WEBVTT - Case #29: Cienna 0:00:06.920 --> 0:00:10.560 When I was walking back and I lost my vision, 0:00:10.800 --> 0:00:14.000 it was all gone. I did not know what was 0:00:14.040 --> 0:00:16.200 going on. Nothing like that had ever happened to me 0:00:16.320 --> 0:00:17.119 before in my life. 0:00:17.720 --> 0:00:21.120 Doctors just gave her a timeline of we don't think 0:00:21.160 --> 0:00:23.400 you'll look past your twenty fifth birthday. 0:00:23.440 --> 0:00:29.720 The life becomes so restrictive that the fear that dominates not. 0:00:31.320 --> 0:00:33.200 Becomes unbearable. 0:00:33.880 --> 0:00:37.840 I didn't have these long term dreams or goals because 0:00:37.840 --> 0:00:41.240 there was no long term I was just fighting survive 0:00:41.280 --> 0:00:44.240 every day. 0:00:44.440 --> 0:00:48.200 How terrifying would it be to fight an unknown enemy, 0:00:48.880 --> 0:00:53.040 one you didn't recognize and didn't see coming. What if 0:00:53.120 --> 0:00:56.720 that enemy was coming from within a disease that even 0:00:56.840 --> 0:01:00.959 doctors couldn't identify. Nearly half of my can suffer from 0:01:01.040 --> 0:01:05.480 some chronic illness, and many struggle for an accurate diagnosis. 0:01:06.360 --> 0:01:12.080 These are their stories. I'm Lauren Bray Pacheco and this 0:01:12.400 --> 0:01:13.240 is symptomatic. 0:01:18.640 --> 0:01:21.800 Hi, I've Sienna. If you haven't met me yet, I 0:01:21.840 --> 0:01:25.160 would say that I am a thirty one year old 0:01:25.240 --> 0:01:28.800 disabled girl in the world, just sharing my real life 0:01:29.240 --> 0:01:33.080 so that hopefully people like me see themselves represented and 0:01:33.080 --> 0:01:35.520 feel a little less alone. 0:01:36.120 --> 0:01:39.959 Sienna Deetree is Sunshine in a bottle. She moves through 0:01:39.959 --> 0:01:45.959 life with contagious enthusiasm and undeniable warmth. She is vivacious, creative, 0:01:46.000 --> 0:01:49.640 and talented to boot with a tenacity for squeezing the 0:01:49.760 --> 0:01:53.040 juice out of every lemon. She has a large community 0:01:53.040 --> 0:01:56.080 of followers on social media, where she shares her incredible 0:01:56.120 --> 0:02:02.560 fashion and beautiful energy with her audience. So aside from 0:02:02.600 --> 0:02:08.280 being a social media star, slash influencer, slash advocate, what 0:02:08.400 --> 0:02:10.040 are your loves? What are your passions? 0:02:10.639 --> 0:02:14.560 I love surfing and I've always been obsessed with dogs, 0:02:14.560 --> 0:02:16.480 like I was a little girl at the library who 0:02:16.600 --> 0:02:19.240 checked out all the dog books and rotated between all 0:02:19.280 --> 0:02:22.680 of them. I love the color blue. I love cooking, 0:02:22.800 --> 0:02:27.200 I love reading, I love spending time outside, and I 0:02:27.240 --> 0:02:28.440 also play saxophone. 0:02:28.600 --> 0:02:32.720 Those Siena's true love of life is clearly present. She 0:02:32.760 --> 0:02:36.480 has faced many challenges starting from a very young age. 0:02:36.919 --> 0:02:41.960 Tell me what you remember in terms of your earliest 0:02:42.080 --> 0:02:47.520 memory that something might not have been going well with 0:02:47.639 --> 0:02:48.120 your health. 0:02:49.120 --> 0:02:52.320 I think my earliest memory is I don't remember a 0:02:52.360 --> 0:02:54.720 time when I didn't have migraines, Like I just thought 0:02:55.000 --> 0:02:59.040 everybody had terrible headaches almost every single day. I know 0:02:59.560 --> 0:03:01.640 that my mom will tell me that I'd be crying 0:03:01.720 --> 0:03:03.880 as a baby the middle of the night, or she'd 0:03:03.919 --> 0:03:05.880 come to check on me, and when I was sleeping, 0:03:05.960 --> 0:03:08.480 I'd be purple and she was just like, why my 0:03:08.560 --> 0:03:12.000 baby purple? That doesn't seem normal. But they kind of 0:03:12.040 --> 0:03:15.160 wrote her office of worried first time mom, what would. 0:03:15.000 --> 0:03:20.680 Be the next major symptom that manifested itself in your childhood. 0:03:21.040 --> 0:03:23.639 I remember anytime I would stand up, everything would go black. 