to help me and keep me positive. But there does. There's a hopelessness that comes with all of this. And again, questioning yourself, you know, maybe he's right. Maybe it is distress and maybe I do need to go talk to a therapist. That's my problem. That's why I can't walk. Of course, in some of the MRIs, I think they also looked at spinal feels, a pinched nerve, and no results. No results.

[Anna]

We've had a ton of blood work, a ton of stuff done, and no idea.

[Jennifer]

Multiple ER trips. I remember going because primarily I would end up at the ER with the svt. And I remember just begging, just keep me, I don't need to go home, you know, everything's fine there, just keep me. And let's figure out what this is.

[Dr. Nance]

That's how you know you're really sick. That's how you know you're really sick when the people are asking to be admitted. Right, so at this point, what are you thinking is the next step?

[Jennifer]

Well, yeah, we're just kind of waiting around by this time, actually, my mom has. We brought in a caregiver to help her balance her load with me. And we had a local woman who did touch therapy. I can never pronounce it. Kinesiology.

[Anna]

Okay.

[Jennifer]

Which is essentially kinesiologist. Yeah.

[Dr. Nance]

Form of physical therapy.

[Jennifer]

Right. And essentially she came over, she offered her services to me and I was like, bring it on, let's. Let's see what we can do. And it was basically a touch therapy that she did. And I remember the first time she had me get off the table after one of our appointments and I was like, oh, I feel better. But kind of in hindsight, I don't if it did anything, it wasn't anything. It wasn't very effective and it wasn't long lasting. It. It didn't last very long. But I appreciated her reaching out to me and seeing if she could help. So.

[Anna]

Erin always says that the most powerful medicine is hope. And I think if that did work for you, it probably was like you hoping it would work. Not that, not to discredit the whole practice, but I imagine that if it only had a short lived result, it's because you just really wanted it to work.

[Jennifer]

Something's got to work.

[Anna]

Yeah. And I've had results in my own personal medical journey where I thought something has worked, but it's been more that I've wanted it to work so bad that it had a result. But maybe that was just the hope inside of me pushing that result. Does that make sense?

[Jennifer]

Absolutely.

[Anna]

Yeah. So I, I get it. I get why you'd be like, it kind of worked, but not really because it's probably just, you know, the hope.

[Jennifer]

And you have to maintain it. You have to. Even in the darkest hours, you have to believe that there's a light at the end of the journey or at the end of the tunnel there.

[Anna]

Agreed.

[Dr. Nance]

So you're willing to try new things out of the box things, they're just not working. Now. What are you thinking?

[Jennifer]

Well, the next step was my GP refers me to our local medical university, musc, which is in Charleston, South Carolina. And she refers me to a neurologist there who's also female. And so the third neurologist, just anyone keeping track.

[Anna]

Third neurologist.

[Jennifer]

When I got to the third neurologist, I just didn't know what to expect anymore. Is it going to go the same? Is it going to be just a three peat of what I've dealt with before? And it wasn't until we were getting ready to do a nerve study and she had left the room and I'm sitting there on the table and I just start crying. And she comes back in and she's like, oh my gosh, what's wrong? Are you okay? And I said, I just want somebody to help me. Something is obviously wrong. I'm tired of being told that nothing is wrong, but I just want somebody to help me. And she sat down beside me and she said, we're gonna get this figured out. We are gonna leave no stone unturned. We're gonna figure this out. And thank God she did. I had several appointments with her. It's about three hours away from my town. And she redid MRIs and CT scans, she did nerve biopsies, she did the nerve studies, blood work, you name it, and she did it. And initially her findings she thought I had cipd, which is an acronym for Chronic Inflammatory Demyelinating Polyneuropathy. And it's a deteriorating of the covering on your nerves. Is that the best way to describe that?

[Dr. Nance]

So you know how a nerve atomy wise think of it. You have the head of the nerve and then the body of the nerve like the tail. And that tail is wrapped in a insulating material called myelin. And that myelin acts as both like a conductor and a cushion for the signal to go from nerve to nerve. To nerve. To nerve. To nerve. A demyelinating process is when that nerve is stripped of that protective covering. And so it short circuits the whole wiring process. So the message never makes it from nerve to nerve to nerve because the myelin isn't helping the message get through.

