1 00:00:03,320 --> 00:00:07,000 Speaker 1: Ruby. 2 00:00:09,000 --> 00:00:11,760 Speaker 2: I was driving on the New Jersey Turnpike and everything 3 00:00:11,840 --> 00:00:15,000 Speaker 2: sort of went blurry. It was like somebody's stabbing on 4 00:00:15,080 --> 00:00:16,360 Speaker 2: the side of the head with an ice pick. 5 00:00:16,600 --> 00:00:21,840 Speaker 3: She literally lost the ability to see doing sixty five 6 00:00:21,920 --> 00:00:26,079 Speaker 3: miles an hour. It's God holding the wheel at that point. 7 00:00:26,600 --> 00:00:29,680 Speaker 4: The disease is like a crow flying through the dark night. 8 00:00:30,080 --> 00:00:35,400 Speaker 4: Patients go months or years incurring damage. In all of these. 9 00:00:35,360 --> 00:00:38,320 Speaker 2: Organs, I can't see, and I'm in terrible pain. I 10 00:00:38,320 --> 00:00:40,720 Speaker 2: gotta get some more safe, so I just gotta keep going. 11 00:00:43,080 --> 00:00:46,840 Speaker 5: How terrifying would it be to fight an unknown enemy, 12 00:00:47,320 --> 00:00:51,400 Speaker 5: one you didn't recognize and didn't see coming. What if 13 00:00:51,479 --> 00:00:55,000 Speaker 5: that enemy was coming from within a disease that even 14 00:00:55,160 --> 00:01:02,080 Speaker 5: doctors couldn't identify. Nearly half of Americans from some chronic illness, 15 00:01:02,120 --> 00:01:07,680 Speaker 5: and many struggle for an accurate diagnosis. These are their stories. 16 00:01:09,200 --> 00:01:17,440 Speaker 5: I'm Lauren brad Pacheco, and this is symptomatic. Nika Beeman 17 00:01:17,600 --> 00:01:20,480 Speaker 5: van Shehek is a force to be reckoned with. In 18 00:01:20,600 --> 00:01:23,640 Speaker 5: all areas of her life, she has pushed herself to achieve. 19 00:01:23,959 --> 00:01:27,240 Speaker 5: She's an Emmy winning TV writer, author of four books, 20 00:01:27,319 --> 00:01:30,240 Speaker 5: and garnered a Peabody Award in her twenties for her 21 00:01:30,280 --> 00:01:33,080 Speaker 5: coverage of nine to eleven. Even as a young person, 22 00:01:33,360 --> 00:01:36,520 Speaker 5: Nika was tenacious and full of personality. 23 00:01:37,319 --> 00:01:39,200 Speaker 1: I'm the oldest. I have two brothers. 24 00:01:39,200 --> 00:01:41,959 Speaker 2: I have one that's exactly four years apart, and then 25 00:01:41,959 --> 00:01:45,000 Speaker 2: we have what we call the oops baby, who was fifteen. 26 00:01:44,680 --> 00:01:45,480 Speaker 1: Years younger than me. 27 00:01:45,600 --> 00:01:48,160 Speaker 2: So I was picking colleges and he was carrying around 28 00:01:48,160 --> 00:01:48,920 Speaker 2: stuffed animals. 29 00:01:49,120 --> 00:01:51,680 Speaker 5: It's funny because I was going to ask if they 30 00:01:51,720 --> 00:01:54,440 Speaker 5: influenced your love of sports, But I bet you influenced 31 00:01:54,480 --> 00:01:55,520 Speaker 5: their love of sports. 32 00:01:55,880 --> 00:01:58,000 Speaker 2: They have no love of sports. I'm the only one. 33 00:01:58,000 --> 00:02:00,880 Speaker 2: I always say that my father had me. I was 34 00:02:00,920 --> 00:02:03,120 Speaker 2: supposed to be his son. I was the one who 35 00:02:03,240 --> 00:02:05,120 Speaker 2: learned to fix things with him. I was the one 36 00:02:05,160 --> 00:02:07,440 Speaker 2: who was more adventurous and who left home and was 37 00:02:07,480 --> 00:02:08,919 Speaker 2: willing to go by themselves. 38 00:02:09,280 --> 00:02:10,080 Speaker 1: I'm more of his temper. 39 00:02:10,160 --> 00:02:13,359 Speaker 2: Unfortunately, so I was more of my father's son than 40 00:02:13,360 --> 00:02:14,040 Speaker 2: his own son's. 41 00:02:14,360 --> 00:02:18,800 Speaker 5: And not just any organized sports. You choose ice hockey 42 00:02:19,080 --> 00:02:21,560 Speaker 5: and baseball once you get to boarding school. 43 00:02:21,840 --> 00:02:24,080 Speaker 2: Yeah, I said to my father, there's really nothing to play. 44 00:02:24,160 --> 00:02:25,959 Speaker 2: And my father said, you played Little League when you 45 00:02:25,960 --> 00:02:27,400 Speaker 2: were a kid. I said, yeah, but they don't have 46 00:02:27,400 --> 00:02:30,440 Speaker 2: a female team. They don't have female softball. And he said, 47 00:02:30,480 --> 00:02:32,080 Speaker 2: you know what Title nine says, if they don't have 48 00:02:32,080 --> 00:02:33,880 Speaker 2: an equal or greater sport, then they have to let 49 00:02:33,960 --> 00:02:35,600 Speaker 2: you try out. So you go down there and you 50 00:02:35,639 --> 00:02:37,440 Speaker 2: tell that coach that he has to let you try out. 51 00:02:37,919 --> 00:02:40,040 Speaker 2: And so I went down there and said, my father says, 52 00:02:40,200 --> 00:02:41,720 Speaker 2: I have to at least be given a shot, and 53 00:02:41,760 --> 00:02:43,880 Speaker 2: they said, all right, then we'll give you a shot. 54 00:02:43,919 --> 00:02:47,760 Speaker 1: And I made the team. And then by the next 55 00:02:47,800 --> 00:02:48,760 Speaker 1: year we had another girl. 56 00:02:48,840 --> 00:02:51,240 Speaker 2: So you know, I kind of ruined the whole team, 57 00:02:51,760 --> 00:02:53,760 Speaker 2: or maybe improved it that much more. 58 00:02:55,919 --> 00:02:59,480 Speaker 5: I know that, having read your book, you were very 59 00:02:59,520 --> 00:03:03,440 Speaker 5: close to both of your parents, who have both unfortunately passed, 60 00:03:03,520 --> 00:03:08,320 Speaker 5: but you and your father seemed to have a particular bond. 61 00:03:09,040 --> 00:03:14,240 Speaker 5: How did his raising you impact your personality? 62 00:03:14,560 --> 00:03:16,239 Speaker 2: The greatest thing I think I got from him was 63 00:03:16,280 --> 00:03:19,760 Speaker 2: that I understood that no matter what your circumstances are, 64 00:03:20,000 --> 00:03:21,880 Speaker 2: and for him it was growing up poor and a 65 00:03:21,919 --> 00:03:25,200 Speaker 2: segregated South with one parent, that you can find a way. 66 00:03:25,520 --> 00:03:27,799 Speaker 2: He knew he wanted to do other things, so he 67 00:03:27,840 --> 00:03:30,120 Speaker 2: got on a bus and came to New York. So 68 00:03:30,320 --> 00:03:33,040 Speaker 2: at some point was homeless on the subway. He ended 69 00:03:33,120 --> 00:03:36,280 Speaker 2: up joining the police Academy, then going to the Air Force. 70 00:03:36,960 --> 00:03:39,160 Speaker 2: Then he got sick in the Air Force and ended 71 00:03:39,240 --> 00:03:40,080 Speaker 2: up having to come out. 72 00:03:40,480 --> 00:03:42,000 Speaker 1: But he had done so many things. Then he decided 73 00:03:42,000 --> 00:03:42,960 Speaker 1: he was going to go to college. 74 00:03:42,960 --> 00:03:45,800 Speaker 2: He was going to get a degree, and so he 75 00:03:45,840 --> 00:03:48,360 Speaker 2: got a job at NYU. He actually, when he was 76 00:03:48,400 --> 00:03:52,520 Speaker 2: at NYU, participated in the Freedom Writers to register people 77 00:03:52,520 --> 00:03:55,400 Speaker 2: to vote during the segregated South, and they made a magazine, 78 00:03:55,400 --> 00:03:59,320 Speaker 2: and the magazine ultimately got inducted into the Library of Congress. 79 00:03:59,360 --> 00:04:01,720 Speaker 2: And so I grew always seeing people writing and doing 80 00:04:01,800 --> 00:04:03,320 Speaker 2: those kind of things. 81 00:04:03,600 --> 00:04:06,440 Speaker 5: At a young age, Nica was praised for her abilities 82 00:04:06,440 --> 00:04:10,360 Speaker 5: in writing. Her curiosity and investigative nature led her to 83 00:04:10,440 --> 00:04:13,360 Speaker 5: join the school paper and go on to study journalism 84 00:04:13,480 --> 00:04:17,680 Speaker 5: at Boston College. There, Nica was a standout student and 85 00:04:17,720 --> 00:04:21,080 Speaker 5: an active member of club sports teams. She was headed 86 00:04:21,080 --> 00:04:30,880 Speaker 5: towards the future at full speed, seemingly unstoppable. Around this time, 87 00:04:31,240 --> 00:04:34,480 Speaker 5: as you're getting ready to graduate from college, you start 88 00:04:34,640 --> 00:04:37,640 Speaker 5: noticing that something is a miss in terms of your health. 89 00:04:38,720 --> 00:04:41,039 Speaker 2: In nineteen ninety three, I started having all kinds of 90 00:04:41,240 --> 00:04:44,200 Speaker 2: what I consider unusual symptoms. By the time I got 91 00:04:44,200 --> 00:04:47,120 Speaker 2: to senior year. I was like, I'm just always tired. 