The Medical Detectives - Zoe's Story: 24 Hours from Paralysis

Episode Date: September 3, 2025

Zoe’s story is a masterclass in “collect the dots so you can connect the dots.” After years of migraines, numbness, GI chaos, and escalating sciatica, her symptoms were brushed off as “stocking-and-glove neuropathy,” weight, or stress. Her symptoms crescendoed to saddle anesthesia, leg tremors, and urinary trouble, which were the red flags doctors used to finally make an emergency diagnosis, and just in time because Zoe was only 24 hours away from being completely paralyzed. Join the conversation! Have a medical mystery or story of your own? Send it to [e-mail]. ***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 pro***

Welcome back, Anna. Hello. I missed last week, and I'm sorry. I had a little medical appointment, which, you know, medical detectives got to prioritize the medical stuff. This week's episode is kind of wild because even though, obviously, we are not providing medical advice here. I got to see you a little bit in action, and that was kind of, that was fun for me. Well, it's not every case where I am one of the experts in the fields of the medical mystery that we're solving. And to be honest, you know, what my discussion with Zoe, who's our guest,

is really rooted more in the fact that online, I'm known as little misdiagnosed, and I have become this repository for all of these women who have been misdiagnosed in their stories. And I see the patterns of conditions that have been misdiagnosed over and over and over again. So now I'm seeing them in real time. And in Zoe's case, as we have mentioned before, that this is not a podcast about giving medical advice or diagnosing patients, but I did want to at least offer some potential suggestions for avenues that she can talk to her own doctors. And right, that's always been one of the goals of this podcast is to empower people to have better conversations with their doctors.

A hundred percent. And I think you did it in the exact right way. And I will say this is probably the episode that you will see Aaron get the most heated out of any episode we've had. And it's still like this subtle elegance in which she delivers her frustration, but you can tell. You can tell that she is not happy in parts of this episode, which I really enjoyed seeing, just because usually you reserve, you know, a monochrome of doubt, right? But since it's your specialty, you're like, absolutely not. Well, this is my daughter's favorite vocabulary word, but indignant is anger at something perceived unjust. And in this case, I think that is the best word I could describe is that I was indignant.

Absolutely perfect word choice there. So with that, let's jump in. Hi, Zoe. Thank you so much for joining us with the medical detectives. Hi. Yeah. The shock that went over your face. You're like...

Yeah, I was like, I listened to your show, but I forget how it starts. arts, so. And you too, and it's my show. Well, you know, we usually start the show by talking about what life was like for you when you were young. Would you consider yourself pretty healthy growing up? Yes. I was like, I guess I remember being sick, but my family, so let's go back a bit.

So youngest of five, four older brothers, and my parents, they were involved, but they also prided themselves. They called us Viking babies because they were like, Viking babies don't cry. They don't complain. So we grew up not really going to the doctor and just sort of suck it up. You'll get over it. So going to the doctor was never really seen as, like, you just get over it. Out of sight, out of mind. Like, you don't really need any sort of medications. So still to this day, sometimes I'm like, I don't really need to take a Claritin, but then I take it. And then I'm like, oh my gosh everything's better so yeah i was like i wasn't that sick but i i guess i just don't know because we we just don't talk about things we don't bring things up we don't start conflict

to this day so growing up is always just like suck it up figure it out so we were pretty independent kids elementary school was good middle school i mean being a teen girl is awful being the only daughter. I know, I know. Being a teen girl is the worst. Yes, yes. But lots of things started changing where my oldest brother was sent away because he was running with the wrong crowd. And then the three other brothers chose to go to boarding school.

But then by the end, I was left at home. home. So it was the only one there. I sort of lost a lot of our core support network. And so I was at home as an only child, used to being the youngest of like a big group. And that was when my anxiety and depression and suicidal ideation started was when I was probably about 12, 13 um that is a rough time to go through all of that because like you're also not stable right like right you're not stable on a good day much less yeah so middle school was rough i was just really depressed and i guess i started self-harming in middle school but it sort of traveled on through high school a little bit and then it was also high school i started getting migraines

So I had chronic migraines with a persistent visual aura. So I started migraine medication. And then I started antidepressants. And we had the psychiatrist that didn't, he didn't really taper on and taper off really well. And so I had kind of a major breakdown. So were you able to clearly differentiate issues between your mood and your physical migraine type problem? I never correlated or connected that. I just thought it was, I was like, oh, I'm sad. Oh, I have headaches. But I did get migraines a fair amount, but the worst part was the chronic visual aura. And so that was also the first time that I learned not to ignore it, but I could, I trained my brain to not always focus on it. So when I was in high school, I described it at, I was like, I've never done shrooms, but this is what I feel like it would be like.

So if I look at where the ceiling meets the wall, it just sort of worldly. So it sort of like moves and then there's stars and stuff, but I can go about my life. And I learned how to just sort of ignore it. But that was sort of when I learned because it was just sort of like, well, migraines, migraines happen. Can you explain what a visual aura is? So before you get a migraine, some people get sort of these visual alerts. So it can be bright lights or spotty vision. You lose your peripheral vision.

But my brain now just ignores it. So I pretty much was always having that but wasn't always getting headaches. So they were like, oh, that's not normal but not unheard of. So that was my first sort of medical mystery, if you will. So jumping forward a few years, still pretty depressed. I ended up dropping out of college and checking myself into a psychiatric facility. So that's on my record. So I did inpatient for an extended period of time, and then I did outpatient.

So essentially, I had an entire year of really intense therapy and deep. BVT skills and all of this stuff. But that was the first time that a doctor had said to me, I think your migraines are related to your anxiety. If you don't let these feelings out, your body will figure out a way to push it out. So I was like, oh, that's interesting. And just sort of went along with my life.

So after inpatient, I ended up moving up to Seattle. So that was 2011, I moved to Seattle. But then late summer of 2015, I started getting tingling in my hands and feet. And it wasn't a lot, but I was like, oh, this is odd, this isn't great, I don't like it. But I was still able to live my life. And I was like, well, it's just like a weird quirk. But as we know, I am not the best. at going to doctors or talking about feelings or how my body feels, any of that stuff. So I just

sort of went about my life. And then a few months later, I was still very active. I had a dog. I was hiking all the time. And I was trying this intermural sport. And it's a stick and ball sport. And so it was sort of like field hockey. But I lift the ball and hit the ground. And my back just went out. So I was in a lot of pain, couldn't get up, all that stuff, finally go to the doctor, get prescribed 12 weeks of physical therapy. Then after that 12 weeks, I was like, yeah, it's okay, I guess. But the numbness in my hands and feet was progressively getting worse. And it got to the point where I was getting nervous driving because I couldn't feel my feet. And so I just started walking and Ubering everywhere because I was like, ah, yeah, I can't really feel my feet.