[Jennifer]

Well, that was her initial thoughts with cipd. All of the symptoms matched her description of the. It all matched. And so I was like, okay, well that sounds like that could be a winner. And then she brought up the IVIg treatments. So there was an actual treatment. And, you know, if you read up on it, it sounded very much like what I had. And so it was a pretty exciting moment for us, you know, okay, well, now we've got a diagnosis, we've got something that we can fight at this point. And we were going to proceed with an infusion of IVIG treatment, which is a sort of an antibody infusion to try to.

[Dr. Nance]

Yeah. So ivig IG is called an immunoglobulin. And again, these are kind of parts of the proteins in the immune system that help the body take care of itself. So IVIG is an infusion therapy, meaning it's goes in your vein and it distributes these antibodies, these IG antibodies, throughout your body. And that's a very big process. That's a very expensive process. That is a very regulated process. Not just anyone who asks for IVIG can get ivig.

[Jennifer]

And talk about hard to get that. That's another part of the story and part of my frustration when all of this began. I was employed, I did have insurance. Then I was put on short term disability, which that kind of became a hassle. Eventually I was let go from my job, lost the short term disability. Then I'm trying to get disability and also, you know, Medicaid, something to help with all of these. Of course, bills racking up. There's just so much red tape. There's so much information they want and paperwork they want. And my poor mom just. I still have the folders of all of that and it was a good several months to get any of the disability. They don't make it easy. And I understand that there are people that abuse the system, but there are plenty of people that were in my situation that need it. Yeah, so that's another frustrating part of medical care, aside from doctors that don't try. But. So that was frustrating.

[Dr. Nance]

So now you are on your third neurologist. She is concerned that you have a nerve disorder and she would like you to start a pretty invasive therapy. Were you getting excited for this new potential treatment. What were you thinking?

[Jennifer]

I was. It's strange that you could be excited for any. Any diagnosis, but at this point, it's like, okay, well, we've got an answer then. You know, let's get it. Let's get to it. She did come back to me after that initial diagnosis, and she said, before we start this IVIG treatment, I would like for you to have a PET scan. I said, okay, well, at that particular point, I was on Medicaid, I believe they would not pay for a PET scan. So they would pay for scan.

[Dr. Nance]

So what a cancer is. Is unchecked growth of cells that, you know, multiply and divide unregulated. That's how a tumor forms. So a PET scan is looking for areas in your body where you have this abnormal rapid uptake of rapidly dividing cells.

[Jennifer]

So I was not able to do the PET scan first go around, but they did pay for a mammogram and a CT scan. So I went for now what?

[Dr. Nance]

Because this sounds like the first time that we are hearing anyone speak about cancer. Did she express to you why she was concerned about cancer?

[Jennifer]

When she approached me with it, she said, you know, there are some malignancies that present this way. It's very rare, you know, and she kind of blew it. I don't want to say blew it off, but she didn't make me feel anxious about it at all. She was, you know, it's very rare. I don't think that's the problem, but I just want to make sure that we're covering all of our bases. And so that's kind of how she approached the subject with me. Let's do our due diligence. So I did my mammogram. I did my T scan. There was a. I guess a radiologist that was in there, and I asked him because he could see, and I said, you know, do you think it's breast cancer? And he's like, well, I'm not supposed to really say anything. He said, but, you know, my first hunch is, yeah, probably so. And I was like, okay. So when I left the hospital, I. I kind of had this seed planted that, okay, well, it's breast cancer. The next afternoon, I got a phone call from the imaging center liaison, and she said, I'm just calling just to let you know that you do have breast cancer, and we'll be in touch. But honestly, even though I thought we had something else going on and then it was breast cancer, honestly, at that point, I was okay with it. I mean, there's no other way to really be. I guess I was kind of amazed at the fact that she recognized that that could be a possibility. You know, I'm glad that she wasn't so dead set on this CIPD thing that she didn't say, wait a minute, let's just try one more thing. Let's rule this out. And her then diagnosis was that I had a paraneoplastic syndrome associated with the breast cancer. And so then we proceeded with that. She explained that there were some malignancies that could present this way, that it was very rare, but essentially my immune system, in an attempt to fight the cancer, was shooting out these antibodies that were attacking my nervous system instead of attacking the cancer. So it was attacking my, you know, my eye nerves and my leg nerves and my hand nerves and all of those things in an effort to combat.

[Dr. Nance]

Their aim is off.