92 00:04:47,200 --> 00:04:49,839 Speaker 2: There's joint pains that I didn't expect to have. I 93 00:04:49,839 --> 00:04:52,640 Speaker 2: had dry mouth and dry eyes. My eyes would burn 94 00:04:53,160 --> 00:04:55,120 Speaker 2: to a part where my vision would actually get blurry, 95 00:04:55,120 --> 00:04:57,760 Speaker 2: which was strange because I had twenty twenty vision. And 96 00:04:57,800 --> 00:05:00,440 Speaker 2: then I started having these debilitating headaches that I thought 97 00:05:00,440 --> 00:05:03,279 Speaker 2: were migraines, and I'm like, what in the world is 98 00:05:03,360 --> 00:05:04,039 Speaker 2: happening to me? 99 00:05:04,800 --> 00:05:09,359 Speaker 5: So You're frequently visiting the infirmary and getting no answers. 100 00:05:09,640 --> 00:05:11,760 Speaker 2: No, I'm getting a lot of tests for a lot 101 00:05:11,800 --> 00:05:13,920 Speaker 2: of things, but all of them are coming out negative. 102 00:05:14,560 --> 00:05:16,680 Speaker 2: I didn't have mono, I didn't have meningitis, I don't 103 00:05:16,720 --> 00:05:17,560 Speaker 2: have hepatitis. 104 00:05:17,839 --> 00:05:19,360 Speaker 1: So I started to collect things I. 105 00:05:19,320 --> 00:05:21,719 Speaker 2: Knew I didn't have, but that wasn't getting me any 106 00:05:21,720 --> 00:05:22,800 Speaker 2: closer to what I did have. 107 00:05:23,760 --> 00:05:27,520 Speaker 5: This was just the tip of the iceberg, as varying 108 00:05:27,600 --> 00:05:32,359 Speaker 5: symptoms began to disrupt her life, seemingly disconnected ailments that 109 00:05:32,360 --> 00:05:38,040 Speaker 5: would place her on the long, frustrating, twisting path of misdiagnosis. 110 00:05:38,440 --> 00:05:40,760 Speaker 2: It wasn't until like a couple of years after them, 111 00:05:40,760 --> 00:05:43,640 Speaker 2: when I kept getting sick, that at some point other 112 00:05:43,680 --> 00:05:46,320 Speaker 2: people started to notice like this is happening too frequently. 113 00:05:46,800 --> 00:05:49,200 Speaker 2: As the years drag on, you realize that this is 114 00:05:49,279 --> 00:05:52,200 Speaker 2: not going away, like this keeps coming every time somebody 115 00:05:52,200 --> 00:05:55,000 Speaker 2: gets sick, I'm getting sick. And as you start to 116 00:05:55,040 --> 00:05:56,120 Speaker 2: really see the pattern. 117 00:05:57,640 --> 00:06:00,320 Speaker 5: So at this point a few years in to this, 118 00:06:00,880 --> 00:06:04,360 Speaker 5: not feeling well is becoming a new normal for you. 119 00:06:04,839 --> 00:06:06,839 Speaker 5: But you move to New York City and are living 120 00:06:06,880 --> 00:06:10,120 Speaker 5: your life when out of nowhere, you end up in 121 00:06:10,120 --> 00:06:13,920 Speaker 5: the emergency room because of a massive bleed. What happened. 122 00:06:14,560 --> 00:06:17,239 Speaker 2: I was very sick and I was having a hemorrhage 123 00:06:17,279 --> 00:06:20,000 Speaker 2: and they said to me, we think you have PCOS. 124 00:06:20,279 --> 00:06:23,920 Speaker 2: You might have ruptured assist and that's what the problem is. 125 00:06:24,400 --> 00:06:27,960 Speaker 2: And I said, oh, okay, so I have PCOS. 126 00:06:29,000 --> 00:06:31,840 Speaker 1: I just need some medications. So they give me medication for. 127 00:06:31,800 --> 00:06:34,599 Speaker 2: That, and I go, great, then I should be good, 128 00:06:35,320 --> 00:06:39,240 Speaker 2: except for our wasn't because what I learned at some 129 00:06:39,360 --> 00:06:42,799 Speaker 2: point was that we were treating a set of symptoms, 130 00:06:42,960 --> 00:06:46,200 Speaker 2: but not all the symptoms. So I'm going to a 131 00:06:46,279 --> 00:06:48,800 Speaker 2: doctor for headaches that he goes, oh, no problem, we 132 00:06:48,839 --> 00:06:50,920 Speaker 2: can just make your brain not know that it has pained, 133 00:06:50,960 --> 00:06:52,080 Speaker 2: so we'll give you this drug. 134 00:06:52,400 --> 00:06:54,360 Speaker 1: And I'm like, Okay, no problem. 135 00:06:54,000 --> 00:06:56,120 Speaker 2: That's great, And I go I'm tired, and somebody goes, 136 00:06:56,279 --> 00:06:57,960 Speaker 2: you know what's great for a fatigue? You can just 137 00:06:58,000 --> 00:07:00,400 Speaker 2: take some riddlin. You'll feel much better. You'll have the 138 00:07:00,520 --> 00:07:03,560 Speaker 2: energy you need. I'm just going to each individual doctor 139 00:07:03,600 --> 00:07:06,240 Speaker 2: and getting them to treat whatever symptom they treat. 140 00:07:08,640 --> 00:07:12,200 Speaker 5: While Nika battles a mounting deluge of symptoms in New York, 141 00:07:12,600 --> 00:07:15,520 Speaker 5: there is a doctor back in Boston whose work will 142 00:07:15,600 --> 00:07:19,800 Speaker 5: lead to actually naming the unknown condition she's fighting in 143 00:07:19,880 --> 00:07:20,320 Speaker 5: the dark. 144 00:07:21,120 --> 00:07:25,240 Speaker 4: I am John H. Stone. I am a professor of 145 00:07:25,320 --> 00:07:29,640 Speaker 4: medicine at Harvard Medical School and a rheumatologist at the 146 00:07:29,640 --> 00:07:31,160 Speaker 4: Massachusetts General Hospital. 147 00:07:31,520 --> 00:07:35,200 Speaker 5: A quick aside for those not familiar. Rheumatology is the 148 00:07:35,240 --> 00:07:38,800 Speaker 5: medical specialty that focuses on the diagnosis and treatment of 149 00:07:39,000 --> 00:07:45,800 Speaker 5: rheumatic diseases, which are inflammatory and autoimmune conditions affecting the joints, muscles, bones, 150 00:07:46,080 --> 00:07:47,320 Speaker 5: and connective tissues. 151 00:07:48,160 --> 00:07:53,480 Speaker 4: What your you to of rheumatology the multiorgan nature of diseases. 152 00:07:53,840 --> 00:07:58,280 Speaker 4: Have always aspired to be a good internist who takes 153 00:07:58,360 --> 00:08:04,040 Speaker 4: care of the entire body, including the mind, and the 154 00:08:04,120 --> 00:08:08,520 Speaker 4: challenges of treating the rheumatic diseases really drew me to 155 00:08:08,560 --> 00:08:08,920 Speaker 4: the field. 156 00:08:10,240 --> 00:08:14,280 Speaker 5: Meanwhile, in New York, Nika is unwilling to let sickness 157 00:08:14,280 --> 00:08:18,480 Speaker 5: dictate her life. This fighting spirit fortuitously guides her to 158 00:08:18,520 --> 00:08:21,280 Speaker 5: meet her husband Mark in one of the busiest and 159 00:08:21,320 --> 00:08:25,960 Speaker 5: most demanding journalistic hubs in the city, the newsroom of WABC. 160 00:08:27,320 --> 00:08:30,440 Speaker 5: For someone who hasn't had the pleasure of meeting your 161 00:08:30,520 --> 00:08:34,760 Speaker 5: lovely wife, how would you describe Nika? 162 00:08:35,320 --> 00:08:44,320 Speaker 3: Tough, soft, kind, caring, She's fun she's funny. She a 163 00:08:44,320 --> 00:08:48,000 Speaker 3: really good comedian when she doesn't try and be I 164 00:08:48,000 --> 00:08:49,719 Speaker 3: think those are the ass I would use. 165 00:08:50,520 --> 00:08:53,760 Speaker 6: What do you love most about her personality? She doesn't 166 00:08:54,080 --> 00:08:59,480 Speaker 6: give a flying How do I say that? She generally 167 00:08:59,600 --> 00:09:04,040 Speaker 6: doesn't care what people think about the decision she's made. 168 00:09:04,440 --> 00:09:07,360 Speaker 6: If it is what is right or what is in 169 00:09:07,400 --> 00:09:10,640 Speaker 6: her heart, She's going to hop over every obstacle and 170 00:09:10,840 --> 00:09:13,600 Speaker 6: head in the direction where she needs to go. 171 00:09:14,679 --> 00:09:18,320 Speaker 5: Did you have any idea when you first met that 172 00:09:18,360 --> 00:09:21,360 Speaker 5: she was navigating all these health issues? 173 00:09:21,920 --> 00:09:23,440 Speaker 3: No, I just thought she's a pan of the ass 174 00:09:23,440 --> 00:09:28,280 Speaker 3: sometimes on a hard heartagg to crack. But no, I 175 00:09:28,360 --> 00:09:31,560 Speaker 3: knew that there was one time in the infancy of 176 00:09:31,600 --> 00:09:35,240 Speaker 3: our getting to know each other. I saw her taking 177 00:09:35,280 --> 00:09:38,199 Speaker 3: pills at work and I was like, that's different. 178 00:09:38,640 --> 00:09:40,720 Speaker 5: What's going on. Why do you need to take pills? 179 00:09:41,600 --> 00:09:43,840 Speaker 3: And she was explaining that she was having some liver 180 00:09:43,960 --> 00:09:48,839 Speaker 3: issues at the time. But then I had finished the 181 00:09:48,880 --> 00:09:52,720 Speaker 3: conversation with I'm keeping all my organs, which made her laugh. 