Reply All - #42 Blind Spot

Episode Date: October 12, 2015

Hope is a photographer. One day her body begins to betray her. It starts with her eyes. Learn more about your ad choices. Visit podcastchoices.com/adchoices

Gimlet, this is Reply All, show about the internet. I'm Alex Goldman. And I'm PJ Vote. And this week, Reply All producers, Trutthy Penameney is joining us in the studio, probably because she reported a story. That's correct. I have for you guys today a mystery. Wrong show. Is it an internet-related mystery?

Yes, it is. Right show. Okay. So this is a story about a woman whose body started breaking history. down in increasingly weird ways. It's as if her body turns into a David Lynch movie, and there's nothing she can do to understand it, and nothing she can do to convince people it's real. For the purposes of the story, we will call this woman Hope. And it all starts last year. Hope is 29 living in the suburbs of Pittsburgh, and one beautiful winter morning.

I was walking at a soccer field that's near my house. When I first noticed, well, that feels weird. My eye feels such a weird nagging eye pressure, almost like my eye was bulging a little bit from the inside out. It's so bad that she feels as if people can see it, like it's bulging so much, this one eye. Like if she stands in front of the bathroom mirror and stares her face, can she feel like she can see her eye bulging?

No. So it goes on for a couple of weeks. doesn't go away, and then she says, you know what, I'm just going to have this looked at. I actually just went to the eye doctor that's in Walmart, and she looked at my eye, and she didn't find anything at all wrong with the eye. The eye was perfectly healthy and normal. This bulging feeling, it goes on for a whole month, and then one day she wakes up and it's gone. This would be, I should say this, this would be something in my life that I would probably never give a second thought to, this mild eye problem I have. had for a month if what happened next hadn't happened.

It's evening. Hope is working. She's a wedding photographer, and she's setting up a room in her house where she can meet clients. All of a sudden I stood up and I couldn't see out of my right eye. I thought, oh my gosh, am I having a stroke? I had field of vision in like three quarters of the eye, but the one quarter was completely covered by this weird zigzag freaky thing. It's almost like a kaleidoscope when you were a kid and you used to hold up a kaleidoscope to your eye and it would it would like shine and shimmer like a piece of like mirrored paper in there so i actually remember waking up my sister and she said what are you talking about i said i can't see out of my eye i'm freaking out the weird zigzag kaleidoscope thing goes on for 10 to 15 minutes it only goes away

when she lies down and does the eye that this is happening in is it her stronger eye It's her right eye. So here she has a couple of theories, right? Because she wakes up. Wait, I have more questions. When she looks into the camera to take pictures, does she use her right eye? That's exactly what I asked her. When I'm shooting, that is the eye that I constantly pinched closed.

Like, I constantly wink that eye, constantly. You know, 12 hours a day when I shoot a wedding 14 hours a day. So I started thinking, well, maybe I just damaged it from overuse. from over over blinking. Right, overwinking, I guess. She starts Googling the zigzag eye thing, and she finds out it has a name. It's called a scintillating scatoma, and it's a type of migraine. And Hope, she's a long history of migraines.

At the same time that this is happening, she's starting to get really tired, like winded walking up the stairs tired. And like I said, she's a wedding photographer. So this makes things really awkward with her clients. She's huffing and puffing, trying to keep up with them. I would try to kind of hide that. So I would try to go a little slower. I'd say, oh, my gear's really heavy. Just because who wants to hear someone complaining about, you know, being out of shape, you're 30, sorry.

And then the headaches that she used to get, she starts having them all the time, like this deep pressure behind one eye. A few times she went to see her doctor and he gave her headache medicine. He told me, you know, not to worry that it was not. nothing major. He didn't see any major problems. Did you feel better? I didn't feel better and I didn't feel worse. I just felt the same. So the day that I remember as something was really, really, really, really wrong and frightening was December the 14th of 14. I remember that it's 1214. That's the day that she and her sister go Christmas decoration shopping. They're in this big warehouse.

and she's walking around in a good mood, taking selfies with a Christmas garland around her neck, and then suddenly she's hit with this sensation. It was so, so indescribable. It's like she's standing on a seesaw, and the whole floor is shifting up and down beneath her. And with that, I got a wave of nausea. So at that point, I was like, this is not good.