Like, I couldn't really tell the pressure points on the gas pedal and whatnot. So I go to my primary care provider, and she is immediately like, that sounds like MS. And I was like, wait, what? So she gives me a neuroreferral. I go there. I have to wait a couple weeks because my insurance isn't super great at this point. go to the neuro appointment, and he immediately is like, it's not MS. You don't have to worry.

But there's a very good chance that this is a tumor on your spinal cord or in your brain. And I was like, oh, okay, great. So I'm a little panicky at this point. Yeah. As you should be. You're like, no, just low-key, I'm stressed about it. tumor on my spine. Duck. Yeah. But then it was just sort of like, well, your symptoms are still pretty recent. We can get you in in about two months. So I have this waiting period of waiting

for the MRIs with and without contrast. So eventually I get in the MRI and do a bunch of imaging. I think I had a couple different images done. And he's like, oh, great news. It's not that. And I was like, okay, but what, what is it? And he was like, okay, we can run a couple more tests. And so I don't know what it's called, but essentially he did one with like, it's checking the nerve reaction. And so it's a pretty big needle that he like sticks into your muscles and then sort of shocks it. And then there's a readout that says how your nerves are reacting. Do you know what that is as a doctor? Yeah. So this is when people, say that they have like nerve studies. It's actually two separate studies. It's EMG, which test the muscles

and the nerve conduction study, which tests the velocity of the nerves. So the EMG is looking for damage to the muscle. Now, if you don't have any electrical input into the muscle, the muscle is going to show damage. The nerve conduction is testing how fast is the signal traveling, right? They're setting you a shock. They're traveling how fast is it going to your brain back to the muscle? So that's testing really the timing of the nerve versus the EMG is testing the strength of the muscular contraction. Okay. Yeah. It wasn't great. It wasn't great because it was just a bunch of needles stuck in my forearms and my calves and my thighs. And it goes in, in my mind, it was like, went in three inches. It probably didn't. It was not that deep. But it felt like a lot,

especially because it was a lot of pokes, a lot of times. Yeah. This is certainly an, I've had it myself. It is an uncomfortable test. Yes. And I will say, I had hit my deductible with all of this imaging. So I was like, okay, we're just going to do everything I can because it's free. It's not free, but insurance, insurance makes no sense, but I was like, okay, I got to get everything done. This is the medical version of Girl Math, right? Yeah. Okay.

I met my deductibles, so it's free. Absolutely. So we got the EMG, and then he was like, okay, yeah, so that was kind of inconclusive, come back for a muscle biopsy whenever you have time. So he was like, I'm not concerned, you seem fine. And at this point, I think just all of the other stuff going on in my life was just sort of taking the majority of my focus. And I was like, well, I can walk. I can do the things.

I'm still living my life. And my cousin was diagnosed with leukemia. And she was going into hospital and was probably going to need a bone marrow transplant. And she called me asking to be her primary caregiver. And side note, she was in Singapore where her mom lived. But I was like, she asked me. She doesn't ask for anything, so I'm going to go. So I quit my job, go there, and that was a pretty rough month where I would wake up, eat breakfast, take the MRT to the hospital, spend six to eight hours in the hospital, and then walk back.

So I was walking a couple miles every day. just back from the hospital across the city. So it was a lot, to put it lightly. It was a lot. Yeah. So I wasn't really focused or even looking internally on what was going on with me. I was just focusing everything outward. So I did that for a month.

And that was really, really emotionally draining because I was just taking a lot of it on. And then finally, I hit my breaking point. Not great for your mental. health, turns out. So I left that and then went back and I got the muscle biopsy. And I got a whole punch on the top of my foot, in my calf, and on my forearm. And then that comes back as, he was like, we can't really find what's causing this. But I think you just need to accept that you have the nerves of a 60-year-old diabetic. So you just have, you just have polyneuropathy. You're just one of the lucky people that has no explanation for why. And I was like, okay, great. Thanks for your

time, sir. So once again, just sort of like, it's whatever. This is my life. I'm just going to go about living my life. And again, this is not a diagnosis. This is a description. Polyneuropathy, meaning multiple neur dysfunction. Yeah, they called it sock and glove polyneuropathy. Yeah. Not at all. that term stocking in glove neuropathy is used for people who are pretty significantly diabetic who lose the sensation to their fingers and their toes. These are the people who need

the amputations of their fingers and their toes. So no, not a 20-something year old no. Yeah, no. Yeah. But then once again, I was just sort of like, okay, it could be worse. At least I'm not dying of cancer. At least I don't actually

have a brain tumor. So his plan was just sort of like, here's some gabapen for when it gets painful because it is sort of it can be painful you know when your hands are really cold and you run them under hot water and it's just sort of that like burning sensation it it sort of feels like that yeah yeah and so it sort of feels like that or if you're like arm or foot falls asleep um and before you call we call that a paristhesia yeah so it just sort of feels like that. And then right around this time was when I started having a lot of GI issues. I don't want to sound like I'm probing, but because I kind of know the medical

outcome, can you describe what the GI symptoms were? My body sort of stopped processing high fiber stuff. So this might be TMI, but that's what we're here for. Medical stuff. Medical stuff. Rough is gross. Let's just be real. So quinoa lentils, it would just immediately come out one way or the other, whether I would just vomit immediately or just have almost immediate explosive diarrhea. And then if I ate salads pretty soon after would rush to the bathroom and it would just be full leaves, like completely unprocessed, undigested in the toilet. And I went to a doctor and he was like, well, then just stop eating salads. I was like, but I like, I like, but I like salad. And did you ever have any problem controlling your bowels or your bladder? Not my bladder, but there were some times that it was like, oh, I need to go to the bathroom and not make it. So essentially, I have a, now I have a bunch of friends that have GI issues.