0:03:24.040 --> 0:03:26.239 But I thought that was normal, And then I just 0:03:26.280 --> 0:03:28.280 started to think all these other things that I would 0:03:28.400 --> 0:03:32.720 notice were also normal. I would play soccer and my 0:03:32.880 --> 0:03:37.120 legs would get heavy, like I was walking through cement 0:03:37.320 --> 0:03:39.960 or I had cement boots on, and I'd see the 0:03:39.960 --> 0:03:42.000 other kids sitting on the sideline and I was like, oh, 0:03:42.040 --> 0:03:44.080 that's why they went and sat down too. Their legs 0:03:44.160 --> 0:03:47.040 must have been really heavy. So I just assumed everybody 0:03:47.080 --> 0:03:49.080 else had these experiences. 0:03:49.560 --> 0:03:52.800 When was the first time that you remember your parents 0:03:53.000 --> 0:03:56.160 keying in on something not being normal and taking you 0:03:56.200 --> 0:03:56.840 to the doctor. 0:03:57.200 --> 0:04:00.680 My parents were really big about taking me into the pediatrician. 0:04:01.200 --> 0:04:03.160 My mom knew there was something going on, Like in 0:04:03.200 --> 0:04:05.800 my parents' head, I was already the sick kid. So 0:04:05.920 --> 0:04:07.920 they would take me to the doctors and the doctor 0:04:08.120 --> 0:04:11.760 be like, Okay, that's fine, maybe she's gonna get her 0:04:11.800 --> 0:04:15.080 period soon. I'm in like third grade. That was absolutely 0:04:15.120 --> 0:04:17.600 not it. They would just turn it into these other 0:04:17.720 --> 0:04:21.120 things and just kind of like write it all off. Eventually, 0:04:21.480 --> 0:04:23.280 it was just like, what's the point. 0:04:25.279 --> 0:04:28.880 Do you think it's possible that your effufescent personality may 0:04:28.920 --> 0:04:32.680 have in some way worked against you in those interactions 0:04:32.680 --> 0:04:33.359 with doctors? 0:04:33.920 --> 0:04:38.119 Well, definitely, it definitely did. I remember as I got 0:04:38.160 --> 0:04:40.640 older and we'd go to see like specialists, my mom 0:04:40.720 --> 0:04:43.840 be like, so today we're gonna be a little more chill, 0:04:44.240 --> 0:04:46.880 We're gonna look a little more sick. And I was like, 0:04:47.160 --> 0:04:51.039 what come again, Maybe like let them see how sick 0:04:51.160 --> 0:04:54.440 you actually are. Don't tell them about your best days, 0:04:54.560 --> 0:04:58.520 tell them about your worst day. Your worst day needs 0:04:58.560 --> 0:05:00.119 to do what they think every day is like. 0:05:01.680 --> 0:05:05.279 Although Siena spent her childhood in and out of doctors' offices, 0:05:05.720 --> 0:05:09.479 being sick was never something that she felt defined her. 0:05:09.800 --> 0:05:13.240 She had an active social life, she played sports, she 0:05:13.360 --> 0:05:16.400 was a good student, and she mastered the art of 0:05:16.560 --> 0:05:22.080 musical performance. But as she got older, new symptoms started 0:05:22.080 --> 0:05:28.280 to pop up. So things are progressing, the migraines, the lightheadedness, 0:05:28.440 --> 0:05:32.799 the heaviness of the lower body, and even things going 0:05:32.880 --> 0:05:36.640 black when you stood up quickly. And then there was 0:05:36.720 --> 0:05:40.320 the fateful day of marching band practice. What happened? 0:05:41.560 --> 0:05:43.279 I think that was probably one of the scariest days 0:05:43.279 --> 0:05:45.760 of my life. It was before my first day of 0:05:45.880 --> 0:05:48.120 ninth grade. I was going into high school. I was 0:05:48.240 --> 0:05:52.160 very excited but nervous. But I was so excited because 0:05:52.240 --> 0:05:54.840 it was our first day of band practice before going 0:05:54.839 --> 0:05:58.279 away to band camp and I loved playing saxophone. We 0:05:58.320 --> 0:06:00.839 went out to practice on the field. It was perfect. 0:06:00.880 --> 0:06:03.520 I learned about like marching for the first time. I 0:06:03.560 --> 0:06:05.839 was like, this is so cool, This is so fun. 0:06:06.120 --> 0:06:08.200 And then we came inside and I had to go 0:06:08.240 --> 0:06:09.960 to the bathroom, so I was like, cool, put my 0:06:10.000 --> 0:06:12.479 sex phone down, walked over to the bathroom and I 0:06:12.520 --> 0:06:17.200 was walking back and I lost my vision. It was 0:06:17.360 --> 0:06:21.480 all gone, and I did not know what was going on. 0:06:21.600 --> 0:06:23.800 Nothing like that had ever happened to me before in 0:06:23.800 --> 0:06:28.000 my life. It was tunneled. Everything got darker, and then 0:06:28.080 --> 0:06:33.120 it started tunneling out. While everything was darker, I had 0:06:33.160 --> 0:06:37.320 to figure it out. I heard the noise. I'd never 0:06:37.360 --> 0:06:39.279 been in