I don't know what this is, but this is really not good. From this point, these waves of dizziness, they start coming every day, at least four to five times a day, she says, and they last a whole minute. And her headaches, which would seem so bad they couldn't possibly get worse, they get worse. I remember being in the shower and it hit me like, it just hit me like a ton of bricks. Like I'd to lean against the shower wall with how strong this headache was. And just all day pain every day. I actually believe that the pain was giving me panic attacks. I was laying in bed and I felt that I couldn't catch my breath because the pain was so strong.

I mean, to me, just listening to it, it sounds really scary. Is any part of it, like, is it even hard for you to remember exactly what it was like to be in your head at that time? I think mainly I feel shame talking about it because I just remember feeling completely alone at that point. You know, I will say this, three years before I got six, so back in April of 2012, my husband had passed away. So I feel like, it's hard to even talk about it. I'm so sorry. It's okay.

I know it's like there's nothing you can say, you know? Yeah. It was very unexpected for you. It was very unexpected. It was shocking. It was like the last person. that you would ever expect to take their own life. I feel like a lot of people were thinking that this was like anxiety

or this was a physical manifestation of grief or like maybe I was upset about the holidays because it is a tough time, of course. I think people were thinking that like in their mind like she finally cracked or that like, you know, her husband passed away a few years ago and maybe now She's having this breakdown. And I remember having long, long conversation with my mom on the phone when I was laying in bed in the dark and she was at her house. I remember saying, like, Mom, what if this isn't real? Like, I don't know at this point.

I started getting so confused. You know, I'm like, everyone says there's nothing wrong with me. But I feel so sick. Like, could this be emotional pain? Like, could I be making myself ill? It's just before Christmas. She drags herself to the ER. And the doctors check her out and they say, you look fine.

And Hope says, can you do a brain scan, anything? And they say, again, don't worry, you're not having a stroke. Here, we'll give you some migraine medicine and you'll be fine. So basically they just keep saying like, here's some headache medicine and go home. Yeah, exactly. So Hope says by this point, none of the medicines touch her pain. And even more strange things are taking over her body. Like she starts to hear a fluttering. in her ears. Like, what do you mean? Like a pulse? She describes it like a butterfly beating its wings, but inside her ear. And parts of her body, like the palm of her hand, start to twitch uncontrollably. And she has facial numbness. This is the one that freaks her out the most. If she touches a part of her cheek, her nose goes numb. It feels as if her body is just falling apart. She starts seeing a series of doctors, neurologists, headache specialists, a rheumatologist. She makes a a big folder, an exhaustive log of all her symptoms, a timeline, and every doctor she would go to,

she would show this to them. I just felt like they never even had time to review it. They would just take it, flip through it, and be like, so you have migraines, you have anxiety, and there came a point where I was so frustrated. I was like, I don't want to hear that it's migraines. Most people do not have a migraine for four months straight. With twitching and ringing in the ear, it just, that's not what it is. is. She gets an MRI. She says she actually has to beg for one. And the results are clear. There's

nothing wrong with her brain. I just, I was at my wits at and I just didn't know which way to turn. And, I mean, I even discussed up with my parents. I said, I've been to everybody. Nobody can help. I just couldn't. There was just no more, there was no more options for me. Okay, so at this point, before I tell you what happens next, do you guys have any theories? I just don't think I'm not a doctor But I just think like as much as depression anxiety Can manifest in weird physical stuff It's just like it's so

The symptoms are so broke And it's happening so late after the fact What is happening to her super weird And everyone's like you're depressed takes a matvel I just feel like it's something weirder In my head I'm like going to very strange places This is it's weird because I'm trying to be like house You know in this circumstance

And what would house do? I don't know. House would be very angry and limp around. You're there. And, oh, wow, that really is me. Yeah. But I feel like now my thought is like maybe she has some sort of inner ear problem. Oh. That's causing imbalance.