issues, especially now that we're older. And it's sort of like, well, like, it would just be like, how was your day? Well, I didn't ship my pants today. So we're going to count that as a win. But I, but I, but the reason why I'm, I'm, I'm harping on this is because this plays a very big role in your eventual diagnosis that I don't, which we now, you are aware of. Okay. Still, still. So, so. So that's just to say, I had a lot going on. So right up. So you continue to have the neuropathy and now you're having GI issues. You've had history of migraines. So what is the next kind of step? You've had these biopsies and nerve tests that are for the most part sound inconclusive. Mm-hmm. And so then I throw my back out again. And I was working in health care. I was working in an adult day health facility. And I threw my back out and the nurse comes upstairs and she was like, what are you doing? on the floor and I was like, I can't get up. And she was like, what are you doing? I'm sending you to

my chiropractor on my lunch break. Like, I'll call ahead for you. And at this point, I was like, chiropractors, I don't know if I believe it, but hobbled in and then was able to walk out. And I was like, oh my gosh, what is this witchcraft? This is magic. I know it's not for everyone, but it really helped me. And so I proceeded to go twice a week for the next few years just because my back was so bad and things would move, but they didn't stay set, if that makes sense. So it'd get adjusted. They were like, oh, things are moving. And they found out that like my hips were tilted and my head was tilted. And so they're like, your body's compensating for something. We don't really know what. Let's work on your core like strengthen your core so your back doesn't need to do so much work um did they send you to

pt at all this time that time they did not but for a completely unrelated thing i ended up at a podiatrist and he was like i don't really care what else is going on has anybody looked at your lower spine and i was like no they were just worried about upper spine and it was funny he was like everybody looks down on podiatrists because we're always looking down, so they look down at us. And he was like, of course the neurologist wanted it to be this like super sexy, fun thing

of a brain tumor when it's honestly probably just a really boring thing. You need to get x-rays of your low back. I did. And this is the first time I was told that I have degenerative disc disease. So I'm

going to let the doctor explain degenerative disc disease. I mean, degenerative disc disease is you have your vertebrae, which are the blocks in your spine. In between those vertebrae are your discs, your intervertebral disc, the disc that are inside, inter, meaning in sandwiched in between the bones. On an x-ray, an x-ray can only show hard things, bone. It doesn't show the disc, which is made up of kind of like a gelatinous material. And so when you look at an x-ray, you'll see these kind of blocks with some space in between them, and that black, blank space is where the disc should live. Now, in degenerative disc disease, on an x-ray,

you'll see those blocks either closer together or they'll be kind of pushed forward or pushed backwards. Sometimes you can see extra bone called osteophytes. So on x-ray, degenerative disc disease would look like the blocks of bone are all kind of too close to one another or look like they're almost rubbing against one another. Mm-hmm. And at this point, they're like, this is what it is. There's nothing you can really do about it until your disc is completely gone. Until it's bone on bone, we're not really good.

However, I want to say, how old are you at this point? maybe 30 29 30 that just cannot be it maybe 32 32 I'm I'm terrible at math I can't math for the life of me but yeah so you know what so like I cannot accept that a 32 year old on an x-ray someone is going to you know now obviously you know the next text is going to be an MRI which shows more detail of the soft tissue, but that is, that's a hard jump to, it's a hard conclusion to come to in a 32-year-old. And listen, like 100% people who are younger can have degenerative disc disease. You did have a fall a few years prior so you could have post-traumatic for some people, like even I know in my husband's family, it runs in their genetics and they all have back

problems and they've had disc herniations. So usually, I would say in younger people, it'll show up as a disc herniation before you get to the degeneration, because the degeneration is really a side effect of a disc being herniated. So life just sort of goes on like that. I'm finally pretty mentally stable. I'm working out all the time. I was the most productive I have ever been in my entire life. I would like working full time, go do a workout class, come home, walk my dog and then like go out on dates and stuff. So I was just living my life and just wasn't really thinking about stuff. And then my dog who I'd gotten when I first moved to Seattle, I'd had her for almost nine years at this point. And then

she gets diagnosed with a terminal bladder cancer. And so she has four to six. Four to six months to live. So this is September of 2019. I'm really sad that my dog has died. And through her death and the depression that followed, I gained about 30 pounds. So I'm about 200 pounds at this point. But so important part, living alone, no dog. And then we all know what happens. March 2020, the world shuts down. And so I am just left. completely isolated and alone. And my mental health just spirals even more. Not great times. So I just am trying to figure out what to do with my life. My back hurts, but I've sort of been taken care of it. But then the world shuts down. I don't have a reason to get outside and walk

because I had been walking a dog for nine years and so it just like felt awful to walk and not have a dog. It's just so isolating really hard to live alone. People who were alone during that time know what it was like. So it was just incredibly a lot of time, too much time alone. So I decided to leave Washington. And I will also say because I left Washington State, I couldn't afford any of my medications again. So do not recommend it. Do not do it, but I just stopped all of my meds cold turkey because I couldn't afford it. And then also I was just like, well, like, what else am I going to do? So I had to choose between staying somewhere where I can afford the medication or going somewhere and trying to just have a better quality of life. I'm sort of floundering and trying to figure out

where to land. And so I'm sort of trying on places. But so essentially I'm spending a lot of time driving cross country and I'm camping along the way. And so my back is hurting, but I was like, well, I've been doing these road trips. I'm sleeping on the ground. Maybe my, my pad isn't as good as it used to be getting older. I can just sort of dismiss it and just being like, ah, it's not that bad. I'm still hiking. I'm still doing the stuff. But I remember I was talking to my friend's dad who was about to do surgery because he had really bad sciatica. And he was explaining it. And I was like, wait, I think I have that same. And so when I was going and seeing chiropractors, I was like, I have really bad sciatica. So that was like kind of a light bulb.

And I was like, yay. I now have some verbiage to tell people this is what's wrong with me. And just for people to clarify, sciatica is a painful nerve condition that it feels like it starts in your butt and then runs down your leg. And it's because the very nerve endings of your spinal cord, the L5 and S1, which runs down the back of your leg, are compressed in some way. And that is called sciatica. Mm-hmm. So I was like, I have that. Yay, because I still didn't really know what was going on. And I was just sort of like, I have back pains. I throw my back out. Oh, this sucks. But, you know, you just sort of work through it. Yeah. Yeah. Yeah. Yeah. And I would also say it's amazing how much pain you can talk yourself out of when it becomes common, like when it's your everyday experience, especially when it gradually gets worse. So you're just like, that's just normal. I'm just older. Right?

Your pain tolerance, I started explaining it. I was like, it's like the frog in the boiling water. Like, you don't really note it. Like, you're just sort of like, yeah, this is fine. This is fine. This is fine. And then it's immediately not fine. But we're still a ways away from that.

And so my brother lived in southern Arizona and he bought his dream house. that was a 50-acre ranch that is 15 minutes outside of a town of 800. So I called them and I was like, hey, can I come? And I was not doing well mentally just because I was just so isolated in starting to be in a lot more pain. I wasn't a great joy to be around. But, you know, fake it till you make it. this two shall pass it'll get like you'll get over it so end up in southern arizona to become part of the family unit of my brother he has two young kids and a really wonderful wife but it was

just so incredibly rural and AT&T didn't work there so then I had to switch phones to do Verizon and then there was a windstorm and so the Verizon tower got turned and everyone one up the valley lost all cell service. So there was no outside communication. And at this point, my sister-in-law, the job opportunity of what she got her master's for, all of this stuff. It opened up. So I was going to be home with the three-year-old while she went back to work. And she had been out of the workforce for a while. So she was nervous. And I was like, yeah, I mean, I'm literally just here. Of course I can. I'm up in the mountains alone with a three-year-old. And that is my social circle. So not a lot of

conversation going on. Lots of talk about dinosaurs. And so just once again, incredibly isolated and in a lot of pain and just really lonely. So my mental health is low. At this point, I just had constant sciatica. It would wake me up at night. I would wake up in pain, go to sleep in pain. I started drinking more. You have yet to have a lumbar MRI. Right, because I'm in the middle of nowhere.

