Speaker 1: He described it as I looked like I looked like
Speaker 1: cookies and cream pudding, Like I was that shade of gray,
Speaker 1: and he's like, I'm taking her straight to the emergency room.
Speaker 1: A lot of doctors either they've never heard of it
Speaker 1: or they don't believe it exists. These patients are just
Speaker 1: ignored because it's very difficult to recognize that there's something
Speaker 1: going on. I just remember praying in the room to
Speaker 1: let me meet my daughter, my God's grace, to let
Speaker 1: me get through this with my wife. I didn't want
Speaker 1: it to all in before it even it all started.
Speaker 1: How terrifying would it be to fight an unknown enemy,
Speaker 1: one you didn't recognize and didn't see coming. What if
Speaker 1: that enemy was coming from within a disease but even
Speaker 1: doctor couldn't identify. Nearly half of all Americans suffer from
Speaker 1: some chronic illness, and many struggle for an accurate diagnosis.
Speaker 1: These are their stories. I'm Lauren Bright, the CHECKO, and
Speaker 1: this is symptomatic. You're immediately hit with a feeling like
Speaker 1: you're talking to a close friend when you meet Shelby Morrison.
Speaker 1: She is very open and genuine, easily getting excited when
Speaker 1: you start talking about cigars, stealer football or her dogs.
Speaker 1: I'd like to tell my friends I have two cats,
Speaker 1: two dogs, two kids in the t J that's my husband.
Speaker 1: I have two little chewin eas. One is huge and
Speaker 1: the other one is tiny, teeny tiny. Wait, you have
Speaker 1: to tell me what is a chewini CHEWENI is a
Speaker 1: Chihuahua and weener dog together. So it's safe to say
Speaker 1: you're an animal lover. I will die petting something that
Speaker 1: I shouldn't. I love all animals. If a brown bear
Speaker 1: was in front of me and it looked like it
Speaker 1: would let me pet it, I'd try. You might lose
Speaker 1: a hand, might lose a hand, might lose an arm.
Speaker 1: But you know what, I have made my peace with God.
Speaker 1: If I am taken out by a giant ball of fluf,
Speaker 1: that's how I go. There is an undeniable strength to
Speaker 1: her positivity. You can sense her perseverance through a long
Speaker 1: struggle just below the surface. I'm proud the most of
Speaker 1: her heart. I think she gives more than anybody that
Speaker 1: I know. She cares about people even when a lot
Speaker 1: of people don't deserve it, and she's always willing to help.
Speaker 1: That was Shelby's husband, T j who has been with
Speaker 1: her for over a decade. Little did he know when
Speaker 1: they first met that they would quickly be thrown into
Speaker 1: a whirlwind journey, pushing Shelby to the brink of a
Speaker 1: life or death situation. The symptoms that would start off
Speaker 1: this roller coaster first started showing up in Shelby during puberty.
Speaker 1: I got through high school pretty normal. I remember my
Speaker 1: high school career just always being really tired all the time.
Speaker 1: But I mean I was doing all the things, and
Speaker 1: you know, I was seventeen years old. I mean I
Speaker 1: never really had an inkling that I was sick. I
Speaker 1: always kind of fell off. Go back, just for a second,
Speaker 1: because you said you're tired, Explain that to me. It's
Speaker 1: really hard to get up out of bed in the morning.
Speaker 1: Like it's not I didn't sleep well kind of feeling.
Speaker 1: It's that I can't move my body, kind of feeling
Speaker 1: like it's almost a complete heaviness of your limbs. The
Speaker 1: word fatigue, I feel like is not an accurate descriptor
Speaker 1: of the tired. So I really didn't think anything about it, because,
Speaker 1: like I said, I was I was an act teenager.
Speaker 1: I was, you know, hanging out with my friends, you know,
Speaker 1: staying up probably way too late. Um, and I didn't
Speaker 1: think anything of it. Shelby always seemed to be tired
Speaker 1: and lethargic. It was difficult for her to have the
Speaker 1: energy she thought came naturally to most kids her age.