182 00:09:53,679 --> 00:09:56,800 Speaker 5: When things started to get a little more serious and 183 00:09:56,880 --> 00:09:59,920 Speaker 5: you realized that you had deeper feelings forming for Nika. 184 00:10:00,520 --> 00:10:02,679 Speaker 5: What was it like for you to see her feeling 185 00:10:02,840 --> 00:10:03,400 Speaker 5: so sick. 186 00:10:04,360 --> 00:10:07,040 Speaker 3: I remember some of the earlier times when she was 187 00:10:07,120 --> 00:10:11,760 Speaker 3: not well. That's where my frustration or the pain watching 188 00:10:11,760 --> 00:10:15,320 Speaker 3: another human being you care about go through it brings 189 00:10:15,360 --> 00:10:19,960 Speaker 3: you some pain. And she was basically like, you have 190 00:10:20,000 --> 00:10:23,800 Speaker 3: to knock that off. I just need you to be strong. 191 00:10:25,200 --> 00:10:30,480 Speaker 5: With Mark's unwavering support, Nika continues to fight this unidentified enemy, 192 00:10:30,920 --> 00:10:35,600 Speaker 5: but the unrelenting struggle manifests in more than just physical consequences. 193 00:10:35,960 --> 00:10:40,040 Speaker 5: The financial burden of dealing with her chronic illness is crushing. 194 00:10:40,679 --> 00:10:41,719 Speaker 1: It is devastating. 195 00:10:41,920 --> 00:10:44,280 Speaker 2: They tell you they don't discuss religion, don't discuss politics, 196 00:10:44,280 --> 00:10:47,680 Speaker 2: and don't discuss money. Even when you're struggling, you don't 197 00:10:47,679 --> 00:10:49,720 Speaker 2: even tell the people who are supposed to be closest 198 00:10:49,720 --> 00:10:51,080 Speaker 2: to you, including my parents. 199 00:10:51,080 --> 00:10:53,200 Speaker 1: How much it's costing me to be me? 200 00:10:53,840 --> 00:10:55,720 Speaker 2: I know that I've spent over a quarter of a 201 00:10:55,760 --> 00:10:58,160 Speaker 2: million dollars out of pocket of my own money to 202 00:10:58,280 --> 00:11:00,800 Speaker 2: keep myself alive and to keep myself releiantly functioning. 203 00:11:00,960 --> 00:11:04,480 Speaker 5: Did you ever get gas lit that it's in your 204 00:11:04,520 --> 00:11:08,560 Speaker 5: head that maybe you didn't have all the symptoms you 205 00:11:08,640 --> 00:11:09,319 Speaker 5: thought you had. 206 00:11:09,559 --> 00:11:10,240 Speaker 1: No, I did not. 207 00:11:10,960 --> 00:11:13,480 Speaker 2: They may have not thought it was as severe as possible. 208 00:11:13,520 --> 00:11:15,720 Speaker 2: So I remember going to one doctor and saying, this 209 00:11:15,800 --> 00:11:17,480 Speaker 2: is what's happening. He goes, but you're going to work 210 00:11:17,520 --> 00:11:21,480 Speaker 2: every day. Yeah, and you're still having a relationship. Yes, Oh, 211 00:11:21,520 --> 00:11:23,000 Speaker 2: then it's not that bad. Then come back when it 212 00:11:23,000 --> 00:11:23,520 Speaker 2: gets worse. 213 00:11:24,200 --> 00:11:28,240 Speaker 5: Over ten years into her struggle, Nika is still fighting 214 00:11:28,280 --> 00:11:33,040 Speaker 5: through intense fatigue, headaches, joint pains, dry mouth and eyes, 215 00:11:33,480 --> 00:11:39,120 Speaker 5: hormonal imbalances, treating each symptom in isolation, a decade of 216 00:11:39,160 --> 00:11:42,600 Speaker 5: confusion and pain without a clear picture in sight. This 217 00:11:43,000 --> 00:11:47,800 Speaker 5: arduous trek is one that doctor Stone unfortunately knows all 218 00:11:47,840 --> 00:11:48,360 Speaker 5: too well. 219 00:11:50,360 --> 00:11:52,360 Speaker 4: There are many diseases in which there is not a 220 00:11:52,400 --> 00:11:56,840 Speaker 4: single diagnostic test, but it does require the clinician being 221 00:11:56,960 --> 00:12:02,320 Speaker 4: familiar with the underlying condition and having access to the 222 00:12:02,360 --> 00:12:03,800 Speaker 4: workup that's been done already. 223 00:12:05,320 --> 00:12:10,840 Speaker 5: How as a physician do you help patients navigate the unknown? 224 00:12:11,360 --> 00:12:14,600 Speaker 5: In terms of the psychological component, you. 225 00:12:14,559 --> 00:12:19,840 Speaker 4: Can only imagine the psychological trauma that patients endure when 226 00:12:19,880 --> 00:12:24,040 Speaker 4: they go for years and go from doctor to doctor 227 00:12:24,080 --> 00:12:27,640 Speaker 4: and test to test and biopsy to biopsy and are 228 00:12:27,679 --> 00:12:31,880 Speaker 4: not given the correct diagnosis. And it's critical to remember 229 00:12:32,480 --> 00:12:36,559 Speaker 4: that patients are very fragile emotionally. The clinician really has 230 00:12:36,600 --> 00:12:38,800 Speaker 4: to keep that in mind moving forward. It takes a 231 00:12:38,800 --> 00:12:43,760 Speaker 4: long time to restore faith and confidence in the medical profession. 232 00:12:43,880 --> 00:12:47,360 Speaker 4: If it's taken years of misdiagnosis to get to the 233 00:12:47,400 --> 00:12:47,920 Speaker 4: right place. 234 00:12:49,520 --> 00:12:53,880 Speaker 5: You're vast approaching fifteen years at this point without a diagnosis, 235 00:12:54,280 --> 00:12:58,080 Speaker 5: and you've been so sick and in terrible pain for 236 00:12:58,200 --> 00:13:02,120 Speaker 5: a lot of that time. You keep pushing in your 237 00:13:02,200 --> 00:13:06,520 Speaker 5: career in life. Did you ever feel like giving up? 238 00:13:07,360 --> 00:13:08,840 Speaker 2: It was just one of those things where you just 239 00:13:08,920 --> 00:13:12,160 Speaker 2: learned to keep it moving. I wasn't raised by complainers. 240 00:13:12,360 --> 00:13:14,719 Speaker 2: No matter how sick anybody was or what was going on. 241 00:13:15,360 --> 00:13:17,760 Speaker 2: There was no excuses, you know, there's no excuse to 242 00:13:17,840 --> 00:13:20,400 Speaker 2: not excel even if I didn't feel well, if I 243 00:13:20,400 --> 00:13:22,040 Speaker 2: had to write it from my bed, that I was 244 00:13:22,120 --> 00:13:25,920 Speaker 2: going to finish what I started. And so it's very 245 00:13:25,920 --> 00:13:28,839 Speaker 2: difficult to be that and be a good patient. And 246 00:13:29,320 --> 00:13:32,560 Speaker 2: the fundamental of how to be a good patient is 247 00:13:32,600 --> 00:13:34,400 Speaker 2: not something that's taught to us, and it's something we're 248 00:13:34,440 --> 00:13:37,240 Speaker 2: all going to need. Nobody ever told me that it 249 00:13:37,280 --> 00:13:39,160 Speaker 2: was okay to say, you know what, this is not right, 250 00:13:40,559 --> 00:13:43,280 Speaker 2: and so you endure far more than you need to endure. 251 00:13:43,880 --> 00:13:47,080 Speaker 3: She is driving down road it has hazards, but she 252 00:13:47,120 --> 00:13:51,320 Speaker 3: doesn't know the name of the road, and as medical 253 00:13:51,320 --> 00:13:54,719 Speaker 3: issues start piling on to each other, she is determined 254 00:13:54,760 --> 00:13:57,959 Speaker 3: to know what are these obstacles, what road I am on? 255 00:13:58,440 --> 00:14:00,840 Speaker 3: To make sure you make the right term. When the 256 00:14:00,880 --> 00:14:01,920 Speaker 3: turn is there. 257 00:14:08,160 --> 00:14:11,480 Speaker 5: That road is about to become even more hazardous for Nika, 258 00:14:11,880 --> 00:14:15,880 Speaker 5: with a new deadly obstacle materializing out of nowhere. 259 00:14:17,800 --> 00:14:19,160 Speaker 1: I was coming back from Baltimore. 260 00:14:19,560 --> 00:14:22,400 Speaker 2: I was driving on the New Jersey Turnpike and I 261 00:14:22,480 --> 00:14:23,480 Speaker 2: wasn't feeling well again. 262 00:14:23,520 --> 00:14:24,920 Speaker 1: I was having a terrible headache. 263 00:14:25,760 --> 00:14:27,600 Speaker 2: It was like somebody stabbing in the side of the 264 00:14:27,600 --> 00:14:30,720 Speaker 2: head with an ice pick, but on panic, and I 265 00:14:30,760 --> 00:14:32,680 Speaker 2: closed my eyes for a split second, I was in 266 00:14:32,720 --> 00:14:36,600 Speaker 2: the second lane, opened my eyes again and everything was blurry. 267 00:14:37,200 --> 00:14:41,360 Speaker 1: I couldn't see. 268 00:14:42,560 --> 00:14:46,240 Speaker 5: We'll be right back with Symptomatic, a medical mystery podcast. 