[Jennifer]

Right?

[Dr. Nance]

But what's very interesting, Jennifer, is that, you know, you had so many different types of symptoms. Right. Ones, that it seems almost impossible to connect the dots. Right? Your vision was going off, you were falling, you were having numbness and tingling in your hands and your feet. To get this diagnosis, I have to tell you, seems like a needle in a haystack figuring this out. The forethought of that doctor to think about cancer. And again, we had talked about this last week about moving beyond symptoms and thinking about systems like cancer as a whole. Category is something that when you don't know what is going on, think about cancer. And the fact that your neurologist ordered those right tests, that's why you got this diagnosis.

[Jennifer]

I love her. She's amazing. She was amazing. And, you know, she made. She. I don't want to say made me a promise, but she said, we will figure this out. And we did. And I will forever be grateful to her.

[Anna]

It's about having that doctor advocate. We say this like a broken record, but if you find that one doctor that cares about you as a human, and I would argue that it was maybe your gp, because your gp absolutely. Having that one doctor that will fight for you and listens to you and believes you is the key, in my opinion, to treating an illness. It doesn't have to be every doctor just has to be one doctor that will show up and fight for you and keep giving you places to look for new answers until you find a solution.

[Dr. Nance]

So now that you have the breast cancer diagnosis, that opens up a whole nother set of. Right. Because once you hear that C word, now we are in, you know, cancer.

[Jennifer]

When I heard the C word. I was like, hell, yes, I have cancer. We've got an enemy. Let's go. Let's do this. You know, it was. I mean, I was excited because it was like, okay, we have an answer.

[Dr. Nance]

You are not our first guest to be ecstatic that they heard that they have cancer.

[Jennifer]

Yeah.

[Dr. Nance]

And for anyone who doesn't understand what having a undiagnosed problem or a misdiagnosis is, to just think about that for a second that you are ecstatic that you have been diagnosed with cancer. That is how stressful a process it is when you are undiagnosed.

[Jennifer]

Absolutely.

[Anna]

Being undiagnosed sucks because you don't know what's wrong with you, but also, you can't treat what's wrong with you if you don't know what it is. And so even though it was cancer, it was the first chance of something being better. And I think that's why diagnosis are so liberating.

[Jennifer]

Liberating.

[Anna]

That's. We might actually be able to treat this, do something with it. Even though it's the C word.

[Jennifer]

Yeah.

[Anna]

Which apparently you were very excited to hear.

[Jennifer]

I was.

[Anna]

I will never forget that.

[Jennifer]

Yeah. Now we have a diagnosis, an enemy, somebody that we can fight. And that's then the mindset that I took on. And of course, I had my little army of people, but, yeah, let's go to war. Had to go to work. Yep. So when I was diagnosed, I was at stage two, and my oncologist and team of doctors were very confident that I would be able to beat this. In some ways, I'm grateful for the paraneoplastic syndrome because it actually did lead to the discovery and diagnosis of the breast cancer, because that was not on anyone's radar because I didn't have the family history at that point. I was 40. So mammograms then it wasn't, you know, that wasn't a big push to have your mammogram. It was 40 or after, you know. And so, yeah, I think essentially the. The symptoms and the illness that I had was able to diagnose what was the real problem to begin with. And got in there and got with a surgeon. We had a lumpectomy on my left breast, had lymph nodes removed from under my arm, and proceeded to do chemo therapy, which I did for about six months until October. And I did that three times a week. And again, I'm going to another. Driving an hour for that. So that was a two hour each each way.

[Anna]

I think it's important to acknowledge that Sometimes taking care of your health is almost like a full time job. Just for everyone who's listening to this, she is driving sometimes multiple times per week. Three hour. Now she's doing chemo. How often do you do chemo?

[Jennifer]

Three times a week.

[Anna]

Yeah. That's another hour away. Lots of times people are like, well, why didn't you do all these things for your health? It's like, because I didn't have the time or I didn't have the money. And I think those are things we don't really talk about sometimes with healthcare is just how timec consuming it can be to actually manage your illness.

[Jennifer]

Absolutely.

[Dr. Nance]

And how expensive it is to be sick.

[Anna]

Yeah. It's like if you don't have, maybe you have the time, but you don't have the money. Or maybe you have the money and you don't have the time.