Speaker 1: The doctors chalked it up to anemia, which runs in
Speaker 1: her family. I had been told that I was anemic before,
Speaker 1: but I mean it was just, oh, hey, your iron
Speaker 1: slow like eats and broccoli, and that's that kind of
Speaker 1: explained it away. Her symptoms became something easy for her
Speaker 1: doctors and even her family to dismiss as just shall
Speaker 1: be being dramatic, But there was a lot more going
Speaker 1: on here than they initially assumed. Her mom even brushed
Speaker 1: her complaints aside until one day in high school when
Speaker 1: she got really sick in the car. I hit puberty
Speaker 1: at a very young age, and I had very bad periods.
Speaker 1: I would literally be to the point where I was
Speaker 1: throwing up, couldn't be in class because I was in
Speaker 1: the bathroom because I was like, my entire body would hurt.
Speaker 1: And was there any attempt to figure out if that
Speaker 1: was abnormal? No? Not really, I mean mom was like, yeah,
Speaker 1: we all, we all have really bad periods, like it's
Speaker 1: just it's a family thing. And I was angry at
Speaker 1: the time with her because I felt like she was
Speaker 1: dismissive until one day she picked me up from school
Speaker 1: and she got me in the car and we were
Speaker 1: driving home and I literally rolled down the window and
Speaker 1: I puked all down the side of her car going
Speaker 1: down the interstate. And I don't think she realized how
Speaker 1: sick I was until that moment, and I think she
Speaker 1: started to believe me a little bit. Shelby and her
Speaker 1: mother started to realize that her symptoms couldn't just be
Speaker 1: explained by her being anemic or a typically pubescent teenager.
Speaker 1: But Shelby kept her internal battle quiet, fighting off the
Speaker 1: tiredness by herself for years. That was until she landed
Speaker 1: in the emergency room while she was away at college.
Speaker 1: I feel like I am just death warmed over, like
Speaker 1: I can't function. And so one morning I I called
Speaker 1: my boyfriend, who I was dating at the time, not
Speaker 1: my current husband. I was like, I can't breathe, like
Speaker 1: i feel like I'm suffocating, like i've i feel like
Speaker 1: I'm dying, Like I need can you please drive me home?
Speaker 1: What was it about the way you were presenting physically
Speaker 1: that he was like, we're going straight to the hospital.
Speaker 1: His mom was a nurse um and so he looked
Speaker 1: at me and he's like, you're gray, like he described
Speaker 1: it as, I looked like cookies and cream pudding, like
Speaker 1: I was that shade of gray. And he's like, I'm
Speaker 1: taking her straight to the emergency room. And they're like,
Speaker 1: something's all right. And so they admit me and they're like, hey,
Speaker 1: did you know that you have mono? No, but that
Speaker 1: tracks like I had no idea. I didn't know what
Speaker 1: monto was. And they're like, yeah, you you've had mono.
Speaker 1: And my mom's like, well, that explains why your throat
Speaker 1: was really sore and why you felt like crap. But
Speaker 1: this bout of mono wasn't one that she could easily
Speaker 1: get over with some rest and fluids. Shelby was in
Speaker 1: the hospital for nearly three weeks trying to kick this virus.
Speaker 1: Even with her history of anemia, sickness during her periods,
Speaker 1: and then this severe case of mono, there was no
Speaker 1: digging further to see if they all tied together. Yeah,
Speaker 1: it's so interesting how mono is downplayed as just like
Speaker 1: a rite of passage. Yeah, but it sounds like you
Speaker 1: were experiencing even at the time that you thought it
Speaker 1: was just mono, very severe symptoms. Yeah. I mean that's
Speaker 1: the turning point for me. That's when my life completely changed.
Speaker 1: Other than the breathing issues, are there any other things
Speaker 1: looking back that you were dealing with? Were you getting
Speaker 1: lightheaded if you stood up too quickly? Yeah, so I
Speaker 1: would get bouts of you know, lightheadedness infested up too quickly.
Speaker 1: Nothing to alarming at that point. The fatigue was still there,
Speaker 1: the heaviness and my joints and my limbs, and I
Speaker 1: was always out of breath, but you know that brushed
Speaker 1: it off, as you know, it's just complications of mono.
Speaker 1: I mean, I always knew that something wasn't right because
Speaker 1: I know my body. But you get to a point
Speaker 1: where you have these feelings and then you second guess yourself.
Speaker 1: You're like, am I making it up? Am I crazy?
Speaker 1: And it's insane? So, like I said, life went back
Speaker 1: to normal for a couple of years. Not wanting to complain,
Speaker 1: she internalized her health issues until she finally stumbled upon
Speaker 1: someone who truly did hear her and take her symptoms seriously.