269 00:14:48,960 --> 00:14:55,000 Speaker 5: Now back to Symptomatic, a medical mystery podcast. Over fifteen 270 00:14:55,080 --> 00:14:57,920 Speaker 5: years out from the starter for Symptoms, Nika has been 271 00:14:57,960 --> 00:15:01,280 Speaker 5: living with a mysterious illness now for over a third 272 00:15:01,320 --> 00:15:05,200 Speaker 5: of her life. She's been taking medication for insulin resistance, 273 00:15:05,560 --> 00:15:10,440 Speaker 5: excess stomach acid, anti nausea pills, anti inflammatories, and a 274 00:15:10,560 --> 00:15:15,960 Speaker 5: slew of painkillers. She's had biopsies, blood tests, MRIs, ultrasounds, 275 00:15:16,320 --> 00:15:22,200 Speaker 5: transophageal echocardiograms, spinal taps, and more, with no clear answer 276 00:15:22,680 --> 00:15:25,920 Speaker 5: as to the root cause of her sickness. It's now 277 00:15:26,080 --> 00:15:28,880 Speaker 5: two thousand and nine and Nica's driving home to New 278 00:15:28,960 --> 00:15:32,160 Speaker 5: York from a book tour in Baltimore when all of 279 00:15:32,160 --> 00:15:35,600 Speaker 5: the sudden, she is hit with unthinkable pain. 280 00:15:39,320 --> 00:15:42,760 Speaker 2: I was driving on the New Jersey Turnpike. It was 281 00:15:42,840 --> 00:15:44,560 Speaker 2: like somebody's stabbing in the side of the head with 282 00:15:44,600 --> 00:15:51,520 Speaker 2: an ice pick, and everything sort of went blurry. I'm 283 00:15:51,560 --> 00:15:54,920 Speaker 2: only like an exit or two away from home, but 284 00:15:55,040 --> 00:15:56,800 Speaker 2: i can't see and I'm in terrible pain. 285 00:15:57,880 --> 00:15:58,360 Speaker 1: Oh my god. 286 00:15:58,400 --> 00:16:02,040 Speaker 2: I know that I'm in trouble here, and I'm starting 287 00:16:02,080 --> 00:16:05,240 Speaker 2: to sort of, you know, have those internal conversations with yourself. 288 00:16:04,920 --> 00:16:05,560 Speaker 1: And I panic. 289 00:16:06,680 --> 00:16:07,880 Speaker 5: Were you terrified? 290 00:16:08,560 --> 00:16:11,360 Speaker 2: Yes, except for I also thought I gotta get somewhere safe, 291 00:16:11,640 --> 00:16:14,120 Speaker 2: so I just gotta keep going. And I don't know 292 00:16:14,120 --> 00:16:16,400 Speaker 2: how to explain it, but somehow I saw the guy's 293 00:16:16,440 --> 00:16:18,960 Speaker 2: break lights in front of me, and something in my 294 00:16:19,000 --> 00:16:21,320 Speaker 2: head said, follow those red lights, and so I followed 295 00:16:21,400 --> 00:16:23,560 Speaker 2: him off of the exit, and it happened to be 296 00:16:24,000 --> 00:16:26,560 Speaker 2: the exit that I needed to Newark. But as soon 297 00:16:26,600 --> 00:16:27,960 Speaker 2: as I got to the ramp, I was like, Okay, 298 00:16:28,040 --> 00:16:30,520 Speaker 2: now I'm on the shoulder and I'm just gonna stop here. 299 00:16:32,760 --> 00:16:35,560 Speaker 2: I stopped, and thankfully my phone was in the cup holder, 300 00:16:35,640 --> 00:16:38,480 Speaker 2: and I called my then boyfriend and said, something is wrong. 301 00:16:38,480 --> 00:16:39,480 Speaker 1: You've got to come get amy. 302 00:16:41,200 --> 00:16:44,160 Speaker 5: What was going through your head? And then minute between 303 00:16:44,280 --> 00:16:49,600 Speaker 5: making that call and having your then boyfriend actually show 304 00:16:49,680 --> 00:16:50,800 Speaker 5: up at the car. 305 00:16:50,920 --> 00:16:53,160 Speaker 2: That's sort of when the panic sets in because you're 306 00:16:53,280 --> 00:16:54,440 Speaker 2: not sure what's happening. 307 00:16:55,120 --> 00:16:57,240 Speaker 1: I was like, am I going blind? There? Like some 308 00:16:57,320 --> 00:16:58,000 Speaker 1: kind of tumor? 309 00:16:58,400 --> 00:17:01,280 Speaker 5: So then I'm sure you go right to the emergency room. 310 00:17:01,520 --> 00:17:01,720 Speaker 4: Right. 311 00:17:01,760 --> 00:17:04,399 Speaker 2: We go to the emergency room. They're like, your blood 312 00:17:04,400 --> 00:17:07,400 Speaker 2: pressure is elevated. So they do the spinal TEP. They 313 00:17:07,440 --> 00:17:10,800 Speaker 2: really don't see anything. We go to my primary care physician, 314 00:17:10,840 --> 00:17:12,560 Speaker 2: he has been with me many years, and he says, 315 00:17:12,600 --> 00:17:16,840 Speaker 2: I think you're having a stroke. I was like, what 316 00:17:16,880 --> 00:17:18,720 Speaker 2: the hell is he talking about a stroke? So I 317 00:17:18,800 --> 00:17:20,600 Speaker 2: do the tests, I do the stress tests and all 318 00:17:20,600 --> 00:17:22,679 Speaker 2: that stuff, and he says, I mean, your blood pressure 319 00:17:22,760 --> 00:17:25,280 Speaker 2: is relatively normal. You probably just need to work out 320 00:17:25,280 --> 00:17:27,680 Speaker 2: more and take this water pill and you'll be good. 321 00:17:29,400 --> 00:17:32,879 Speaker 5: Even after what felt like a near death experience, Nika 322 00:17:33,080 --> 00:17:37,560 Speaker 5: is no closer to understanding the true cause. Doctors have 323 00:17:37,680 --> 00:17:41,920 Speaker 5: now added blood pressure medication, baby aspirin, and a diuretic 324 00:17:42,040 --> 00:17:45,119 Speaker 5: to address what could have been a series of strokes, 325 00:17:45,640 --> 00:17:50,360 Speaker 5: another inconclusive set of symptoms, another handful of pills. 326 00:17:51,600 --> 00:17:55,440 Speaker 4: The biggest challenge, though, I think is underscored by Nika's case, 327 00:17:55,840 --> 00:17:58,679 Speaker 4: and that is getting to the right diagnosis in the 328 00:17:58,680 --> 00:18:02,560 Speaker 4: first place. The disease is like a crow flying through 329 00:18:02,560 --> 00:18:07,280 Speaker 4: the dark night. Patients go months or years. Patients can 330 00:18:07,320 --> 00:18:10,639 Speaker 4: be incurring damage in all of these organs at the 331 00:18:10,640 --> 00:18:15,120 Speaker 4: same time. The issue is not so much difficulty treating 332 00:18:15,160 --> 00:18:19,159 Speaker 4: the disease now as difficulty getting to the right diagnosis. 333 00:18:21,480 --> 00:18:26,240 Speaker 5: As things get worse, symptoms compound, and Nika's ever growing 334 00:18:26,280 --> 00:18:30,320 Speaker 5: list of medication confuses medical professionals who are unaware of 335 00:18:30,359 --> 00:18:33,640 Speaker 5: her history. Mark tries his best to advocate for her 336 00:18:33,680 --> 00:18:38,240 Speaker 5: in situations that require background knowledge of her ongoing health issues. 337 00:18:40,520 --> 00:18:42,880 Speaker 3: Getting her to want to go to the er is 338 00:18:43,040 --> 00:18:48,840 Speaker 3: not an easy task. She's not feeling well, she's in pain. 339 00:18:49,600 --> 00:18:52,840 Speaker 3: So we take her to the hospital that's nearby. We 340 00:18:52,880 --> 00:18:56,680 Speaker 3: get admitted right away and we're going over her medications. 341 00:18:57,080 --> 00:18:59,920 Speaker 3: Almost every medication she takes a for an AWFU label use. 342 00:19:00,600 --> 00:19:04,199 Speaker 3: So we're trying to explain to this nurse that she 343 00:19:04,320 --> 00:19:05,240 Speaker 3: is not a diabetic. 344 00:19:05,880 --> 00:19:07,480 Speaker 1: Don't treat her like a diabetic. 345 00:19:08,280 --> 00:19:09,679 Speaker 5: But no, she's on met formant. 346 00:19:09,680 --> 00:19:12,399 Speaker 3: She has to be a diabetic, and I'm like, she's not. 347 00:19:13,480 --> 00:19:17,040 Speaker 3: All these drugs are taken for all label use, and 348 00:19:17,080 --> 00:19:19,480 Speaker 3: you start running down all her meds and they keep 349 00:19:19,480 --> 00:19:22,120 Speaker 3: thinking it's for what it's normally prescribed for, and we're 350 00:19:22,160 --> 00:19:27,119 Speaker 3: like no, And she gets taken away for testing and 351 00:19:27,160 --> 00:19:31,200 Speaker 3: the police officer assigned to the er comes over and says, 352 00:19:31,200 --> 00:19:34,600 Speaker 3: you have to leave. Leave pardon why do I have 353 00:19:34,640 --> 00:19:37,560 Speaker 3: to leave. My wife is in the back. I'm her 354 00:19:37,560 --> 00:19:41,200 Speaker 3: medical proxy. If any decisions made off any blood's drawn, 355 00:19:41,240 --> 00:19:43,120 Speaker 3: if a band AI's put on her and I haven't 356 00:19:43,160 --> 00:19:45,360 Speaker 3: signed off on it, this is going to be an issue. 