[Jennifer]

The support system. Yeah. There are people out there that don't have the support system. Luckily, you know, I mean, I wasn't driving.

[Dr. Nance]

I hope not.

[Jennifer]

I had people that were, you know, my mother and my friend and my care, they would take me to these appointments. And it takes a lot from everybody when I say I had an army. I legit had an army and I'm so grateful to everyone.

[Anna]

So I think that community is a really important part of health as well.

[Jennifer]

Right.

[Anna]

You really do find out who's in your corner when you're struggling. And I'm so happy to hear that you had such an amazing group of people around you. Not everybody gets to have that experience.

[Jennifer]

I mean, they, they set up gofundmes, they set up meal trains, they set up. You know, the support in my community was just amazing.

[Dr. Nance]

You com, you completed the cancer treatment and regimen and are you in remission? How did that end up?

[Jennifer]

I had my last mammogram last month and it came back fine. Everything looked good. There was no new, new areas of concern. And so I'll continue, you know, doing that on a yearly basis now.

[Dr. Nance]

So the treatment for the cancer was what ended up, for the most part, treating all of these random symptoms that you were having, Correct?

[Jennifer]

Yeah, Honestly, they started going away pretty quickly. I did have one IVIg infusion prior to starting chemo and I think that helped. But then once my chemo started and with the continued physical therapy, that helped tremendously. Still to this day, I have neuropathy in my hands and my feet and some numbness, but not a lot. But my hands and my feet are still pretty tingly sometimes and they can get numb for the Longest time, people didn't want to sit beside me because I'd make them rub my hands because it just felt good. So I'm walking and actually, kind of a good point about my son. He and I actually go to the gym three nights a week together, and that's our thing. So, you know, I'm going to the gym and walking and working, you know, doing all the. All the life things again. But I think it was funny. Remember the MRI, which Dr. Nance had hit on it. But remember the MRI that, you know, there was nothing, showed nothing, and they couldn't do anything for me for the second neurologist? Well, my third neurologist at MUSC got a copy of that, and she went to try to look at it, and just as Dr. Nance said, because of my movements, it was unreadable. And she said, you can't even see what's on here. There's nothing to see. So, you know, that was one of those blows. It's just like, really, why don't you just have me come and redo it?

[Anna]

I don't know how you resist the urge to, like, roll up to that first neurologist office totally Pretty Woman style, and to be like, you thought I had a mental health issue. Big mistake. Big mistake. And then drop the word cancer, because I feel like that is the ultimate mic drop, and then just walk out and be like, I know that's incredibly immature, but I would want to do that. I mean, it's hard because doctors are people too, right? People make mistakes, people have issues. But at the same time, like, how can you improve from a mistake if no one ever brings it to your attention, right? Like, that doctor's moved on. He's not thinking about. He probably doesn't even remember you, Right? So.

[Dr. Nance]

And. And I think there's a way in which to do things that doesn't put the physicians on the defensive and instead offers a learning opportunity. And I even remember I was watching a TikTok video about a woman who, she knew she had ovarian cancer, and she was talking about symptoms that she had that she couldn't explain what they. Why they were happening. But now that she knew the answer and one of them was tingling in her hands, and I thought to myself, you know, I'm a hand surgeon. If someone comes into me with tingling in their hands, there, I am not thinking about ovarian cancer. Right?

[Anna]

Yeah.

[Dr. Nance]

But in this case, probably she was having a paraneoplastic syndrome where the tingling was a symptom of the cancer. The over response to the immune system. But just me hearing her story. Now, I have that in the back of my mind, right? When I have a young woman in her 30s or 40s who probably doesn't have carpal tunnel. Right. And at least to think of it in terms of. We talk about this all the time. Our differential diagnosis, our wide net of possibilities. And now, because I heard that woman's story, that's in my net.

[Jennifer]

Yeah.

[Anna]

I mean, what I would like to ask you, Aaron, what is the right way to have that conversation with your doctor that leads to them progressing in the way they treat people, but at the same time gets the point across that, like, maybe you didn't get the care that you deserved? Because I think I am. I'm an emotional being. And I have a feeling that my gut instincts are not the way it should be dealt with. I. E. Pretty woman screaming. So what would you recommend? If we want to give feedback to a doctor, what would be the best way to do that?