Speaker 1: Her husband t J. They met well. T G was
Speaker 1: speaking out of Future Farmers of America, of and where
Speaker 1: Shelby was competing in the Talent pageant. Other than being
Speaker 1: drop dead gorgeous, she has a voice that sounds a
Speaker 1: lot like Martin McBride. And I thought somebody was playing
Speaker 1: a recording of it, and I looked down and it
Speaker 1: wasn't It was her. And it was kind of hard
Speaker 1: to ignore somebody that pretty and and that talented, and
Speaker 1: I was just kind of attracted to her from day one. So,
Speaker 1: having spoken to your wife, I know that her health
Speaker 1: issue started before you two even crossed paths. When was
Speaker 1: the first time that it became apparent to you that
Speaker 1: there was something ongoing. Well, she's always been somebody that
Speaker 1: was always, for lack of a better term, she was
Speaker 1: just always sick. There was always something, and when she
Speaker 1: would get sick, it would it would take her down
Speaker 1: a lot more than me. My husband A joke with
Speaker 1: him all the time that he got the really short
Speaker 1: end of the stick of that whole through sickness and
Speaker 1: health thing, because I mean the entire time he's known me,
Speaker 1: I mean, on our first date, I was sick, twenty
Speaker 1: year old Shelby was still suffering from chronic fatigue and pain,
Speaker 1: as well as lightheadedness when she would stand. But now
Speaker 1: I had a partner by her side and so much
Speaker 1: needed uplifting news a daughter on the way. At the
Speaker 1: time when life should have been about celebration, Shelby and
Speaker 1: t J were struggling to make ends meet, not knowing
Speaker 1: the looming fight with this mysterious illness was about to
Speaker 1: take a turn for the worse. It was terrifying because
Speaker 1: we were so young and we were so poor, and
Speaker 1: we were stretching ourselves then with her working and me
Speaker 1: working and trying to finish my bachelor's degree. She was
Speaker 1: here in Ashland and I was spending most of my
Speaker 1: time in Lexington. It was really really tough. And then
Speaker 1: when we got halfway through the pregnancy, things obviously started
Speaker 1: to going wrong, very wrong. So I'm navigating my first
Speaker 1: pregnancy and I feel like this was completely unrelated to
Speaker 1: the condition that I had at the time. As she
Speaker 1: was growing, she ended up actually pushing my appendix up
Speaker 1: underneath my rib cage in my back, and so I
Speaker 1: went to the hospital for two weeks. That pain must
Speaker 1: have been excruciating, and the thing that came with it
Speaker 1: was the nausea, the throwing up, like and I'm twenty
Speaker 1: years old, I've never had a baby before. I don't
Speaker 1: know what I'm doing. I thought I was dying. I
Speaker 1: thought my baby was in trouble. We'll be right back
Speaker 1: with Symptomatic A Medical Mystery Podcast. Now back to Symptomatic
Speaker 1: A Medical Mystery Podcast. Shelby Morrison was in and out
Speaker 1: of the hospital for two weeks trying to find out
Speaker 1: what was causing her this constant, overwhelming back pain. With
Speaker 1: no headway into finding out the source of the problem,
Speaker 1: it worsened to the point where Shelby started vomiting uncontrollably
Speaker 1: and the pain became unbearable. She rushed to the doctor.
Speaker 1: I screamed, and he was like, I don't know what's
Speaker 1: wrong with you, but we're getting you upstairs right now.
Speaker 1: And by ten o'clock that night, they're like, oh, hey,
Speaker 1: you're having surgery in the morning. I just remember praying
Speaker 1: in the room, you know, to let me meet my daughter,
Speaker 1: to let me get through this with my wife. I
Speaker 1: didn't want it to all in before it even it
Speaker 1: all started. They ended up taking my pandis out and
Speaker 1: apparently if it would have twenty four more hours, it
Speaker 1: would have burst, and it probably would have killed us both.