357 00:19:46,000 --> 00:19:47,800 Speaker 3: I don't know if he believes me at this point, 358 00:19:47,920 --> 00:19:52,240 Speaker 3: but we go into the waiting room. Ten minutes later, 359 00:19:52,800 --> 00:19:56,439 Speaker 3: Nikka comes out of the er door with her pants on, 360 00:19:56,920 --> 00:20:00,639 Speaker 3: with her gown on but falling off, and the offers like, 361 00:20:00,720 --> 00:20:03,359 Speaker 3: where are you going? You can't leave? She's like, oh, yes, 362 00:20:03,400 --> 00:20:06,640 Speaker 3: I can. I'm allowed to sign myself out at anytime. 363 00:20:07,040 --> 00:20:09,240 Speaker 3: Why is he sitting here? Why is he not in 364 00:20:09,560 --> 00:20:12,639 Speaker 3: the er? And I look and I go told you. 365 00:20:13,520 --> 00:20:17,440 Speaker 3: The officer's like, uh oh, I messed up. Now that's 366 00:20:17,480 --> 00:20:22,480 Speaker 3: an extreme example of advocating, but sometimes that's what you 367 00:20:22,560 --> 00:20:25,199 Speaker 3: have to do. If I'm not there and she can't talk, 368 00:20:25,560 --> 00:20:27,240 Speaker 3: they're going to treat her like she's a diabetic, or 369 00:20:27,280 --> 00:20:29,719 Speaker 3: she's going to treat her like this or that, and 370 00:20:29,720 --> 00:20:31,120 Speaker 3: they're not going to treat it properly. 371 00:20:35,359 --> 00:20:39,320 Speaker 5: Nika is determined to just keep moving, though she's no 372 00:20:39,440 --> 00:20:42,320 Speaker 5: closer to answers. She doesn't want to be held back. 373 00:20:42,840 --> 00:20:47,320 Speaker 5: But this thing continues to rip through her gaining momentum 374 00:20:47,359 --> 00:20:52,720 Speaker 5: and showing up in new and terrifying form. 375 00:20:52,760 --> 00:20:57,080 Speaker 2: Twenty fourteen, everything changes. I wake up one day and 376 00:20:57,160 --> 00:20:59,800 Speaker 2: I have people say, like a goiter looking neck, it's 377 00:20:59,800 --> 00:21:00,399 Speaker 2: like swollen. 378 00:21:00,440 --> 00:21:03,480 Speaker 1: It looks like a bullfrog. And I don't know why. 379 00:21:04,280 --> 00:21:05,800 Speaker 2: And so I go to the doctor and she says, 380 00:21:05,840 --> 00:21:09,560 Speaker 2: you have swollen lyft notes you have ad anopathy, and she. 381 00:21:09,600 --> 00:21:11,640 Speaker 1: Goes, ah, it's not a big deal. You must have some. 382 00:21:11,640 --> 00:21:15,280 Speaker 2: Sort of infection. It'll clear up. And I don't think 383 00:21:15,320 --> 00:21:18,400 Speaker 2: anything of it. And it goes on three months. It 384 00:21:18,480 --> 00:21:22,600 Speaker 2: just stays like that, and then it starts to hurt physically. 385 00:21:22,640 --> 00:21:24,840 Speaker 2: To touch my own face, to wash it in the morning, 386 00:21:25,400 --> 00:21:26,320 Speaker 2: it physically hurt. 387 00:21:26,800 --> 00:21:29,399 Speaker 5: This is the first time that you have something that 388 00:21:29,640 --> 00:21:33,600 Speaker 5: is a physical manifestation of what you're fighting. 389 00:21:34,320 --> 00:21:36,960 Speaker 2: Yeah, something that's really impeding me in a way that 390 00:21:37,000 --> 00:21:38,600 Speaker 2: I realize that I have to do something. 391 00:21:39,359 --> 00:21:41,040 Speaker 1: And I go and I go to a different doctor. 392 00:21:41,119 --> 00:21:42,920 Speaker 2: My doctor is not there that day, and I find 393 00:21:42,920 --> 00:21:45,199 Speaker 2: the person who is on call that day and she 394 00:21:45,280 --> 00:21:48,000 Speaker 2: looks at it and she goes, that's not good. Can 395 00:21:48,040 --> 00:21:50,000 Speaker 2: you go see a friend of mine? And I said, okay, 396 00:21:50,480 --> 00:21:52,359 Speaker 2: he'll see you right now, and I go to his 397 00:21:52,520 --> 00:21:55,520 Speaker 2: office and he says, so, when would you like to 398 00:21:55,520 --> 00:21:58,320 Speaker 2: have surgery? And I was like, I'm a little confused. 399 00:21:58,960 --> 00:22:01,760 Speaker 2: Did she not tell you why you were here? She 400 00:22:01,800 --> 00:22:06,440 Speaker 2: didn't tell you she suspected lymphomo and that was what 401 00:22:06,560 --> 00:22:09,720 Speaker 2: I realized. I was like, whatever this is, it's killing 402 00:22:09,720 --> 00:22:14,239 Speaker 2: me and I need to know what it is. I 403 00:22:14,280 --> 00:22:16,560 Speaker 2: wasn't ready to die. 404 00:22:17,840 --> 00:22:21,080 Speaker 5: How did they explain what was happening to your lymph notes? 405 00:22:21,960 --> 00:22:24,000 Speaker 2: We don't know what they're reacting to, but they're reacting. 406 00:22:24,560 --> 00:22:26,919 Speaker 2: So I have surgery. They take them out, and I 407 00:22:26,920 --> 00:22:29,160 Speaker 2: think I'm all clear, And a year later he goes, 408 00:22:29,240 --> 00:22:30,520 Speaker 2: I need to do this again. 409 00:22:31,840 --> 00:22:33,080 Speaker 1: Because now there are more of them. 410 00:22:34,200 --> 00:22:36,680 Speaker 2: He did three surgeries for that, and then one corrective 411 00:22:36,720 --> 00:22:39,520 Speaker 2: surgery to fix the scar. Now I can go see 412 00:22:39,560 --> 00:22:42,360 Speaker 2: an oncologist or somebody who could tell me what to. 413 00:22:42,280 --> 00:22:42,560 Speaker 1: Do with this. 414 00:22:42,640 --> 00:22:44,480 Speaker 2: And I said, there's really nothing to do. He removed 415 00:22:44,520 --> 00:22:46,680 Speaker 2: the whole thing. You're good, and I was like, I'm 416 00:22:46,720 --> 00:22:50,560 Speaker 2: not good. I need to find an answer then, because 417 00:22:50,600 --> 00:22:52,879 Speaker 2: nobody can still tell me why I had add anopathy 418 00:22:52,880 --> 00:22:56,960 Speaker 2: in the first place. Why am I constantly in a 419 00:22:57,000 --> 00:23:00,240 Speaker 2: state of fighting an infection? Except for I feel the 420 00:23:00,280 --> 00:23:03,199 Speaker 2: same way I always do. I did not want to 421 00:23:03,240 --> 00:23:05,000 Speaker 2: die and I didn't want to be cut up into 422 00:23:05,040 --> 00:23:07,520 Speaker 2: little pieces for the rest of my life. And everybody 423 00:23:07,600 --> 00:23:08,959 Speaker 2: just throw up their hands and go, I don't know. 424 00:23:10,000 --> 00:23:12,000 Speaker 2: That was no longer an acceptable answer to me. 425 00:23:16,640 --> 00:23:21,040 Speaker 5: When Nika activates her dogged search mode, what happens. Does 426 00:23:21,080 --> 00:23:25,119 Speaker 5: she always get an answer to her question? No, is 427 00:23:25,119 --> 00:23:27,639 Speaker 5: that an answer. I'm just going to move around you. 428 00:23:27,720 --> 00:23:29,119 Speaker 3: I'm going to go over you, I'm going to go 429 00:23:29,160 --> 00:23:33,600 Speaker 3: past you. I'm going to get my answer. She will 430 00:23:34,240 --> 00:23:37,600 Speaker 3: hurtle over that obstacle, she will go around that obstacle, 431 00:23:37,680 --> 00:23:40,879 Speaker 3: she will blow up that damn obstacle. She's going to 432 00:23:40,880 --> 00:23:41,760 Speaker 3: find an answer. 433 00:23:43,000 --> 00:23:46,440 Speaker 5: Nica recognizes that the key to finding the root cause 434 00:23:46,480 --> 00:23:49,400 Speaker 5: of her sickness is to gather up the puzzle pieces 435 00:23:49,640 --> 00:23:54,879 Speaker 5: into one box. She contacts every hospital, every doctor, every 436 00:23:54,960 --> 00:23:59,640 Speaker 5: medical testing lab she has ever visited, and organizes all 437 00:24:00,040 --> 00:24:01,040 Speaker 5: for medical records. 438 00:24:01,520 --> 00:24:03,240 Speaker 1: I first started with like our TV doctor. 439 00:24:03,480 --> 00:24:05,800 Speaker 2: So I asked you, so, what kind of doctor would 440 00:24:05,840 --> 00:24:07,520 Speaker 2: deal with like a constant infection? 441 00:24:08,520 --> 00:24:09,480 Speaker 1: Because that's what I was told. 442 00:24:09,560 --> 00:24:13,080 Speaker 2: The ad anopathy came from, Oh, you need an immunologist 443 00:24:13,160 --> 00:24:16,280 Speaker 2: or a rheumatologist. I didn't know those ologists, and so 444 00:24:16,760 --> 00:24:19,200 Speaker 2: I found the Castleton Guide and it said ranks all 445 00:24:19,200 --> 00:24:21,320 Speaker 2: the doctors in hospital the best of the best every 446 00:24:21,359 --> 00:24:23,880 Speaker 2: year because they might be able to know the answers. 447 00:24:25,160 --> 00:24:26,840 Speaker 2: And so I wrote that down, and then I set 448 00:24:26,880 --> 00:24:29,520 Speaker 2: about making an appointment with every single one of them. 449 00:24:29,600 --> 00:24:34,119 Speaker 5: You did something else, which was daunting, given the time 450 00:24:34,240 --> 00:24:38,920 Speaker 5: period you accumulated all of your medical records. 