I'm like going to a masseuse like once every three months while I'm there. So I'm just hanging out surviving by a thread. Gotcha. And you're no longer going to a converseous. chiropractor, correct? No longer going to a chiropractor. I'm drinking a lot because I was like, I need to feel something else if I'm going to fall asleep. I was starting to sort of go insane from the chronic pain. I was getting really sort of snippy. I was walking a lot. I found I guess right around towards the end, my left leg started falling asleep. I would be walking. If I was walking for too long,

my entire left leg, starting from my hip, down to my foot, would just start tingling. I could still feel it, but that's not right. Right, right. Like pretty obviously not okay. Not right. And then at this point, I'm like, okay, once this school year is over, I'm going to move back to Washington primarily for. They have Apple, Apple Health, Apple Care, really great program, free health care. So I end up back in Washington, and my leg is falling asleep. I'm having sciatica.

I'm driving. I get out of the car and twist my ankle, fall to the ground, twist my ankle, down for the count. I was like, well, that sucks. That's really painful. swells up. Not my first. In high school, I played a lot of sports and frequently sprained my wrists and my ankles. And so I was just like, this sucks, but not, not new news. So that's March 2022. And then just to recap to keep to keep everyone up to date on everything. So you're having pain in your back and sciatica. You're having dislocated and. You're having dislocated and are you still having migraines and issues that are these related or unrelated i'm guessing they're related in some regard right so you're still getting migraine problems yeah but that's also i've

been having those for so long that i that it just it just whatever at this point it's not my main focus my main focus is the walk in general the pain and like trying not to shit my pants honestly that okay we got to bring you got to bring back down back around to shit in the pants, which honestly when you're going through something like that is such a debilitating thing because you can't go anywhere because you're constantly afraid you won't be able to find a bathroom or you have to like survey for a bathroom first. And your constant sprains. Yeah. Yep. And constant sprains, which we've just added to the mix. Yes. Because I am telling you, there is one thing that can connect everything.

Mm-hmm. Do-da-da. And so I haven't been walking really out of shape. I think. I think between my dog getting diagnosed with cancer and then the height of COVID, I gained 75 pounds. So I'm definitely heavier than I was and literally just trying anything to keep the pain down. And I'm drinking heavily. I'm taking lots of ibuprofen. I still have some gabapentin left over. So taking that. But honestly, just sort of relying on gummies, like CBD and THC gummies and wine, because self-medication, you know.

But chronic pain is hard, just so hard that I end up getting established with a doctor. Because I wanted to go back to Washington for healthcare to figure out what was going on with my back. Because this had been going on for years at this point. So just help. Help me. I don't know what's wrong. Help. And because I'm on the Apple Health, I'm going to the residency clinic. So I never see the same doctor over and over. Just want to put in there.

If you have a specific issue and are not going for checkups, I would not recommend a residency clinic. Just because there's not the continuation of care, which I learned the hard way. And they would suggest I stretch a little bit more or go to physical therapy, but they couldn't see anything physically wrong with me because I still had the range of motion and everything. So I felt that they felt that I was just being dramatic or crazy. So I'm in Washington trying to get this help. I was talking to my good friend, her grandma had passed away, and she was like, I'm in grandma's house, there's a guest room, like, just come, get here, and you'll figure it out, we'll figure it out.

Once fall hits, we realize that I'm just sort of this, like, dark cloud of depression and chronic pain, and I'm not really using my work. I'm just like, yeah, my back really hurts right today, but not really going into it. it because being the youngest child, or I don't even think it's the youngest child. I think it's just my family. It's just sort of like, well, if you can't do anything about it, like complaining isn't going to help anything. So what's the point of complaining? So I was just like, this is my burden to bear. I'm fine. It's fine. That's like my catchphrase turns out. It's a consistent theme. Consistent thing. Yeah. Yeah. That tracks. And so Seattle's getting darker and darker. My friend's

working as a nurse. She's working in health care. So her job was really hard. And she was leaving and I would be in bed and come home. And it seemed like I hadn't moved. But I was at the point where I could walk for about 20 minutes before my left leg, fully fell asleep. And I was at the point where I had to choose, do I go get food? Do I walk my dog? Do I go get groceries? Or do I shower? On a good day, I could maybe do two of those things. I could never do more. So I was feeling, I was having a lot of feelings because I was like, my friend is letting me live at her house. I'm so grateful for this. We knew we weren't great roommates, but we love each other. And so she was doing this favor for me. But I was just feeling

so guilty because I could just sort of feel her resentment growing and growing and growing. And it's not fun to be somewhere where you're not necessarily wanted. No. And it's not that you don't want, like, we're, we're, we're great friends, but it's hard. It's just really hard. So I start house sitting, become a professional house sitter because I was like, that's something that'll get me out of the house for long periods of time. So yeah, start doing that consistently sort of Thanksgiving 2022.

At this point, both legs. are starting to fall asleep. Not just the left leg, but the right leg starts falling asleep. And I find out that if I do squats, like, I can just stop and do squats, and it sort of relieves some of the pressure, some of the pain. Legs are still asleep, but I'm not worried that I'm going to trip, if that makes sense. So I'm... This is why it's me that you still haven't, like... Gung-Gung-ho and figuring out what it is.

So this is when, that's when I start going gung-ho. Like, I finally get a primary care provider, theoretically, going to the residency clinic, start going all the time. I think they were pretty dismissive of me because I do have a history of pretty intensive mental health issues, and I was drinking, and I was continuing to gain weight. And so I don't think they could see past that. to take me seriously and believe that my pain was real.

And I guess at this point, I was explaining it to my chiropractor, and she was the first person to say, I think there's something nerve-related happening in your lower spine. If you get saddle anesthesia, that's what you need to look out for. What is saddle anesthesia? What does that mean? It's where sort of your saddle area, so sort of your groin and, upper thighs fall asleep.

Did you imagine sitting on a horse where you sit on the saddle, that area, if that becomes numb? Okay. Yeah. Yeah. She's the only person that's brought this up. I'm going to the doctor and they're like, well, maybe let's switch your antidepressant to, well, Buterin.