Speaker 1: I mean, that's how close we were, and it was
Speaker 1: all because of dismissal by medical staff. Then again, I'm
Speaker 1: I don't understand a lot of things in the medical field,
Speaker 1: but to me, it's pretty easy to get an ultrasound ordered,
Speaker 1: the thing that ended up saving her life. We live
Speaker 1: in an area of the country that sees a lot
Speaker 1: of young pregnancies, a lot of unmarried pregnancies. Unfortunately, a
Speaker 1: lot of people who do try to gain the system
Speaker 1: for pain pills, and there's a lot of addiction in
Speaker 1: our area. And I get it. But you know, we
Speaker 1: weren't that, and we tried to convey that, and it
Speaker 1: didn't seem to matter. We were just approached as if
Speaker 1: we were a statistic. A seemingly unconnected emergency appendected me
Speaker 1: that saved Shelby's life and her baby's life with just
Speaker 1: hours to spare. And just as this young couple thought
Speaker 1: things were calming down trying to navigate the usual excited
Speaker 1: nerves of new parents, more complications show up for Shelby
Speaker 1: and their child. I'm only like four weeks post up.
Speaker 1: I started having to go back to the hospital again
Speaker 1: because I just felt I felt like I was having
Speaker 1: a heart attack. Turns out my blood pressure was at
Speaker 1: stroke level and they couldn't figure out why I was
Speaker 1: having preoclampsia, but I didn't look pre acclaimptic. Preclampsia is
Speaker 1: a potentially dangerous complication of pregnancy. With preclampsia, you might
Speaker 1: have high blood pressure, kidney damage, or other signs of
Speaker 1: oregon damage. Left untreated, preclampsia can lead to serious, even
Speaker 1: fatal complications for both mother and baby. I wasn't swollen,
Speaker 1: I wasn't retaining fluid, but you hooked me up to
Speaker 1: a machine and I was one six eight over one. Now,
Speaker 1: explain to me what that feels like. I know what
Speaker 1: that sounds like in terms of the numbers, but what
Speaker 1: does that feel like? It feels like you're running a
Speaker 1: marathon and you're sitting still shelby What is going on
Speaker 1: psychologically at the point than I mean, I'm worried about
Speaker 1: my daughter, Like I'm twenty years old. There's layers of
Speaker 1: things going on right now at this point in my life,
Speaker 1: and I'm just trying to navigate being a new mom
Speaker 1: and trying to do what's best for my baby, and
Speaker 1: trying to trust my doctor. It's rough, man, it may
Speaker 1: have been rough on some levels, but they're beautiful. Baby
Speaker 1: daughter was fully healthy and thriving. That's what mattered most
Speaker 1: to Shelby and t J. She was perfectly healthy. She
Speaker 1: was a great baby. And after I had her, the
Speaker 1: dizziness and the fatigue and everything just kind of skyrocketed.
Speaker 1: My body kind of freaked out after that. But I
Speaker 1: just had a baby. I'm a new mom. I'm not
Speaker 1: sleeping well, you know, I'm I'm trying to breastfeed, and
Speaker 1: I'm trying to do all these things. Of these hormones
Speaker 1: are just rushing through my body. Close to a year later,
Speaker 1: they would welcome another child, a healthy baby boy. And
Speaker 1: then after my son was born, I experienced my first migraine.
Speaker 1: I'm not very sensitive to sound, but I am very,
Speaker 1: very sensitive to light. And my migraines affect my whole body.
Speaker 1: So when I say I have a migraine, my eyes
Speaker 1: they throb and they hurt. It feels like there is
Speaker 1: a headband going from one ear to the other of
Speaker 1: just like ice picks jabbing into my brain. My migraines
Speaker 1: go all the way down through my spine. It literally
Speaker 1: hurts in my entire body to the point where I
Speaker 1: get nauseous, I throw up, like it affects my gas system,
Speaker 1: Like I can't hardly eat, I can't hardly drink, like
Speaker 1: water will make me sick when I have a migraine.
Speaker 1: Add debilitating migraines to the quickly growing list of symptoms,
Speaker 1: all at a time when this young family should have
Speaker 1: been focused on creating foundational memories together. This is that
Speaker 1: should have been the happiest time of your life. In
Speaker 1: some ways it was, but in a lot of ways
Speaker 1: it wasn't. And looking back on it now, I wasn't
Speaker 1: the mom that my kids needed, and I wasn't the
Speaker 1: moment they deserved, and I will, I'll always beat myself
Speaker 1: up for that. But you were sick. You were so sick.