451 00:24:39,320 --> 00:24:41,560 Speaker 2: At that time, they were just starting to do those things. 452 00:24:41,600 --> 00:24:43,920 Speaker 2: You know, now I can connect all different hospitals together. 453 00:24:44,240 --> 00:24:45,960 Speaker 2: We couldn't do that. So, like you said, I had 454 00:24:45,960 --> 00:24:47,919 Speaker 2: a spinal tap at Saint Luke Roosevelt, so I got 455 00:24:48,040 --> 00:24:50,119 Speaker 2: to go there. And I had this done at Saint Mary's. 456 00:24:50,119 --> 00:24:51,680 Speaker 2: So now I got to go there or call there. 457 00:24:51,720 --> 00:24:53,280 Speaker 2: I got to fill out the form. I gotta fax 458 00:24:53,359 --> 00:24:55,160 Speaker 2: it back. I got to wait for them to mail 459 00:24:55,240 --> 00:24:58,480 Speaker 2: me the slides and the CD disc with all your 460 00:24:58,480 --> 00:25:00,840 Speaker 2: images on. People don't realize like back then they used 461 00:25:00,840 --> 00:25:02,600 Speaker 2: to actually give you the actual X rays. It was 462 00:25:02,640 --> 00:25:04,879 Speaker 2: an actual sheet of an X ray with my brain 463 00:25:04,960 --> 00:25:06,480 Speaker 2: on it to show them when I had the tia. 464 00:25:06,560 --> 00:25:08,760 Speaker 2: And this is actually the disc when they did the 465 00:25:08,800 --> 00:25:11,520 Speaker 2: sky out of my belly. So I collected this whole thing, 466 00:25:11,560 --> 00:25:14,720 Speaker 2: and I ended up with this ginormous folder. For the 467 00:25:14,720 --> 00:25:16,520 Speaker 2: first time, it occurred to me, maybe this is all 468 00:25:16,800 --> 00:25:17,520 Speaker 2: sort of one thing. 469 00:25:19,760 --> 00:25:22,760 Speaker 4: Armed with only two or three pieces of that information, 470 00:25:23,400 --> 00:25:26,320 Speaker 4: if it was felt to be reliable, could have made 471 00:25:26,359 --> 00:25:29,880 Speaker 4: all the difference in the world. So it's a terrible 472 00:25:29,960 --> 00:25:35,800 Speaker 4: irony in this world where information flows so freely, in 473 00:25:35,840 --> 00:25:39,960 Speaker 4: many cases, we still have a terrible time getting patients 474 00:25:40,040 --> 00:25:45,800 Speaker 4: medical records across town from one hospital to another, and 475 00:25:46,119 --> 00:25:50,320 Speaker 4: this leads to a real bottleneck, a real roadblock in 476 00:25:50,720 --> 00:25:52,840 Speaker 4: helping patients get to the right diagnosis. 477 00:25:54,440 --> 00:25:57,399 Speaker 5: Nika's research brings her back to the list of the 478 00:25:57,520 --> 00:26:01,480 Speaker 5: ten best roomatologists in New York. The first three don't 479 00:26:01,520 --> 00:26:04,600 Speaker 5: work out, but Nika keeps at it, and she schedules 480 00:26:04,640 --> 00:26:06,960 Speaker 5: in to see doctor number four. 481 00:26:08,119 --> 00:26:10,520 Speaker 2: She had looked at my file beforehand, and some of 482 00:26:10,560 --> 00:26:13,640 Speaker 2: the blood tests and the images that were done, and 483 00:26:13,720 --> 00:26:15,919 Speaker 2: so by the time I had an appointment there, she 484 00:26:15,920 --> 00:26:18,320 Speaker 2: had already had a good idea as to what she 485 00:26:18,440 --> 00:26:21,680 Speaker 2: thought was wrong with me, which was an earth shattering moment. 486 00:26:23,080 --> 00:26:28,600 Speaker 5: Take me to that exact moment, because I cannot imagine 487 00:26:29,359 --> 00:26:33,959 Speaker 5: what that must have been like for you. Seventeen years. 488 00:26:34,240 --> 00:26:34,440 Speaker 1: Yeah. 489 00:26:34,480 --> 00:26:37,880 Speaker 2: It was odd because before she even examined me, she said, well, 490 00:26:38,119 --> 00:26:39,800 Speaker 2: I looked at your file, and I looked at it. 491 00:26:40,040 --> 00:26:41,440 Speaker 1: I think I know what's going on. 492 00:26:41,520 --> 00:26:44,640 Speaker 2: And I thought, hold on every place I've ever been, 493 00:26:45,359 --> 00:26:47,800 Speaker 2: I've given more blood than I probably have in my body. Now, 494 00:26:48,560 --> 00:26:50,600 Speaker 2: all of the tests and all of the doctors, and 495 00:26:50,640 --> 00:26:54,479 Speaker 2: not one person thought to run this one test. And 496 00:26:54,520 --> 00:26:56,520 Speaker 2: she took out a piece of paper, her little pad 497 00:26:56,520 --> 00:27:00,000 Speaker 2: with her name on the top, and she scrolled some weird, 498 00:27:00,160 --> 00:27:02,399 Speaker 2: random collection of letters, and I was like, what is that? 499 00:27:03,280 --> 00:27:05,000 Speaker 2: As she said, it's a rare condition, but I think 500 00:27:05,000 --> 00:27:07,960 Speaker 2: you have that. She wrote down that I have something 501 00:27:08,000 --> 00:27:09,600 Speaker 2: called IgG four rd. 502 00:27:14,240 --> 00:27:17,120 Speaker 5: Do you remember that phone call when she told you 503 00:27:17,200 --> 00:27:18,960 Speaker 5: I have a name for it. I think I know 504 00:27:19,040 --> 00:27:19,480 Speaker 5: what I have. 505 00:27:20,920 --> 00:27:22,920 Speaker 3: Yeah, I would equate it with me being a kid 506 00:27:22,920 --> 00:27:26,680 Speaker 3: at waiting for Christmas gifts. She was as joyous as 507 00:27:26,680 --> 00:27:29,560 Speaker 3: you can be knowing you have a medical condition. But 508 00:27:30,040 --> 00:27:34,919 Speaker 3: not knowing is oh man, not knowing is pain. To 509 00:27:35,040 --> 00:27:39,160 Speaker 3: not know, it's almost a crime against her, it's unfair. 510 00:27:39,760 --> 00:27:42,560 Speaker 3: But to know, to have beaten that, it's almost like 511 00:27:42,600 --> 00:27:45,840 Speaker 3: a victory. I know what this road is called. I 512 00:27:45,880 --> 00:27:48,359 Speaker 3: know what this journey is I know what is wrong 513 00:27:48,400 --> 00:27:51,560 Speaker 3: with me. It's like the mystery of a lifetime. 514 00:27:52,040 --> 00:27:54,120 Speaker 2: It's joy to find out that you know a name, 515 00:27:54,600 --> 00:27:57,439 Speaker 2: but also sadness knowing that nobody else knows what the 516 00:27:57,480 --> 00:27:58,120 Speaker 2: heck this is. 517 00:27:58,280 --> 00:27:59,119 Speaker 1: So now what do we do? 518 00:28:00,960 --> 00:28:03,240 Speaker 2: Nobody else has heard of it, Nobody else knows what 519 00:28:03,240 --> 00:28:06,080 Speaker 2: that means for your life, for your expectancy, your quality 520 00:28:06,119 --> 00:28:07,679 Speaker 2: of life, any of those things. 521 00:28:07,840 --> 00:28:10,360 Speaker 5: Now armed with a name for the condition she's been 522 00:28:10,359 --> 00:28:14,520 Speaker 5: fighting for almost two decades, Nika applies her journalistic skills 523 00:28:14,520 --> 00:28:18,040 Speaker 5: to track its foremost expert, a leader in the field 524 00:28:18,400 --> 00:28:21,879 Speaker 5: who was one of the first doctors to identify IgG 525 00:28:22,000 --> 00:28:26,280 Speaker 5: four related disease in the United States, Doctor John H. Stone. 526 00:28:27,000 --> 00:28:30,720 Speaker 4: I should first say that IgG four is an antibody 527 00:28:31,080 --> 00:28:36,359 Speaker 4: that we all have. In IgG four related disease, levels 528 00:28:36,400 --> 00:28:40,680 Speaker 4: of this antibody often become very, very high. It is 529 00:28:40,760 --> 00:28:47,160 Speaker 4: a multi organ inflammatory disease. It's mediated by the immune system, 530 00:28:47,840 --> 00:28:51,200 Speaker 4: but we don't really know what kicks off the process 531 00:28:51,360 --> 00:28:56,200 Speaker 4: to begin with. It can involve any organ system in 532 00:28:56,240 --> 00:28:59,960 Speaker 4: the body. So, for example, if the pancreas is targeted 533 00:29:00,160 --> 00:29:03,960 Speaker 4: and the pancreas is a major organ then patients can 534 00:29:04,040 --> 00:29:08,840 Speaker 4: become diabetic. If the kidneys are involved, the kidneys can fail. 535 00:29:09,840 --> 00:29:14,120 Speaker 4: If the sinuses are involved, then sinus involvement can lead 536 00:29:14,680 --> 00:29:20,480 Speaker 4: to a great risk of infections, which ultimately can be lethal. 