We use that for people with chronic pain. Sometimes that helps them. And I was like, can I have an MRI? And they were like, no, we're not there yet. like we have to jump through all these hoops before insurance will approve it all of this stuff let's talk about your drinking and your weight and at this point it was getting to about 14 minutes i could walk for 14 minutes before my legs fell asleep and it's like how do you expect me to lose weight if i can't walk for more than 14 minutes maybe we should cause a problem that would

just cause me to be more active as a result like yeah and plus why does insurance get to make the of what we need. But that's the complaint I have on every episode. Yes, yes. Then end of January, this however, this, I can't, I can't even let it be a cop out of insurance. This is just gross negligence from the positions and providers. I can't even.

Thank you. Thank you. I really appreciate it. You so rarely say that that you know it's bad. because usually there's like a benefit of the doubt situation not here nope yeah but i am overweight i'm drinking a lot i'm not even asking for pain medication i'm just like what is happening to my body and this one guy was like are you sure like where are you on your cycle and i was like this is not my period i have had ovarian cyst this is this is a

completely part of my anatomy and he was like well sometimes low back pain and i was like do not no. You should get to fight him. I think that that should be the rule is that you should get to fight someone who says something that to you. Like, I'm sorry, sir, you said the fight words and then fight club should commence and you should get to fight them. That's all my God. And you don't get punished for it. You don't get punished for it because no, no, it's like a jury of your peers. Yeah, a jury of your peers will agree. You've decided. Yeah, it's like, yep, you get to fight him now. Yeah. So end of January is the first time I get saddling and And the first time, because I, of course, it's going to happen a lot of times.

So it happens. It, it, so it was like, I'm house sitting. It's this really cuddly dog. He's like laying on my body. And there, there's some things that you don't know until you know. And so he's laying on me. And I'm like, oh, this is what they mean by saddle anesthesia. It's the first time that it's happened.

I push him off of me. and it goes away. And I was like, okay, that's weird. Don't love that, but okay. So the next day it happens again, the dog is on my body, saddle anesthesia goes off. His mom's coming back that day, so I'm just like, you know what, I'm going to take myself to urgent care.

They said, like, good idea. My chiropractor said, if this ever happens, go, and I was like, but it's not happening right. then. So trying to explain it. And I was like, yeah, so it's getting to the point where like 14 minutes, both legs fall asleep. The saddle anesthesia has happened. I hear that's really bad. What I've Googled isn't great. Can I get a referral somewhere? And the person was like, well, if it goes away, then you're fine. And I was like, but I'm not fine. So the first urgent care tried to get me a neuroreferral and ortho referral.

They both got denied by insurance. So I'm just going back to my primary care provider, and I'm like, something is wrong. I think it's nerve related. The sad on anesthesia, it's coming and going, help me. And they're like, well, what's your pain like? And I'm like, well, it's probably like a six or a seven, but it can get up to an eight or a nine. But like right now, we're about a six or a seven. Also, I want to be a bother, but also like, don't be a bother.

So it's just sort of like this conflicting thing. And everybody's just sort of like, yeah, you're fine, you're fine. And then in March, I'm flying to Texas. And this is the point where I'm like, I think I need to request wheelchair assistance. I don't think I can make it through the airport. And I was like, I think I'm being dramatic. And so I was talking to my friend who has her own hip problems. She was getting prepared for a hip replacement.

She was like, you know what? It's a free service. If you think that maybe you need it, just use it. And so I was like, I don't know. I think I'm being dramatic. I think this is a little overkill. But also, I don't want to carry my backpack through the airport. So I decided to do it.

and then on being wheeled through C-Tac is when my legs start shaking uncontrollably. And I'm just sitting there and I was like, this is odd, but I also don't really have feeling in them. And I was like, I think I can stop. I think this is in my head because so many people have told me that. So I was like, I don't know. So then I think really, really hard can kind of get them to slow down, but they're just shaking. And I was like, huh, this is really, this really isn't right. I'm going to pause for a second.

You were so gaslighting yourself because you'd been gaslit by others that your legs are doing, I don't know, what dance down below? You can't control it. And in your mind, you go, that's my fault. I'll just concentrate a little bit more. I made this up. me was like, I was like, well, maybe part of me, like, maybe subconsciously my body wants to look disabled because I look, like, maybe that's just what it is. Um, but then I was like, well, yeah, yeah, I, I am well aware. So that was Thanksgiving. And I'm trying to keep a semi-normal life.

I'm still trying to see friends, but it's also like I can maybe go out once a week and then I'm like scanning chairs and just being like it has to be a high enough chair. It needs to have a back. I need to be able to move the chair in case I need a different position. So I'm getting pretty picky and I'm not like a super fun joy to hang out with. Also like drinking a lot because pain. so yeah so that's like really have one thing to tell anyone what is wrong with you right right right um you just like roll up and you're like i heard a lot and i'm kind of broken and these things happen and like i can't i can't feel my legs sometimes it's worse than others so then take the wheelchair escort back home back to washington immediately go into back to back house sitting gigs and the last one is a really great client, and she has two high-needs cats. One needs insulin twice a day with his food, and the other one needs an inhaler. Otherwise, she has a coughing fit and, like, passes out.

So, very high-needs cats. I've never seen a cat use an inhaler before. I thought that was, like, the fur ball, like, you know, that they were doing. Yeah. Sorry, how do you get a cat to do anything? it's just the logistics don't work out in my mind yeah it's a steep learning curve i'll tell you that and once again if they don't get these things they will die so at this point i can barely walk for seven minutes and i'm walking around these like nice neighborhoods and then like if there's not a

bench nearby i just am like laying on the sidewalk and my dog's just hanging out and then right around this time, I had started going to the acupuncturist who was like, so when you start with me, it was the only, I was looking online for acupuncturist in the area. He was the only one that had sort of immediate availability. So I was like, you know what? Nothing can hurt at this point. Like, I'm in so much pain. And all anybody has told me is like, let's talk about your drinking. And then it's just like this vicious cycle of, I'm drinking because of the pain, the drinking makes my depression worse, the pain makes my depression worse. So drinking, so it just sort of Yeah. It's a, it's a cycle and they don't help each other. And at this point, I started a

notebook. For when I went to urgent care, I had this, like, these are the interventions that I've done. This is what I've done. And it's just sort of, the tremors started on March night. They got really intense on March 11th. March 21st, I went to physical therapy. The next day I went to chiropractor, the 24th through the 26th, immediate burning subtle numbness. As soon as I stood up on the 25th, I woke up crying and nauseous because of the pain. I'm showing up to the doctor's clinic every day and saying the same thing. Like my legs are falling asleep. I can't walk. I can't stand. It got to the point where it's like if I'm standing for seven minutes of the saddle anesthesia goes, I can alleviate it if I lay

down. I have a bunch of nurse friends. And I have an entire page of like punch words that I thought would get attention. So I had like concerned, uncomfortable, safety, quality of life. I'm concerned about quality of care. I'm uncomfortable with the progression and speed of the pain. The lack of a prognosis. Like I'm in so much pain that I can't even really read my writing. So this is like what I was taking with myself to doctor's appointments to remind my like my like bullet. I was like say these words, someone will listen to you and they weren't. And I also was trying to keep it together because I didn't want to come across as like this hysterical woman. Like I also grew up not crying or showing emotion. And so I was just like very a flat affect of just being like, these are my facts.