Speaker 1: And now now they're old enough to understand, and in
Speaker 1: some ways, I still feel like I'm robbing them of
Speaker 1: some experiences in their childhood because I physically can't do
Speaker 1: some things that they want to do. But they're old
Speaker 1: enough now to where they're they're able to understand a
Speaker 1: little bit better. And the way that my kids show
Speaker 1: me grace now it's just it's heartbreaking and it's so
Speaker 1: moving all at the same time. Like I don't even
Speaker 1: know how to explain it. Gosh, I'm sit over and
Speaker 1: blubbert sorry. The psychological stress of her body breaking down
Speaker 1: and not allowing her to be the kind of mom
Speaker 1: she wanted to be was taking a major toll on
Speaker 1: her mental health. Shelby's body seemed to be deteriorating at
Speaker 1: a time when she needed it most, at a time
Speaker 1: when her kids needed her most. As irrational as it sounds,
Speaker 1: I was scared to death that it's really even sounds
Speaker 1: stupid trying to say it out loud. I was so
Speaker 1: scared that I was going to die and leave my
Speaker 1: babies because I didn't know what was wrong, or that
Speaker 1: my family was going to get tired of me being
Speaker 1: sick or me not feeling good. And you know, postpartum
Speaker 1: depression is a real thing, So I mean, I would
Speaker 1: I would be lying to you if I didn't think
Speaker 1: a couple of times that you know, my kids were
Speaker 1: better off without me because I wasn't a good enough
Speaker 1: mom for them. My O b g Y and at
Speaker 1: the time he prescribed me my first round of antidepressants
Speaker 1: that had ever taken, and I took them very begrudgingly,
Speaker 1: but I knew I had to do something. Shelby and
Speaker 1: t J were both determined to find a doctor who
Speaker 1: listened to Shelby's symptoms and looked at her full medical
Speaker 1: history to get to the bottom of what had been
Speaker 1: plaguing her for over a decade. After bouncing between a
Speaker 1: few different primary care doctors, they finally found one that
Speaker 1: truly heard her story, her new family physician, Dr Tim Hart.
Speaker 1: Right now, at this point in the story, I'm playing
Speaker 1: a psychological game. I looked at Dr Hart and I said, listen,
Speaker 1: I am either crazy or there's something wrong. And at
Speaker 1: this point I don't care which one it is. I
Speaker 1: just have to know. I told him. I's like, listen,
Speaker 1: I get dizzy when I stand up, and I don't
Speaker 1: even really pass out, and it's not even a real
Speaker 1: dizzy feeling like it's it's almost like the room kind
Speaker 1: of spinds a little bit, but it feels like my
Speaker 1: legs are going to give out on me. I said, Like,
Speaker 1: I'm literally tired all the time, Like I could sleep
Speaker 1: for days and still wake up tired. My joints constantly hurt,
Speaker 1: my body is constantly aching, my hair is falling out,
Speaker 1: and a plethora of other things. Oh and that's what
Speaker 1: I was like. I can't remember anything, like I feel
Speaker 1: like my brain just doesn't work, not even percent of
Speaker 1: the time. Doctor Hart talks to Shelby about all the
Speaker 1: pieces of her medical past, her childhood riddled with chronic fatigue,
Speaker 1: getting extremely sick and nearly passing out during her periods, PRECLAMPSI,
Speaker 1: of the migraines, the brain fog, all of it. Doctor
Speaker 1: Hart realizes it's not all into her head, It's all
Speaker 1: very real. He first targets the brain fog symptoms with
Speaker 1: some a d h D medication. Shelby sees a big
Speaker 1: difference being able to keep up with her life mentally,
Speaker 1: but her body is still stuck. What for you was
Speaker 1: the moment where you are like, I'm not dealing with
Speaker 1: this anymore. I need answers. Well. Actually, so fast forward
Speaker 1: to and my husband and I were outside hanging Christmas
Speaker 1: lights in November and it's like ten o'clock at night
Speaker 1: and we are painstakingly hot gluing light clips onto the
Speaker 1: brick veneer of our house. Because I'm married to Clark
Speaker 1: Griswold and we're crazy Christmas people and that's just what
Speaker 1: we do. So I'm coughing up along. I can't hardly stand.
Speaker 1: I'm getting dizzy. When I stand up, it's freezing cold,
Speaker 1: Like I'm so cold to the point where like my
Speaker 1: joints hurt. And my husband's like, oh great, you've probably
Speaker 1: got COVID again. He's like, you need to go get tested.