537 00:29:22,080 --> 00:29:24,280 Speaker 4: The word that comes to mind that we use in 538 00:29:24,400 --> 00:29:28,520 Speaker 4: medicine a lot to describe a disease that has many 539 00:29:28,520 --> 00:29:33,240 Speaker 4: faces is protean. It's one of the most protean diseases 540 00:29:33,640 --> 00:29:34,400 Speaker 4: that I know of. 541 00:29:35,720 --> 00:29:40,800 Speaker 5: I imagine it is extremely difficult for pathologists and physicians to 542 00:29:40,880 --> 00:29:43,959 Speaker 5: distinguish it from similar manifesting diseases. 543 00:29:44,160 --> 00:29:48,200 Speaker 4: That's right. IgG four related disease mimics many diseases and 544 00:29:48,320 --> 00:29:52,560 Speaker 4: is mimicked by many diseases. It is remarkable when one 545 00:29:52,600 --> 00:29:56,640 Speaker 4: talks to patients how commonly it comes up that they 546 00:29:56,720 --> 00:30:00,600 Speaker 4: were misdiagnosed as having cancer. They were told they had 547 00:30:01,080 --> 00:30:08,720 Speaker 4: metastatic or inoperable cancer of the pancreas, the lungs, the kidneys, 548 00:30:08,800 --> 00:30:11,520 Speaker 4: or that they had lymphoma, which is a cancer of 549 00:30:11,640 --> 00:30:13,719 Speaker 4: the lymph system. 550 00:30:13,960 --> 00:30:17,680 Speaker 5: What is your role as a leader on the forefront 551 00:30:17,840 --> 00:30:21,240 Speaker 5: of IgG four RG medical treatment. 552 00:30:21,960 --> 00:30:25,440 Speaker 4: Well, I have a history with this disease going back 553 00:30:25,480 --> 00:30:29,520 Speaker 4: eighteen years now, and it wasn't even called IgG four 554 00:30:29,560 --> 00:30:34,240 Speaker 4: related disease. Then it was a couple of years later 555 00:30:34,480 --> 00:30:37,920 Speaker 4: that the world decided IgG four related disease was the 556 00:30:37,920 --> 00:30:43,240 Speaker 4: most appropriate name. With colleagues at Mastheusetsal Hospital, I organized 557 00:30:43,240 --> 00:30:47,280 Speaker 4: the world's first symposium on the disease, held in Boston 558 00:30:47,480 --> 00:30:53,240 Speaker 4: in October of twenty eleven. My group observed very early 559 00:30:53,320 --> 00:30:58,880 Speaker 4: on that B cell depletion was a very effective therapy 560 00:30:58,960 --> 00:31:02,560 Speaker 4: for IgG four related disease. It took a long time 561 00:31:03,000 --> 00:31:07,200 Speaker 4: to convince pharmaceutical industry that we ought to be studying 562 00:31:07,400 --> 00:31:10,880 Speaker 4: B cell depletion in a formal way in a randomized, 563 00:31:10,920 --> 00:31:14,160 Speaker 4: double blind, placebo control trial, and the results of that 564 00:31:14,280 --> 00:31:20,320 Speaker 4: trial proved that B cell depletion was far superior to 565 00:31:20,600 --> 00:31:24,880 Speaker 4: conventional treatment with steroids for the management of patients with 566 00:31:24,880 --> 00:31:26,760 Speaker 4: with IgG four related disease. 567 00:31:28,560 --> 00:31:32,240 Speaker 5: Did it surprise you that it took her seventeen years 568 00:31:32,280 --> 00:31:35,280 Speaker 5: to get a proper diagnosis and why or why not 569 00:31:36,160 --> 00:31:36,760 Speaker 5: it did? 570 00:31:37,240 --> 00:31:41,280 Speaker 4: But I do think given that IgG four related disease 571 00:31:41,440 --> 00:31:45,120 Speaker 4: wasn't even recognized to be a unique diagnosis until two 572 00:31:45,200 --> 00:31:48,560 Speaker 4: thousand and three, and then it was really another four 573 00:31:48,640 --> 00:31:52,160 Speaker 4: or five years before people in the United States began 574 00:31:52,240 --> 00:31:55,640 Speaker 4: to become aware of the condition. I think that goes 575 00:31:55,680 --> 00:31:58,440 Speaker 4: a long way toward explaining why it took such a 576 00:31:58,480 --> 00:32:01,160 Speaker 4: long time, though I think they're probably other reasons too. 577 00:32:01,960 --> 00:32:05,160 Speaker 5: Nika had been battling symptoms for six years before the 578 00:32:05,200 --> 00:32:09,440 Speaker 5: disease was even named, in almost a decade before it 579 00:32:09,520 --> 00:32:10,800 Speaker 5: was known in the US. 580 00:32:11,520 --> 00:32:16,360 Speaker 4: It is an unconscionably long time to wait to come 581 00:32:16,400 --> 00:32:19,880 Speaker 4: to a diagnosis for a disease that is so treatable, 582 00:32:20,040 --> 00:32:21,440 Speaker 4: So it's very unfortunate. 583 00:32:21,840 --> 00:32:25,360 Speaker 5: The diagnosis, to me, is also incredible because from what 584 00:32:25,520 --> 00:32:30,080 Speaker 5: they did know, you didn't exactly fit the stereotype of 585 00:32:30,320 --> 00:32:34,800 Speaker 5: who was being diagnosed with this and at that age, No. 586 00:32:35,040 --> 00:32:37,400 Speaker 2: I was too young, I was too black, I was 587 00:32:37,440 --> 00:32:40,200 Speaker 2: a woman. At that time, they thought it was men 588 00:32:40,360 --> 00:32:44,160 Speaker 2: over white men over fifty Asian men, not certainly not 589 00:32:44,320 --> 00:32:46,959 Speaker 2: black women in their twenties. That was not something that 590 00:32:47,000 --> 00:32:49,520 Speaker 2: most people thought about at all, or women at all. 591 00:32:49,800 --> 00:32:51,560 Speaker 2: And to me, it was even more interesting that it 592 00:32:51,600 --> 00:32:53,520 Speaker 2: was discovered by guy in Boston when I was in 593 00:32:53,560 --> 00:32:54,600 Speaker 2: bosson the whole time. 594 00:32:56,240 --> 00:33:00,800 Speaker 5: Because IgG four rd is still being understood, Nica's treatment 595 00:33:00,840 --> 00:33:04,920 Speaker 5: is constantly evolving, the treatment itself, fairies, depending upon her 596 00:33:04,960 --> 00:33:09,280 Speaker 5: given symptoms at the moment corticosteroid helps during flare ups, 597 00:33:09,560 --> 00:33:12,200 Speaker 5: and an anti rheumatic works to keep them at bay. 598 00:33:12,640 --> 00:33:16,560 Speaker 5: A proton pump inhibitor deals with her gastrointestinal issues, and 599 00:33:16,640 --> 00:33:20,040 Speaker 5: she takes medication to keep her blood pressure and cholesterol low. 600 00:33:20,560 --> 00:33:23,440 Speaker 5: Although Nika is now able to treat her symptoms with 601 00:33:23,520 --> 00:33:27,160 Speaker 5: accuracy and an understanding of the root cause, she still 602 00:33:27,160 --> 00:33:30,920 Speaker 5: has good days and bad days. Mark is there with 603 00:33:31,040 --> 00:33:34,920 Speaker 5: Nica through all of them. Their lasting partnership is a 604 00:33:34,960 --> 00:33:38,400 Speaker 5: walking example of in sickness and in health. 605 00:33:39,360 --> 00:33:41,360 Speaker 2: I said to him that I just wanted to make 606 00:33:41,400 --> 00:33:43,640 Speaker 2: sure that he understood what he was signing up for. 607 00:33:44,000 --> 00:33:47,440 Speaker 2: I don't want to strap somebody with a burden that 608 00:33:47,600 --> 00:33:50,480 Speaker 2: they may not be consciously thinking about. I also wanted 609 00:33:50,520 --> 00:33:51,840 Speaker 2: him to stop and think about it because he had 610 00:33:51,840 --> 00:33:53,480 Speaker 2: a child, And I said, in what you choose for 611 00:33:53,520 --> 00:33:56,600 Speaker 2: yourself is one thing, but now this profoundly changes the 612 00:33:56,640 --> 00:34:00,000 Speaker 2: life of your child to be with somebody who's chronically you, 613 00:34:00,640 --> 00:34:03,000 Speaker 2: because now they have to deal with sometimes Nica can't 614 00:34:03,040 --> 00:34:04,880 Speaker 2: do this, and she can't do that. She's having a 615 00:34:04,920 --> 00:34:07,600 Speaker 2: bad day today. What I learned is the children are 616 00:34:07,680 --> 00:34:10,160 Speaker 2: highly adaptable. His son just got used to it. You 617 00:34:10,200 --> 00:34:12,279 Speaker 2: go get the pills. We made up games to play 618 00:34:12,320 --> 00:34:13,880 Speaker 2: in the bed when I had days when I couldn't 619 00:34:13,880 --> 00:34:14,439 Speaker 2: get out of the bed. 620 00:34:15,640 --> 00:34:16,440 Speaker 5: It's an obstacle. 