Can you help me? And they're just sort of like, eh, sorry. And at this point I have a really high pain threshold because my normal was constant pain so it took a lot for it to be even more pain and then just like looking back at my medical history it's just sort of like just suck it up and your body will adapt so my friend came over for dinner and I was like maybe it is all in my head maybe this is like maybe I am making a bigger deal of this and and my friend looked at me and she was like, Zoe, you literally have not gotten up off the floor. You are eating your dinner while laying on the floor with your legs up the wall. This is not normal. And I was like, oh, I guess so. Like, yeah, this is weird, right? Right? Right? Like, am I crazy? So just needing, needing,

like, some people to tell me that, like, it's a- I honestly, I feel like this is a product of us not being taught to trust our bodies like because girl you are like barely able to walk for 14 minutes half your body's numb most of the saddle anesthesia is coming and going but then I've I've been going to urgent care I've been asking for an MRI they're like you're just in stage four of the stages of misdiagnosis this is this is literally correct this is part of the process but I feel like you've been in this stage a little bit longer than most people we talk to. I'm like, I'm lucky, like, kind of impressed at how much you've been denied this. Well, it's like, I've sort of had, like, weird things popping up for so long. I, like, am depressed. So I was like, maybe my

is anger. Yeah. Yeah. Well, in preparing for this, I was looking through all of my my chart notes and just the amount, um, I don't know if you got any of the, I sent some of the photos to Molly of the communications with the doctors and just how dismissive. And then I'm also just sort of like, hi, me again, like trying not to be a pain, but also advocating for myself. And then I was like, I just need to put this in writing. I just want it documented. I want. And then they'll be like, okay, well, I don't think we're there yet. Let's like try another eight weeks of physical therapy. And physical therapy was painful, but also, I should say, I never really lost my range of motion. And I was only 35. I had never been in a car accident. Because physical therapy is

treating the wrong thing at this point. Yes. And I am holding my tongue for very long time. They're just trying to relieve the sciatica and all of this stuff. And so, So I guess before my friend came over for dinner, it was like, okay, as soon as this house gig is up, I'm going to go to the ER in Seattle. Something's wrong. And so finally, I'm like, okay, I'm going to go to the ER Saturday morning. This gig is up Friday at noon. The owners had been in Europe, so I couldn't leave these cats alone because I feel like that's an important part of the story. It's like, couldn't leave these cats alone.

So I was like, okay, as soon as this is done, I'm going to go to the ER. yet. I'm going to go to U-Dub. It'll be fine. And that morning, the owner's going to be back at noon. And I went up the stairs, sat down on the toilet. And I was like, I don't think I can pee. The second I sat down on the toilet, the saddle anesthesia came and I couldn't feel it. So like, the inside of my body is numb. And the numbness is just going higher and higher. So don't remember if I or not, but I was like, I don't think I can. And then, and I'm literally army crawling into the room to try to clean up my stuff. And my friend is like on a business call with her headphones and I text her. And I was like, I need your help. I can't do this. And I'm just like breaking

down because I was like, I can't shower. I can't clean the house. I can't pack. And she was like, yeah, so I'm taking you to the hospital today. Like we, we do not have. for this. And I was like, yeah, you're probably right. My friend is such a, such a lifesaver. So then we go. And my friend has to go pick up her kid. And she was like, I feel really bad about just dropping you off at the front door of the ER. And I was like, it's whatever, man. I've, I've perfected the art of loitering. I can just hang out anywhere at this point because I've been waiting for the doctors so long. And I was like, you're fine. Whatever. in and the lady at the front desk after I like give her my insurance card to my name. And I was like,

do you have any idea how long this is going to be? She was like, you know what? Honestly, you're here on a Friday night. You probably should have waited until Saturday morning. And I was like, I know. I was trying to do that. But I am here because I am having an emergency. And it was only about a two and a half, three hour wait. But at this point, I am curled up on a bariatric chair. I was like, is there any place I can lay down? Do you have a cot? Do you like, I was asking for a sheet so I could lay down on the floor where I was just like, I think I might lay down. If they're not here in the next 20 minutes, I may lay down on the floor in the ER waiting room. So finally I get put in a room and this nurse comes in and he was just like, what brings you in here today? And I was like, let me pull out my notebook. And he was like, I can see you're in a lot of pain. Can I give you something for the pain? and I just start bawling because I was like, I didn't even know I could ask for it because everyone had been like, oh, you're fine, like, keep doing what you're doing, but cut back on the drinking. And he was just like, before you say another word, I need to get you something for the pain because

he was like, it is painful looking at you. And I was like, oh, really? Thank you. So get pain. First time I haven't been in pain in years. And then he was like, okay, what brings you in here? And then I was like, I just need an MRI, please, sir, please. And he's like, okay, we'll put you on the roster.

We'll get to you when we get to you. And in that time, I go to the bathroom and sit down, once again, can't pee. And the saddle anesthesia is back. And then I was like, I can't get off of this toilet. So I pulled a little emergency string, and that's why they have this. them there. So then just these three men come in and just have to get me on a stretcher. And they're like, okay, you're going to be next in line for the MRI. Get into the MRI. Can't stop shaking. So they have to like tie me to the thing because they're like, you're moving too much. Can you stop?

And I was like, I wish I could stop. Like this is also just like having zero control over my body at this point from the waist down. And then before I'm even out of the thing, he forgot to turn his mic off and he called the surgeons and was like, hey, you got to come look at this. And so I was like, oh, so maybe I'm not great. Like, it is real. So then they came and talked to me and they were like, so how have you been walking? And I was like, I haven't. And they're like, so you have three separate medical emergencies right now. So I had a herniated disc, a compressed spinal cord, and the compression had been going on for so long that the fecal sac had fused to my spinal cord.