And when she lays down, it helps her out. But how does that explain the eye? This is so stupid. But is she like doing this like a diet thing differently? So she tried that. She's, someone said maybe it's, gluten. So she went.

My mom is like anything that goes wrong in my life. She just convinced I have a gluten thing. So I'll be like, things aren't working with like my co-host. And she's like, you got gluten. Seriously. Had she traveled anywhere? No. Was there like a weird toxic chemical factory in her town?

It's Pittsburgh. Good Pittsburgh burn. Surthie, are you going to tell us what happened? Yes. Are you going to tell us before or after the break? After. Okay. Should people who are listening sit there while they think about stamps.com or Squarespace or whatever and come up with their own theories?

Yes. They can also look to the Internet. Is the implication that she is going to look to the Internet? Perhaps. Ooh. I'm excited to find out what happens after the break. It's weird that we genuinely don't know. Coming up, I have no idea.

I have no idea what's coming up. Coming up, something else, and hopefully an answer. Otherwise, this would be very frustrating. Here's what happens, Ruthie. We just listened to two minutes of advertisement and you're supposed to tell us what's going on now. All right. By this point in Hope story, it's the spring of 2015. She's seen eight doctors, spent thousands of dollars in medical bills. She's too sick to really work. And she starts to do her own research. She starts off by reading online. Do you guys know that in New York Times column? It's called diagnosis? Yes. Yes. No. Okay. So there's a doctor. Her name is Lisa Sanders. She is a professor at Yale University. She's a practicing doctor. And she's done this amazing column for the times called diagnosis that always presents a mysterious case. And then eventually like the next week, she gives readers the answer. She makes them wait a week? Yes, she does. That's cool.

She's also the inspiration for house. Oh, you should have just said that. That's awesome. The column is an inspiration for house, I should say. So Hope reads every single column that Lisa's ever written. You know, there's all of these mysterious cases, and she's hoping that one of these cases would be like hers. And somewhere in one of those articles,

she sees a comment about a website called Crowd Met. It's a website for patients who feel as if whatever they have hasn't been diagnosed or has been diagnosed incorrectly. And they feel as if their doctors aren't actually listening to them. So I went to their website and it said that, I believe it said that Patrick Dempsey, who is on that show, Gray's Anatty was an investor. Now, part of me was like, oh, he, you know, that seems credible. Like, he has money. The other part he was like, that's absurd. The other part he was like, he plays a doctor on TV. This, I don't know about this. the website, they've got a bunch of people who they call medical detectives.

And are they all MDs or are they? Yeah, they're a mix. So some of them are doctors, retired doctors, nurses, academics who are really well-versed in a particular disease, like, say, Lyme disease. And then there's also people who have nothing to do with medicine. So either patients or, you know, people who are obsessed with Lyme disease, who just go on there to read about cases and discuss solutions. But the thing that really got my attention in the beginning was crowd med says that 60% of their patients report that the site helped them get closer to a cure.

That's crazy. I would like to see this website. Can we see this website? Yeah. Let me just put it up here. It looks like Airbnb a little bit, actually. Like it's, do you know what I mean? Yeah.

There's like submit a case. Solve medical cases how it works. And the first thing you see is just like a big, pretty picture. a very therapeutic looking close-up of two people holding hands and like a gentle non-serif font. Like it's just like here's a friendly, clean place where we're not going to scam you. Yeah. Have you been to a fancy doctor's office? Yeah.

And this makes me think of that, like white walls, sleek furniture. Like a doctor's office where you would maybe Shazam a song you heard in the lobby. So I hope decides to give it a shot. She chooses the standard package, which means she pays $500 of. of which $300 will go to the detectives who solve her case. So it's a bounty. Mm-hmm. But who determines if a case is solved?

The case is solved if the patient says it's solved. Got it. Customer is always right. Exactly. So I wrote up everything, put my whole history on there. I put any test results I had. I put all my blood work on there. And you could even say, what diagnoses do you not want to hear?