[Dr. Nance]

I honestly think the best thing would be to schedule another appointment with the doctor to just discuss what happened. And again, it's mostly about the tone, Right. In that we are using this as a learning opportunity. And not because I will say that in the back of every doctor's mind, right. We're thinking, does this patient want to sue me? Does this? Right. Okay. So from the get go, the physicians are going to be on the defensive. And again, the number one reason why patients sue physicians is not because of bad outcomes. It's because there was bad communication. Because I think most people understand no doctor is trying to intentionally miss something on your mri, Right?

[Anna]

No.

[Dr. Nance]

No doctor is intentionally recommending a treatment that they think could hurt you. But where the patients get really angry is, well, you didn't even tell me that the MRI was unreadable. To me, that is the most egregious part of this whole story. Not. Not that they didn't necessarily get the diagnosis right away. That communication about the test. And I go back to it, wasn't that there wasn't anything wrong on the test. It was that the test wasn't readable.

[Anna]

Yeah.

[Dr. Nance]

And that is different from saying there's nothing wrong.

[Jennifer]

Well, the fact that they did not follow up. I had to call them literally, might have been even as much as two weeks after the mri and never spoke with the doctor, Spoke with the nurse. And you know, her words. The MRI didn't show anything. There's nothing more we can do for you. And that was that conversation. And, you know, then to go to my Third neurologist who has a copy of it and says, there's nothing to see because you can't read it. I just think that's horrible. I just can't believe that. Obviously he had to know that you couldn't read it. I just think that's a terrible practice by doctor. And so it was just scary not being able to figure out what was going on and then running into so many people that weren't interested in potentially helping me find out what was wrong. There comes a point where you just kind of have to do what you got to do, you know, and we get up and, you know, and also we're dealing with medical bills and disability and short term disability and Medicaid. And so we had pretty full days if we weren't at a doctor's office. But I have a good support system. And so I honestly did. You know, I'd mentioned this about the drinking. This is kind of where I want to cry at that particular point. You know, prior to all this happening, I was kind of in a low place anyway, and I kind of isolated myself anyway. And so to have the relationships and the people that love me come back around for me really meant a lot because again, I'd kind of isolated myself at that point. And one of the things that I've said in the past was I kind of felt like cancer almost saved my life. That's where I was.

[Dr. Nance]

And I think that's a theme that is throughout our episodes is the patients almost always come out stronger in the end and they really learn to trust themselves. And you won't be caught again. Right. In this situation where you're going to let someone tell you, no, that's not real, or that's nothing.

[Jennifer]

Absolutely.

[Dr. Nance]

Well, it's an incredible story. And again, one that, you know, cancer is so common and so prevalent that sometimes it's. It's easy to just blame all the symptoms on your cancer. But your case is a really cool, great example of how there can be other problems related to the cancer that you don't just brush off. Right. Losing your vision, losing the ability to walk. I don't think anyone who is diagnosed with breast cancer that that's on their radar as a possibility.

[Anna]

Yeah, I'd never heard of that. I have never heard of that before.

[Dr. Nance]

Well, Jennifer, thank you so much for taking the time to share your story. I can only imagine how frightening it was when you didn't have an answer. And again, you went from living life to being in a wheelchair for absolutely unknown reasons. So thank you for sharing that with us and you will help so many people. Inspire them to speak up for themselves when they know that something is wrong with them.

[Anna]

100%.

[Jennifer]

Yeah. Thank you guys so much for having me. It's been really great telling my story and hopefully it can maybe help someone out there get their own diagnosis.

[Anna]

And another reminder, get a mammogram.

[Jennifer]

Foreign.

[Anna]

The Medical Detectives is a Soft Skills Media production produced by Molly Biscar Sound designed by Shane Drause if you have a medical story you'd like to see featured on the Medical Detectives, please email it to stories themedical detectives podcast.com.

[Molly]

The information provided on the Medical Detectives is for informational and entertainment purposes only and should not be considered medical advice. While we may feature licensed medical professionals, including doctors, we are not your personal doctors and no doctor patient relationship is established by listening to this podcast or interacting with our content. All discussions are general in nature and may not apply to your specific health situation. Always seek the advice of a qualified healthcare professional before making any medical decisions or taking any action based on the content of this podcast. Never disregard professional medical advice or delay seeking treatment because of something you have heard on this show. If you are experiencing a medical emergency, please contact emergency services immediately or consult a qualified healthcare.