And I had, is it Quata Aquinas or something? What's it? You have Cotta Aquinas syndrome. You have had Cata Aquinas syndrome for months. Possibly even years, I've never heard of someone having Catoquina syndrome going on for so long without someone diagnosing it because it is so ridiculous that someone has not been able to diagnose you with that. Well, I never, I was never incontinent. But I was also telling people I was like when I would walk and the saddle anesthesia would happen. And they were like, if you're

incontinent, that's an emergency thing. But I couldn't feel it. So I was literally sticking my hand down my pants to see if I had peed myself because I could not tell. And that's why I asked to long time. That's not normal. You describe your GI symptoms and you said, yeah, like sometimes I can tell you, you have had the symptoms for a long time. And there are only three orthopedic surgery emergencies, whereas, like, category one, life or death. Okay, we've got compartment syndrome, which is when the pressure inside of your muscles causes them almost to explode and kill your nerves and arteries. You have necrotizing fasciitis and Cotta Aquinas syndrome, which is when either a mass or too much built up pressure at the base of your spinal cord

chokes off the sensation and the motor functions of your legs and your bowel and your bladder. Those are the three medical emergencies. This is a red, red, red, red flag. Do not pass go. Yeah. And they were like, you were days, if not hours from becoming fully paralyzed. And I was like, cool, cool, cool, cool, cool. That's great. So felt very justified that it was not in my head. I was just incredibly overwhelmed that someone was listening to me and believe me and there was a diagnosis but I should

you were in shock that someone actually figured it out I got the MRI that I had been asking for I was like the MRI would have shown these things what happens after they tell you that you're having you can call it Aquinas syndrome they were like you have to have emergency surgery And I was like, oh, okay.

Like, I don't really remember them explaining what was happening. I don't really remember signing the stuff. I know I did because I was like, what does that even mean? And they're like, you'll have immediate pain relief. And I was like, thank God. So I spent the night in the ER, or not in the ER. I like got moved up because they're like, you'll be the first appointment in the morning. And then next morning, have a casual spinal surgery.

wake up and it the pain is gone but definitely like pain because they just cut the different tap in my body yeah it's surgery to be expected yeah yeah yeah yeah yeah but in getting the feuds thiecal sac off my spinal cord they nicked my spinal cord and so i had to remain flat for 24 hours um so that it wouldn't once again i don't really like this is where things just sort of get kind of blur. So you had a CSF. Mm-hmm. Yeah. And then they were like it was a complication. Yeah. Yeah. And so they were like it was a complication, but well within the realm of risk that happens during surgery. They were like it happened. They weren't stressed about it. I was on drugs finally. So wasn't stressed about it. You didn't care. Yeah. And then after I was able to sit up, surgeons were like, okay, you look great, you can go. And the nurses were like, she cannot

pee and she cannot poop. She cannot go. So I had to like move to a different floor because the surgeons were like, we need the bed. And so I got moved to a different floor. And it took another three, four days for me to be able to void, is the like medical term for it. A lot of interventions. There was, I don't, one of the tricks that people swear never fails is warm prune juice with a pat of butter. That's supposed to be an immediate relief. How to do that a couple times. Still no, still no relief. Because they're treating the wrong thing, prune juice would be used if you had constipation. In your case, you have nerves that are not sending signals to your rectum to allow you to poop. So all you're doing is priming your system

with more shit, okay, that your body can't, literally, that your body can't physically expel because the signals are not getting through. Erin is heated today. She's going ham on this podcast. Rare form. Love it. Well, it's really upsetting to me because it's my own field. Although you've never come across orthopedic surgeon yet. So I'll give my field a pass. But it's in my wheelhouse. And in your case, I mean, I hope you're doing more than just a strongly worded letter to your insurance company who denied you a referral to an orthopedist and to a neurosurgeon

because that was a delay in diagnosis that led to developing true caudacquina, full-blown codicorne. All I'm going to say is Zoe, I think she's suggesting that there are money in the hills for this. It's ridiculous. Not to be an opportunist, but I feel like in this scenario, you basically couldn't have a life for many years in which you also gaslit yourself. So there's emotional damage there, which then also led you to drink, which, again, probably wouldn't have happened if you did not hurt like hell every single day of your life. So I think you have a pretty strong argument that it significantly affected your livelihood, your physical end. mental health. That's all I'm saying from outside of perspective. But I don't know if this is true

because this was also just sort of like sort of a blur. But the neuros students said that they made me a case study. So like, yay, people will learn from this. And then somebody was like, yeah, that's so that you can't sue them. So I have no idea if that's true or not. I mean, I wouldn't sue the surgery. But then they were just sort of like, oh, yeah, like you, yeah. No. No, that's not true. So I've just been existing on fault. They might, yeah, they probably, you know, presented you for grand rounds because it is pretty, it's still rare to have Cotta Aquina syndrome.

The whole thing is that Cotta Aquina syndrome is not a, it's a symptom of something, right? So it's when that pressure on your, the base of your spinal cord got too significant. That's when you develop the Cotta Aquina syndrome. But I have a question for you. after you have this decompression surgery to release the nerves and release the pressure, did you notice any change in your migraines? I still have the aura. I haven't really had a migraine in a while, but I still have the persistent visual aura.

Yeah, because I go back to why did you develop this? back, you know, the predated discs and the tethering. I was told that it was just because I have degenerative disc disease. And they told me that they were like, it usually doesn't happen in someone that's young.

They didn't add any hardware. They just took stuff out because they predict that I will probably need another spinal surgery in the future. Because they were like, if you've already degenerated this much, like, you're

set up for that. So what I will conjecture is that absolutely someone can have a just a large herniated disc in that region of your lower spine, which can cause Cotta Aquina. But for me, this is just a symptom that is part of a larger problem for you. You started off this episode saying that you had numbness in your hands and your feet, right? Kota Aquina and herniusks in your lumbar spine have nothing to do with numbness in your hands. You have migraines. You have GI issues.

You're having multiple springs. And for me, this seems more of a failure of your connective tissue. All of the tissues that are supposed to help keep your body in line, right, in check. And I believe that probably you have had, and it's called tethered cord, but you probably had this tethered cord your whole life. Okay. Yeah, my cousin had that and had to have surgery when she was an itty-bitty baby because it's... Most likely, you have an underlying connective tissue disorder, and that causes an abnormality

for how the tissues, you know, sometimes they're too flexible, sometimes they're too stiff. It's not to say that everyone who has a connective tissue disorder is going to develop a caught or a quina or a tethered cord, but it really, it sets you up for it. And who knows, you might have had that inciting event, which was that hard fall, right, which could have knocked things askew to the point where now. It wasn't even a fall. It was, I hit the ground with a... Yeah, or just, you know, a trauma.

Yeah, yeah, yeah, yeah. But then I was like, it wasn't dramatic. I just threw my back out. Zoe, where are you now? Well, everyone's like... How is it? And I was like, well, I can walk, so things are great. Like, I can do pretty much anything.