So I put, please do not say migraine. please don't say anxiety. Like, I'm open to other suggestions, but don't put those two things there. So how did it feel for you to be able to say that and actually know? It felt great, but I thought people were probably still going to put that. The system generates a screen name for her. She's assigned Hope. She had submit, praise that she didn't just waste hundreds of dollars.

But by morning... I already had two, three, four people commenting on it and reading it. I just remember thinking, like, wow, I can't like. I can't believe that people actually read it already. I can't believe that there's actually a few people out there listening to me. Right away, people are asking her questions. Have you had changes to your skin? Have you had hair loss?

How about a metallic taste in your mouth? They send her academic papers to read. So they kind of did a dialogue, but some people, and I wrote back to every person. Like, I wasn't messing around. I wrote to every single person that wrote to me and answered every one of their questions. And there are four or five people who really get into her case. All you can see is their screen names. So Vita Buena, Flaccio.

I spoke to one of them, KWalk 21. Tell me about what you do, because you sound very busy. Yeah. The DEC Department at the Cleveland Clinic. I'm also licensed physicians, some side clinics on the weekend in pain and addiction medicine. KWalk 21, his name is Kyle. He signed up to be a medical detective on Kradmen last year. He was doing a lot of research and wanted to stay fresh on his.

medical knowledge. Now I'm like one of, probably like the, I've been on the site or something. Hey, not bad. So, yeah, yeah. So, yeah, I've been pretty actively involved. I think, um... Is it addictive? It's, it gets to be pretty addictive, especially when you're involved in the case, because, uh,

you kind of want to see how it plays out. Kyle says he was drawn to Hope's case right away. The first thing he thinks is, this is probably vascular in origin, something to do with her blood vessels. because her illness is affecting multiple parts of her body. I was supposed to be some type of stroke-related illness that she's having or transient ischemic attack or, you know, something along those lines. And so I think I messaged her fairly.

Actually, it looks like I messaged her at 11 a.m. So I must have been doing this at work. And Hope writes back to him immediately. She says, thanks so much. had a neck ultrasound and the doctors say that everything's normal with my blood supply. She and Kyle have a back and forth. And at the same time, other people are writing to her, asking how about a cerebral spinal fluid leak? Or maybe it's leaky gut syndrome. Maybe it's a parasite. So actually, let me show you her case on crowd med. You can see this bar. Yeah. So those are the

different diagnoses. How many people said it was that. And, That's cool. It's like a wisdom of crowds thing. But it just shouldn't work because you should need too high level of expertise for this to work. Right. And so she says eventually what started happening is that answer started clustering in one direction. It seemed to start to center around the neck. At first, I just dismissed that because I didn't have any pain in my neck at all. But then she thought about this one thing that had happened to her, which was she was in a restaurant with her sister. And I remember at one point turning my head sharply to look at something in the restaurant

and almost feeling that I was going to black out at that moment. Like my vision went dark for a second. So I started thinking, well, maybe it is the neck. At the time, I was carrying a camera around my neck with a neck strap all the time. Oh. It weighs probably when it's fully loaded for a large part of the wedding. It probably weighs 12 pounds in that range. And then you're constantly raising the camera up and then you bring it down.

and tilt it 100% like the whole way down to be able to look at the LCD and then you'd bring it up again. And so you probably do this, I mean, 1,000, 2,000, 3,000 times during a wedding. You know, every couple seconds, checking your screen, checking your screen. One crowd mad detective says maybe all this lifting has strained a muscle in Hope's neck. He says maybe it's this muscle, the sternoclydo mastoid muscle. I've been practicing saying that all week. Cerno Clydeo mastoid muscle. Yeah, aka the SCM muscle.

And it's this broad band that basically goes from your sternum all the way to here to the clavicle. And it's a muscle that, you know, it helps you turn your neck back and forth. It also hides your, it's the sheath, basically, for your carotid arteries. Oh. Yeah. So if that's messed up, it could be like pushing them. In fact, if you are trying to kill somebody. You should go for the SCM muscle because your arteries right underneath that, so you just do it quick.