Speaker 1: So I drive myself to the urgent care that's just
Speaker 1: right next to our house almost. So they take me
Speaker 1: ac and they hook up the machines and they're checking
Speaker 1: my vitals and I'm sitting there and I'm out of breath.
Speaker 1: I'm heavy breathing because I've walked from the waiting room
Speaker 1: to the room and they're like, girl, you're in tachycardia.
Speaker 1: Tachycardia is the medical term for a resting heart rate
Speaker 1: over a hundred beats per minute. Something's wrong, some something
Speaker 1: is is bad wrong, And honestly, at first, you know,
Speaker 1: I was terrified there was an actual heart issue, that
Speaker 1: something was going to happen, you know, like a heart
Speaker 1: attack or an aneurysm, or there was a blockage, whatever
Speaker 1: it was, and it was just terrifying. Shelby's body was
Speaker 1: struggling to regulate her blood pressure and heart rate. Her
Speaker 1: tachycardia quickly got worse right when t J had to
Speaker 1: go out of town for work, so shall be called
Speaker 1: two of her best friends who happened to be a
Speaker 1: nurse and a doctor. I'm sitting on the edge of
Speaker 1: the ottoman and he's trying to listen to my chest
Speaker 1: and ever, you know, do the whole basic workup. And
Speaker 1: the lights go out and I go to fall forward,
Speaker 1: look up and he's got ahold of me, and he's like,
Speaker 1: your heart rates out of control, you're hyperventilating. You can't
Speaker 1: get out of what oxygen like shell. You've got to
Speaker 1: go to the emergency room. I didn't know it then
Speaker 1: at that moment, but the next three hours we're going
Speaker 1: to be some of the most traumatic experiences of my life.
Speaker 1: Shelby rushes to the e er with her heart racing
Speaker 1: and her body freaking out, hoping to get her condition
Speaker 1: under control before anything tragic happens. But the attempting doctor
Speaker 1: isn't exactly concerned. I feel like my heart is going
Speaker 1: to explode at this point, and he's like, well, you
Speaker 1: look fine. He's like, you don't look like you're sick.
Speaker 1: He's like, your vitals like normal. He's like, I'll take
Speaker 1: you back and I'll do an ultrasound just to make
Speaker 1: you feel better, Like he's doing me a favor, just
Speaker 1: to make me feel better. The doctor just completely blew
Speaker 1: her off as if it was stress or anxiety, and
Speaker 1: it was just completely dismissive. And you know, it was
Speaker 1: everything that I had not to to march into the
Speaker 1: e er and give the guy a piece of my mind.
Speaker 1: But I knew at the end of the day that
Speaker 1: was only gonna hurt shelby situation more than anything, you know.
Speaker 1: But it also helped the fact that we had one
Speaker 1: of my best friends, Chris, who is an mp D
Speaker 1: and is explaining that this isn't normal, this isn't anxiety,
Speaker 1: this isn't you know. They're not running the panels they
Speaker 1: need to run that kind of thing, which led us
Speaker 1: into going to the right family care providers that did
Speaker 1: listen to us and got her some testing and got
Speaker 1: her to the right people. Doctor Hart was the health
Speaker 1: provider who listened and did more testing. Shelby went to
Speaker 1: him the next day, knowing anxiety didn't explain away her
Speaker 1: heart issues and battle with tachycardia. Doctor Hart really looked
Speaker 1: at Shelby's medical history, reconsidering her tough battle with Mono
Speaker 1: in a different light. He had an idea of what
Speaker 1: maybe going on and referred her to a specialist, Dr
Speaker 1: Van Darren, who finally had the answer. I'll never forget
Speaker 1: the day that I walked into Dr Van Darren's office.
Speaker 1: It was one of the happiest days of my life.
Speaker 1: Like I will put it up there with like my
Speaker 1: wedding day in the birth of my children. And he's like, hey,
Speaker 1: you know what, what are we seeing you for today?
Speaker 1: And I'll tell him a little bit of what's going on.
Speaker 1: And as I'm talking to him, it's almost like he's
Speaker 1: not even listening to me. He's he's looking at my chart.
Speaker 1: Hey looked at me. He goes, you know you have pots, right, huh.