621 00:34:17,000 --> 00:34:17,760 Speaker 1: It's gonna suck. 622 00:34:18,360 --> 00:34:22,240 Speaker 3: We're gonna get through this, but we're gonna have laughs 623 00:34:22,280 --> 00:34:25,319 Speaker 3: about it. We're gonna joke about it. Occasionally, we're gonna 624 00:34:25,360 --> 00:34:30,040 Speaker 3: cry about it. I have to hide my tears. She's 625 00:34:30,080 --> 00:34:32,400 Speaker 3: got a great smile, especially when you get it out 626 00:34:32,440 --> 00:34:34,799 Speaker 3: of her, especially when she's in pain. I almost made 627 00:34:34,800 --> 00:34:38,520 Speaker 3: it a mission to get her to laugh, to get 628 00:34:38,560 --> 00:34:40,880 Speaker 3: a smile out of her, to dance a little in 629 00:34:40,920 --> 00:34:41,279 Speaker 3: the rain. 630 00:34:42,200 --> 00:34:45,320 Speaker 1: Rain has been in her forecast a little too much, 631 00:34:46,080 --> 00:34:47,399 Speaker 1: so to be ordered to. 632 00:34:47,440 --> 00:34:50,080 Speaker 3: Dance in the rain with her is one of my 633 00:34:51,000 --> 00:34:52,799 Speaker 3: It's one of my guilty pleasures, just to get her 634 00:34:52,920 --> 00:34:55,360 Speaker 3: to laugh when she's down, get it to have some 635 00:34:55,440 --> 00:34:59,400 Speaker 3: fun and circumstance where most people are. 636 00:34:59,239 --> 00:35:00,440 Speaker 1: Like, how could you even matters? 637 00:35:00,440 --> 00:35:01,000 Speaker 4: To have fun. 638 00:35:02,440 --> 00:35:03,520 Speaker 5: It's one of the reasons. 639 00:35:03,280 --> 00:35:04,600 Speaker 4: Why I love her. 640 00:35:05,080 --> 00:35:07,560 Speaker 2: When we finally got married, they wrote about our wedding 641 00:35:07,640 --> 00:35:09,560 Speaker 2: and the wedding section of the New York Times, and 642 00:35:09,600 --> 00:35:11,440 Speaker 2: it said in sickness and health and then a wedding. 643 00:35:11,760 --> 00:35:13,480 Speaker 2: And I always thought of him that way that he 644 00:35:13,560 --> 00:35:17,319 Speaker 2: always understood what those valves were long before we took them, 645 00:35:17,360 --> 00:35:19,879 Speaker 2: because he never flinched about the in sickness part. 646 00:35:20,920 --> 00:35:23,480 Speaker 5: Oh boy, yeah, the sickness part. 647 00:35:24,040 --> 00:35:25,720 Speaker 1: I think a lot of people take that for granted. 648 00:35:26,080 --> 00:35:26,920 Speaker 1: It's a reality. 649 00:35:27,480 --> 00:35:30,759 Speaker 3: You can't make it to the altar and not mean that, 650 00:35:30,840 --> 00:35:33,240 Speaker 3: because you know that's part of the roads you're. 651 00:35:33,120 --> 00:35:42,680 Speaker 5: On, Doctor Stone, What most inspires you or what can 652 00:35:42,719 --> 00:35:46,120 Speaker 5: you leave us with about working with IgG four related 653 00:35:46,160 --> 00:35:48,040 Speaker 5: disease patients? 654 00:35:49,080 --> 00:35:53,520 Speaker 4: I couldn't be more optimistic about the future for people 655 00:35:53,560 --> 00:35:57,560 Speaker 4: living with IgG four related disease now. I think there's 656 00:35:57,600 --> 00:36:01,200 Speaker 4: every reason to believe medical brisk breakthroughs in IgG four 657 00:36:01,239 --> 00:36:04,680 Speaker 4: or late disease are going to continue at a growing 658 00:36:04,800 --> 00:36:08,840 Speaker 4: pace in the very near future. We can understand the 659 00:36:08,840 --> 00:36:12,040 Speaker 4: path of physiology, we can do clinical trials, we can 660 00:36:12,120 --> 00:36:16,960 Speaker 4: get medications approved, but none of that is more important 661 00:36:17,000 --> 00:36:21,160 Speaker 4: than educating people about the condition that they have, helping 662 00:36:21,160 --> 00:36:24,759 Speaker 4: them understand it, and helping them learn to live with it. 663 00:36:24,960 --> 00:36:32,400 Speaker 5: Well, you are so resilient and you have just very quiet, 664 00:36:32,440 --> 00:36:38,719 Speaker 5: strong confidence about the way in which you have navigated 665 00:36:38,760 --> 00:36:43,239 Speaker 5: your health challenges. Nico, what do you want people to 666 00:36:43,280 --> 00:36:44,560 Speaker 5: take away from your story. 667 00:36:45,920 --> 00:36:48,719 Speaker 2: I think what I did learn was from my mother. 668 00:36:49,640 --> 00:36:51,960 Speaker 2: I remember once being like, I'm really sad that this 669 00:36:52,000 --> 00:36:55,000 Speaker 2: is happening, and she said, because you're looking at the 670 00:36:55,000 --> 00:36:57,360 Speaker 2: big picture, why don't you look at the small picture? 671 00:36:57,760 --> 00:36:59,120 Speaker 2: And I said, what's the small picture? 672 00:37:00,080 --> 00:37:01,240 Speaker 1: It's live long enough. 673 00:37:01,920 --> 00:37:03,880 Speaker 2: Just live long enough for today, Live long enough to 674 00:37:03,880 --> 00:37:05,839 Speaker 2: feel better to get up in the morning, Live long 675 00:37:05,920 --> 00:37:07,520 Speaker 2: enough for them to come up with a new medication. 676 00:37:07,960 --> 00:37:10,600 Speaker 2: Live long enough to finish that task that you have, 677 00:37:10,719 --> 00:37:13,719 Speaker 2: maybe not today, but possibly tomorrow. You just have to 678 00:37:13,760 --> 00:37:15,640 Speaker 2: live long enough to get over the next hurdle. 679 00:37:16,560 --> 00:37:17,400 Speaker 1: That's all you have to do. 680 00:37:18,239 --> 00:37:20,319 Speaker 2: And when you take it and bite size morsels, it's 681 00:37:20,360 --> 00:37:23,880 Speaker 2: really possible to see that you can get it all done. 682 00:37:25,040 --> 00:37:28,319 Speaker 2: I can't walk fifteen miles every day, but when we 683 00:37:28,360 --> 00:37:30,200 Speaker 2: went to Lake George, I was able to walk as 684 00:37:30,200 --> 00:37:32,640 Speaker 2: many steps as I needed to have a good day 685 00:37:32,640 --> 00:37:35,640 Speaker 2: with my husband. So I live long enough to just 686 00:37:35,760 --> 00:37:39,440 Speaker 2: enjoy today. I'll worry about tomorrow or tomorrow. 687 00:37:43,560 --> 00:37:47,359 Speaker 5: For more on IgG four related diseases, visit IgG four 688 00:37:47,840 --> 00:37:53,680 Speaker 5: word dot org. That's IgG number four word dot org. 689 00:37:54,080 --> 00:37:56,480 Speaker 5: You can read more about Nika's story in her book 690 00:37:56,600 --> 00:38:00,880 Speaker 5: misdiagnosed the search for doctor house and follow along on 691 00:38:00,960 --> 00:38:03,400 Speaker 5: her website Nicabeeman dot com. 692 00:38:03,880 --> 00:38:07,560 Speaker 2: I'm Nica Beeman van Scheck and I was diagnosed with 693 00:38:07,600 --> 00:38:11,359 Speaker 2: IgG four RD after seventeen year search. 694 00:38:13,120 --> 00:38:17,160 Speaker 5: On next week's episode of Symptomatic. From the moment Halee 695 00:38:17,160 --> 00:38:20,880 Speaker 5: Sanchez started her period, she could tell that something was 696 00:38:21,080 --> 00:38:26,320 Speaker 5: very different. Suffering debilitating minstrel cramps and intense bleeding, Haley 697 00:38:26,400 --> 00:38:29,560 Speaker 5: spent half of every month fighting just to stand up. 698 00:38:29,920 --> 00:38:32,400 Speaker 5: When she joined the Air Force as a medic, Haley 699 00:38:32,560 --> 00:38:36,080 Speaker 5: did not predict how agonizing her symptoms would become. 700 00:38:36,680 --> 00:38:40,160 Speaker 1: I wasn't willing to risk being held back in boot camp, 701 00:38:40,239 --> 00:38:43,160 Speaker 1: so I just kept pushing through. The pain got so 702 00:38:43,360 --> 00:38:46,200 Speaker 1: bad within an instant, it just kind of went black. 703 00:38:47,640 --> 00:38:52,040 Speaker 5: Consistently dismissed by military doctors, Haley suffered in silence for 704 00:38:52,200 --> 00:38:54,840 Speaker 5: years before finally getting the test that would reveal a 705 00:38:54,880 --> 00:38:58,680 Speaker 5: condition so rare that they had never seen it before. 706 00:39:00,239 --> 00:39:02,919 Speaker 5: As always, we would love to hear from you. Send 707 00:39:03,000 --> 00:39:05,640 Speaker 5: us your thoughts on this episode or share a medical 708 00:39:05,640 --> 00:39:10,080 Speaker 5: mystery of your own at Symptomatic at iHeartMedia dot com, 709 00:39:10,120 --> 00:39:14,320 Speaker 5: and please rate and review Symptomatic wherever you get your podcasts. 710 00:39:15,000 --> 00:39:20,480 Speaker 5: We'll see you next time. Until then, be Well. Symptomatic, 711 00:39:20,600 --> 00:39:24,960 Speaker 5: a medical mystery podcast, is a production of iHeartMedia's Ruby Studio. 712 00:39:26,160 --> 00:39:29,920 Speaker 5: Our show is hosted by me Lauren Brightbacheco. Our executive 713 00:39:29,920 --> 00:39:34,400 Speaker 5: producers are James Foster, Matt Ramano, and myself. Our supervising 714 00:39:34,440 --> 00:39:39,839 Speaker 5: producers are Ryan Ovadia, Haley Aliah Ericson, and Daniel Ainsworth. 715 00:39:40,800 --> 00:39:44,880 Speaker 5: This episode was written by Haley Aliah Ericson and edited 716 00:39:44,880 --> 00:39:46,239 Speaker 5: by Daniel Ainsworth.