That is so messed up, man. Anyway, this crowd med person sends Hope a chiropractic case study, which describes something called SCM syndrome. Symptoms include facial numbness, dizziness, headaches. So Hope goes to a physical therapist who gives her stretching exercises for her neck. So after about a week of going to physical therapy, two or three sessions, I finally, finally, finally got rid of the headache for one day. And I just, like, I'm going to cry because I just couldn't believe it. I just couldn't believe that, like, it went from being, like, the first, you know,

at first having the headache constantly to having, like, a few pain-free hours to being, like, one day I didn't have a headache the entire day. Mm-hmm. I just, I just couldn't believe it because, like, I had no life at all. I mean, I remember ringing in the New Year, like, New Year's Eve. Literally laying flat on my back, trying to watch Law & Order SVU, like, through a reflection, because I couldn't even sit up to see the TV because I had such a bad headache. And, like, I just kept thinking, like, you know, I wish Steve was here to care for me in it. Because I knew he was the one person that would believe that, like, there was something really wrong.

And I didn't have that support. So I just felt so utterly alone. So, like, at least I got rid of the headache. So I still had all the other symptoms. I still had twitching. I still had ringing in the ears. I still had dizziness. But I got rid of the headaches.

After that, Hope goes to a chiropractor. He works on her neck, and then all her symptoms, they slowly go away. I went to the chiropractor weekly for about three, four months, and eventually I was 100%. So you're cured. Are you 100%? Yes. So at this point, Hope says she feels great.

What? That's so great. She still goes and sees a chiropractor once a month, but since August, she's had pretty much none of the symptoms. So her convalescence is like super recent. She's like back on her feet just over the past a couple months. Right. But the one question I still had is what is this SCM muscle? and how could it possibly cause all of these bizarre symptoms?

So I thought I would go to the library and read up on it and talk to some doctors and figure it out. I emailed Dr. Lisa Sanders. Dr. Real-Life House. I emailed her and I said, hey, there's this case and here are the symptoms. And the diagnosis was the SCM muscle. I wonder, can you explain to me how that would work? And? And she writes back, I think this is the wrong.

diagnosis. What? Yeah. How did she know? She said that there's no way that the SAM muscle could cause a bulging in the eye. And she says she's super worried. She thinks Hope may have this very, very serious condition that could shoot little clots into her brain and cause a stroke.

And could potentially be lethal. Yeah, exactly. So last Friday, all three of us get on the phone. Hey, Lisa. Lisa? Hi, how are you? I'm great. I also have Hope on the phone. Hi, how are you? Lisa explains that when she reads Hope's case, the first thing she thinks is carotid dissection. Well, the carotids are the important arteries that take blood from your heart or just past your heart up to your brain. It's a very high pressure system, and sometimes small amounts of trauma can tear the inside of that

blood vessel creating a different channel. And that tear, it affects the blood supply to one side of the brain. So it could explain some of hope's symptoms, that pressure she had in one eye, the scintillating scotoma she had in that same eye, those constant headaches. You can certainly see them in younger people, especially people who, you know, do a lot of heavy lifting and stuff. You know, the most common scenario is, you know, a weight lifter who lifts a lot of weight. and then suddenly develops a headache. That's the classic finding. And the consequences of missing that diagnosis are so significant that, you know, I was worried about her.

After you first communicated with me, I mean, I was worried about her all night long. This isn't a figure of speech. When Lisa got my first email about Hope, she said she actually couldn't sleep. Oh, my goodness, yeah. Dr. No, I really appreciate it. You know, you speaking with me and coming up with your ideas, because like you, I was very concerned, you know, when I first got sick, that it was something, you know, with an artery, a clot, you know, a stroke, something like that. You know, I would make myself sick worrying about it. Lisa says she doesn't know why the chiropractor visits helped hope so much.