Speaker 1: He's like, yeah, your textbook pots? Well, um, I saw
Speaker 1: something about that on the internet. He was like yeah.
Speaker 1: He's like, because it's pretty much only it lives on
Speaker 1: the internet. There's very few doctors that even know what
Speaker 1: to look for and know what's going on. He explained
Speaker 1: to me that, he said, we're seeing her eyes and
Speaker 1: pots patients right now. Because, he said, of autoimmune or
Speaker 1: autonomic nervous system disorders are triggered by virus, he said,
Speaker 1: and you've had the Big two, he said. So I
Speaker 1: don't know really what triggered yours, he said, because you've
Speaker 1: had epstein Bar and you've had COVID nineteen. Shelby's battle
Speaker 1: with COVID just intensified her POTS symptoms. The fatigue, the dizziness,
Speaker 1: the migraines, the mono a ka epstein Bar, the proclampsia,
Speaker 1: the brain fog, the blood pressure and heart rate troubles,
Speaker 1: the tachycardia. All of these symptoms pointed to a mysterious
Speaker 1: illness that had been plague in Shelby for thirteen years,
Speaker 1: and now there was a name she could put to
Speaker 1: what she'd been suffering from POTS. Dr Jeff Boris, pet
Speaker 1: electric cardiologists specializing in autonomic disorders, explains more so, POTS,
Speaker 1: or the pastoral orthostatic tychocardia syndrome, is a disautonomia in POTS.
Speaker 1: What happens is patients have this malfunction of their autonomic
Speaker 1: system and they get extremely debilitated due to lightheadedness, techocardia,
Speaker 1: severe nausea, fatigue, cognitive dysfunction or brain fog as people
Speaker 1: are recognizing this term, I think in the setting of
Speaker 1: long COVID and many other symptoms that can come along
Speaker 1: with US as well, Why do you think that it
Speaker 1: is so difficult to diagnose POTS? So what happens is
Speaker 1: a lot of doctors historically have not recognized that POTS exists.
Speaker 1: Either they've never heard of it, or if they have
Speaker 1: heard of it, they don't believe it or are just
Speaker 1: not aware of it. So that's part of the problem.
Speaker 1: And and in the Big POTS survey, half of patients
Speaker 1: took at least seven providers before getting a diagnosis, and
Speaker 1: about a quarter of patients saw over ten providers before
Speaker 1: getting a diagnosis. I think the other issue though, that
Speaker 1: plays into this is that there is anywhere from a
Speaker 1: three point five to one to a five to one
Speaker 1: ratio female to MAIL patients. So with that female predominance,
Speaker 1: this is something that's been a problem in medicine for
Speaker 1: decades and decades, is that female patients who have symptoms
Speaker 1: that are quote invisible are shunted, aside dismissed. So a
Speaker 1: lot of these patients are just ignored because it's very
Speaker 1: difficult for people to recognize that there's something going on.
Speaker 1: A journey to a POTS diagnosis is not short or
Speaker 1: easy for many people. For Shelby, it was long, long overdue,
Speaker 1: and that made hearing her proper diagnosis all that much better.
Speaker 1: But what did that mean to you? Oh my gosh,
Speaker 1: like it meant. It meant the world. It meant the world,
Speaker 1: like I was able to put a name to what
Speaker 1: was happening to me. It was a start, and it
Speaker 1: finally put the chip on my shoulder to where like
Speaker 1: I knew I wasn't crazy and I had been gas
Speaker 1: lit for so many years, So some relief. It finally
Speaker 1: has a name, but just having the name doesn't get
Speaker 1: rid of the symptoms. Shelby and her doctors are still
Speaker 1: working to find a treatment regimen that helps her manage
Speaker 1: her symptoms and gives her back the lifestyle she deserves.
Speaker 1: She's currently being treated with bi weekly IVY fluids because
Speaker 1: dehydration is a implication of POTS that can make the
Speaker 1: other symptoms worse. It's helped me to understand my body
Speaker 1: a little bit better. I'm still on my POTS journey.