Like, I still sort of like tweak my back. Where the fecal sac was is like this weird. like this weird numb spot. So for a little while, I didn't have full sensation in my feet. So I could tell if somebody was touching them, but I couldn't tell if it was a poke, a tap, or a scrape. I just knew that something was touching it. I didn't know how deep it was that. So that was just sort of like, they're like, oh, it's nerve damage. Should come back. Might not. Just wait and see. So one of the big reasons why I wanted to do this is because I was like, the numbness has come back. And so I'm just trying to process all of this other medical trauma and be like, you know what?

No, I was right. I can stand up for myself and all of that before I like start another journey, medical journey. But I do have a really great set up. Like I have like a good team of people that I trust. And a lot of them have kind of complicated health experiences. so they believe me more. So I don't know. I'm still, I was talking to my friend and I was like, yeah, like, I think the numbness is,

I think the polyneuropathy is coming back, but like maybe it's in my head. I don't, I don't know. Maybe I'm overreacting. Maybe I just like, I've also been listening to a lot of Munchausen podcasts. And I was like, maybe I just like miss the, I was like, I hated the attention. I don't like attention. I don't want to be perceived. I don't want any of this stuff.

But I was like, I don't know. maybe I just like need another thing to to do. And then we listened to one of your episodes and the guests said the exact same thing. It was just sort of like, I don't trust myself. Maybe this time isn't important, but I don't know. So yeah. Yeah, I think that by definition, you had a tethered cord. The cord was stuck right to the overlying tissues.

And whether or not that's something you had all your life or was. is secondary to trauma. The reason why I'm harping on this is because, and the little, you know, Dr. Nance Med School 101, when you have, think of the spinal cord, all right, you have the brain, the brainstem, the spinal cord, and then the Cotta Aquina. Cotta Aquina literally means horse's tail. And so you have the spinal cord, which is like a tube. And then you have this horse tail, which is the nerves, the nerves that go into your butt that help you. pee and poop, the nerves that go all the way down to your legs that help you walk. If at any point, the spinal cord is stuck, okay, it's think of it like you have a phone and the

charger, right? In order for you to move, you need some slack in the line, right, in the charger. But if there's no slack, then it starts pulling at the connection. So that tethered cord was pulling on your brain. So that's when you talk, the first thing you said you had migraines. This can go be traced back to your brain is being tugged on from your butt. Yeah. So I have a whole other medical mystery thing that I'm trying to figure out, but I am also going to concurrently try to see if I do have some sort of connective tissue thing, because I do think that is quite possible.

But now I have more of a vocabulary of what to ask or how to describe it, how to, like, yeah. But it is hard. It is hard to advocate for something that you don't know. Like, you don't know what you don't know. Correct. And you know your body. Yeah. Yeah.

You know your body. And this is a line I read someone was talking about in a different setting. But they said, you have to collect the dots in order to connect the dots. And in your case, there were some. dots that you didn't even think were worth collecting. And so I think now there are so many dots for you. And in some ways, that is a good thing because that's more data to help support what is the underlying problem.

Yeah. Yeah. Absolutely. I hope with this new team of doctors that I can find something, or they take me seriously and trust what I'm saying. And so that's what I hope for. But yeah, I will keep you posted. Well, thank you so much for opening up for sharing your story. There's a lot of vulnerability in your story. And I think it's just really going to resonate with so many women who have been gaslit for so long. And in the end, you really paid the ultimate price for being gaslit for

so long to the point where you had a full-on medical emergency where, trust me, you could have died. You 100% could have been paralyzed, but this illness is so, so serious that I said it's only one of three true medical emergencies in my field that we take care of. So I'm glad at least that emergency has passed, and we hope nothing but the best for you moving forward. So one thing that I don't think ever made this episode directly as a quote, but we heard was that Zoe felt like at times she was punished for being honest with her doctor. And that is, I think, the crux of this lesson. And I hope that there are medical providers listening to this episode because when you go and get to that point where you want to deal with a health issue and you are finally, at the point where you're like, I'm just going to lay my cards on the table because I want help.

And then you're punished for doing that or you're not believed for doing that. That does a level of damage that will not only affect this interaction with the doctor, but with every medical relationship you will have in the future. And I think that it is hard enough for someone to say, I am drinking, I've gained weight, I've had these other things going on in my life, I've suffered from depression, I've done a lot of work to deal with it, but it's coming back to then be met with a lack of credibility instead of compassion for the bravery it takes to talk about things that have a lot of stigma around them with your doctor. And I think that that is a fundamental change that needs to happen is that for people to feel more comfortable talking about those things with their physician, so they can get better care. Absolutely.

I was just having a conversation with one of the world's experts on Ellers-downloss in Pots. And he was saying that, you know, similar, we know there are certain chart buzzwords that set patients up for unfair bias, you know, bipolar, history of substance use. He was saying how now when a patient has been diagnosed with pots and that's on their chart, because there is still a large portion of the medical community who does not even believe that is a real problem, that they're seen as making things. up, right? So we always, as physicians, I mean, whenever anyone goes into surgery and the anesthesiologist goes, I need you to be truthful with me. I need to know, right, exactly what you're taking, how much

you're taking. Patients should feel confident that that information is not going to be held against them. Agreed. I think it's, I think the complicated thing about it is that a lot of these stigmas, and I think we talked about a little bit in the episode as well, are archaic, right? Like, mental health is a condition. It is a disease that you treat. And why should a person be punished for a disease that they were born with? We don't go say, saying like, oh, you have cancer, so I'm going to have to treat you worse or not believe you because you have cancer.

It needs to be on the same level of the way we view any medical issue. And personally, and I know this is the controversial opinion, so this is world according to Anna. But I also believe obesity in a lot of ways is related to people's health and bigger issues than just weight gain. And I think when a person comes in and says, I've gained weight, the first thing a doctor shouldn't do is say, oh, it's a moral failing. Oh, you screwed up. Oh, you're not taking care of yourself. And instead, ask, what's happened to cause their previous behavior to change? because I don't think people wake up and want to gain weight and especially don't want to talk about it with their doctor.

So when someone does, it means something's changed. And that should be the discussion point, not the weight. I think that's a great point. You know, a lot of these things that we talked about on the episode, even though you may never experience Cauda Aquinas syndrome, right? This is a very, very rare syndrome. The themes are unfortunately universal. of feeling like your pain is dismissed, of having your symptoms downplayed, of getting denials

because of insurance, having to move states so you can get any type of health care. And so I really thank Zoe for opening up. I said multiple times on this podcast that she was in a very vulnerable position to share some of the things that she did and were very fortunate for her to be this case for us to talk about. And I would just encourage anyone who has their own story, their own medical mystery, please send us an email. It's Stories at the Medical Detectivespodcast.com. And the best way that you can help us continue to share these stories is to share this podcast with someone you know, to like it, to comment on it to encourage more conversation around these very under-talked

about problems of health care. On that note, we'll see you next week.