But the fact that the symptoms went away does not mean that she's cured. The carotid dissection is still a real and very very. dangerous possibility, and Lisa's just not sure. We don't live in a world of certainties in medicine. We only live in a world of possibilities. And the possibility of something terrible happening to somebody because we didn't think of something is the stuff of my nightmares. All doctors' nightmares.

The odds are you don't have a carotid dissection, but do I feel confident enough to bet your life on it? Lisa tells hope that she should think about going back to her doctor and asking for a scan that tests specifically for a carotid dissection. And Lisa also tells hope that, honestly, she's not that surprised that her doctors were a little dismissive. I bet neither of the primary care doctors you went to see were women. Mysterious symptoms in women are so frequently attributed to anxiety. I suspect men more than male doctors more than female doctors, but I could be wrong here. Women are also capable of making the same sort of assumptions.

And certainly losing your husband, especially at such a young age, I'm sure was a traumatic and terrible experience for you. However, I think it would be unusual for anxiety and depression to come. cause neurologic symptoms. Right. Exactly. I feel like several of the doctors that I went to were just interested in treating the symptoms, treating the headache, and not really getting to the cause. And the entire time I've been worried about something life-threatening that, you know, that has kept me up at night, let alone, you know, a doctor. Lisa, I'm just curious, I have no idea what your opinion about crowd med is. Do you think that Hope could have done

something better than going to crowd med after seeing those series of doctors? You know, I think it was a reasonable thing to try. I think crowd med has an interesting perspective on this. Obviously, I think doctors should be better than crowds. Should be. Of course. So the thing is that when Hope's case was closed on crowd med, they actually gave her this case report. It's big. It's like the 60. page document with, you know, all the possible diagnoses that the detectives came up with and a series of recommendations. So things she should talk to a doctor about. And right here, number 8 of 15 is get an MRI. So that's a magnetic resonance angiogram. And that is the exact same test

that Lisa just told hope to get. The problem is on this same page is also trigger point massage therapy, probiotic treatment for depression, chair yoga to improve balance. So actually, like, Lisa's advice was in the crowd med thing. It was just surrounded by so many other ideas that it got lost. Like, that's the problem. Right. I just, I feel like the thing I realized looking at it is that that just the size of that file, if your hope is really nice.

Because before that, Hope was going to her doctor and Hope had this binder. And her doctor would not look at the binder. and her doctor had a clipboard and Hope couldn't look at the clipboard and this is like, like, crowdman is just like, here's your file, you can look at it, you can talk to us about it, here's everything we're thinking,

and maybe we're wrong about some of this stuff, but we will talk it out and you will be a part of the process. You're not a patient, you're the client. You're actually not just a client. Like you're actually involved in the process. Right. Because a client sits passively and waits for, like if they were PIs,

they would be waiting, she would be waiting passively for them to find the thing that she's looking for, but she's actually involved in the process of elimination. Yeah, that's kind of a rosy, shiny, happy way of looking at it. But I think it's an issue that the correct and important test that she should have done is essentially buried. I asked crowd mad about this, and they said, yeah, sometimes the good answers aren't as high as they should be. But for the most part, the best answers rise to the top. So when are we going to know anything about hope?

So just this morning, Hope texted me and said that she got approved to get that test. And when she gets her results back, we'll do an update. Shrithy Pinnameney is a producer for our show. Dr. Lisa Sanders wrote a book called Every Patient Tells a Story. It's a collection of medical mysteries. Reply all is hosted by PJ Vote and me, Alex Goldman. Our producers are Tim Howard, Shrethi Pinamennini, and Fia Bennon. We were edited by Peter Clowny.

Production assistance from Kalila Holt. We were mixed by Rick Kwan. Special thanks to Emily Kennedy, Maureen Dwight, Dr. Ryan Shine, and Dr. Sesi Kallaru. Matt Lieber is waking up in a tent so far from civilization that you can't even hear the distant hush of tires. Our theme music is by the Mysterious Brighmaster Cylinder and our ad music is by Build Buildings. You can find more episodes at iTunes.com slash replyall. Our website is replyall.limo.