Speaker 1: There have been highs and lows. It's been a definite
Speaker 1: roller coaster, but we're still trying to figure out a
Speaker 1: treatment plan that works for me because I'm kind of
Speaker 1: like a gremlin. I can't get too hot, i can't
Speaker 1: get too cold, don't get me wet, don't feed me
Speaker 1: after midnight. Like it's hard to keep it imbalanced. I mean,
Speaker 1: we're still pretty clueless as far as what's actually happening
Speaker 1: to these patients. We suspect that a fair number of
Speaker 1: them or having POTS due to an autoimmune phenomenon. Until
Speaker 1: the medical community discovers more and has it integrated into
Speaker 1: the widespread medical curriculum, there will be some ongoing misunderstanding
Speaker 1: about this syndrome. Something Dr Boris is very familiar with.
Speaker 1: What would you say are the most prevalent and fro
Speaker 1: straighting misconceptions that people have about POTS. Patients are told
Speaker 1: pretty frequently that it's just anxiety or they have an
Speaker 1: eating disorder. That's that's one of the really bad ones.
Speaker 1: So one of the problems that we can see in
Speaker 1: these patients is what we call g I or gas
Speaker 1: or intestinal dismotility, meaning their intestines just don't work right,
Speaker 1: so they are nauseated frequently. So I think the two
Speaker 1: biggest ones that I would say would would be being
Speaker 1: accused of having a psychiatric disorder or being accused of
Speaker 1: having an eating disorder, which certainly falls under the psychiatric
Speaker 1: realm as well. Shelby spent thirteen years fighting these misconceptions
Speaker 1: and defiance to embrace pots of something to consider when
Speaker 1: diagnosing patients. She was pushed a multiple life threatening situations
Speaker 1: second guest her own sanity, felt the guilt of not
Speaker 1: being able to be the mother she wanted to be
Speaker 1: to her children, but luckily she had t J there
Speaker 1: to be her support network, a husband who knows she
Speaker 1: has nothing to feel guilty about. The hardest part for
Speaker 1: it is just trying to convey that I'm in it
Speaker 1: for life. Whatever happens, however it works, we'll get through it.
Speaker 1: And a lot of times, unfortunately in that I think
Speaker 1: that Shelby thinks that there's expectations, or there's feelings that
Speaker 1: I'm missing out or the kids are missing out, you know,
Speaker 1: trying to calm her down and let her know that
Speaker 1: we don't have a list of expectations. Shelby is still
Speaker 1: fighting hard to find the right treatments to give her
Speaker 1: back her sense of normalcy. But one thing she will
Speaker 1: be doing as a mom is making sure her children
Speaker 1: did not suffer from the same runaround she had to endure.
Speaker 1: My daughter is having a barrage of unexplained symptoms that
Speaker 1: and I've never had. She's got random hives breaking out
Speaker 1: all over her body, She's having joint pain, her hair
Speaker 1: is kind of falling out. All of the gas lighting
Speaker 1: that I went through is not going to happen to
Speaker 1: my daughter. I'm not going to be that passive mother
Speaker 1: that sits on the sidelines. I'm trying to teach my
Speaker 1: daughter that you have to advocate for yourself. And I
Speaker 1: told her, I'm your mom, I'm always going to be
Speaker 1: there for you. I will advocate for you. But you
Speaker 1: have to trust your own body, and you have to
Speaker 1: know your own body. So if there is something wrong,
Speaker 1: speak up. Speak Up. To find out more information on POTS,
Speaker 1: visit standing Up to pots dot org. My name is
Speaker 1: Shelby and I struggled for thirteen years before I was
Speaker 1: diagnosed with POTS. On the next symptomatic, Kyle seems not
Speaker 1: to be able to go a couple of months without
Speaker 1: a new break, sprain or dislocation, and worse, a tumor
Speaker 1: was found on a spine. We knew there was a mass,
Speaker 1: but we didn't know if it was benign as a cancer.
Speaker 1: There was just so much we didn't know. I was done.
Speaker 1: I was mentally that was it. I kind of, honestly
Speaker 1: just like gave up. Kyle and his mother Laura battle
Speaker 1: against a tumor that is taking far too long to
Speaker 1: heal and pushing him to the brink of being bedridden
Speaker 1: for the rest of his life or worse, symptomatic. A
Speaker 1: medical Mystery podcast is an original podcast from my Heart Radio.
Speaker 1: Are shows hosted by me Lauren Bright Pacheco. Executive producers
Speaker 1: are Matt Romano and myself. Our EP of post production
Speaker 1: is Matt Stillo. Our producers are Crra Kaiser and John Irwin.