this building before, so I kind of like 0:06:39.320 --> 0:06:42.600 followed along the wall, like touching it. I remember like 0:06:42.760 --> 0:06:46.479 following it back to where I knew the bandroom was. 0:06:47.680 --> 0:06:51.800 I heard my lesson teacher's voice, so I followed that, 0:06:52.360 --> 0:06:54.279 and there was like a little office in the bandroom, 0:06:54.279 --> 0:06:57.080 and I heard her and there apparently I was just 0:06:57.520 --> 0:06:59.719 as pale as could be. My lips were like purple, 0:06:59.800 --> 0:07:02.960 my fingers hands were like purple. She took one luck 0:07:03.000 --> 0:07:05.480 at me and was like, you need to sit down now. 0:07:06.960 --> 0:07:12.040 So I sat down right when she told me to 0:07:12.080 --> 0:07:14.560 sit down, and I actually sat on someone. 0:07:15.320 --> 0:07:16.760 She just happened to sit on me. 0:07:17.440 --> 0:07:18.920 That is Hollie. 0:07:19.080 --> 0:07:21.960 I'd never met her before, but today we're best friends. 0:07:22.320 --> 0:07:24.160 She just sat in the first spot that she thought 0:07:24.240 --> 0:07:26.480 was available, or remembering where there was a couch. 0:07:27.400 --> 0:07:29.880 These two have been able to connect on a level 0:07:30.360 --> 0:07:34.280 more than most because Holly has also struggled with her 0:07:34.360 --> 0:07:37.200 own chronic health conditions. 0:07:37.680 --> 0:07:40.160 I felt invisible for a second, and then we realized, 0:07:40.280 --> 0:07:43.680 oh no, we really didn't understand the full magnitude of 0:07:43.720 --> 0:07:47.360 it that she couldn't see me. We knew she had 0:07:48.120 --> 0:07:52.840 some health scares and health mysteries going on, So sitting 0:07:52.840 --> 0:07:54.360 on me, it was just like I gave her a 0:07:54.440 --> 0:07:56.680 nice big hug and told her to stay there. 0:07:56.960 --> 0:08:00.600 Oh yeah, that's how I met Holly and my vision 0:08:00.720 --> 0:08:01.760 all on the same day. 0:08:02.040 --> 0:08:04.640 Did you go to the doctor after that incident? 0:08:05.000 --> 0:08:07.240 Actually, I called my dad and I think we just 0:08:07.280 --> 0:08:07.840 went home. 0:08:09.760 --> 0:08:13.360 And then after that day what happened. 0:08:15.840 --> 0:08:19.600 As high school went on, I got really sick. Everything 0:08:19.640 --> 0:08:22.480 just started progressing, which was not great timing because that's 0:08:22.480 --> 0:08:24.880 when you're trying out for music schools for college. Is 0:08:24.960 --> 0:08:27.240 your junior year. A lot of doctors were just like, Oh, 0:08:27.280 --> 0:08:29.840 it's stressed. You got big math tests coming up, you 0:08:29.880 --> 0:08:31.800 got a big audition. I was like, I'm excited for 0:08:31.840 --> 0:08:33.840 this audition. I don't know what you're talking about. 0:08:34.200 --> 0:08:37.240 No formal diagnosis is given to you. 0:08:37.720 --> 0:08:39.079 So in the beginning they were just like, oh, it's 0:08:39.120 --> 0:08:45.119 all complex migraines. That's literally everything you're experiencing is complex migraines. 0:08:45.720 --> 0:08:48.959 And then they added epilepsy. Here's a bunch of different 0:08:49.000 --> 0:08:52.000 epileptic drugs. Let's try them all out. So we did, 0:08:52.720 --> 0:08:56.080 and that was somewhere between my junior and senior year 0:08:56.120 --> 0:08:56.840 of high school. 0:08:57.120 --> 0:09:00.160 The reason why you had escorts in high school. Was 0:09:00.320 --> 0:09:01.520 because of the epilepsy. 0:09:01.840 --> 0:09:05.480 I was passing out multiple times a day a lot, 0:09:06.000 --> 0:09:07.360 which is why I had to have people in the 0:09:07.360 --> 0:09:09.520 hallways with me in high school. They actually told my 0:09:09.520 --> 0:09:12.400 parents it was a liability issue at one point, and 0:09:12.640 --> 0:09:14.720 they're like, I couldn't be alone even if I had 0:09:14.720 --> 0:09:18.199 to go to the bathroom. Hey, so, whoever do you 0:09:18.280 --> 0:09:20.640 want to go to the bathroom with me? I gotta go. 0:09:21.120 --> 0:09:23.160 It made me feel terrible as a high schooler, like 0:09:23.440 --> 0:09:26.640 not only did I know literally no one else like me, 0:09:27.360 --> 0:09:31.480 but then you always had to ask other people to 0:09:31.520 --> 0:09:35.360 help you. That wasn't a part of me that I 0:09:35.400 --> 0:09:37.880 was ashamed of either, Like it was just one part 0:09:37.920 --> 0:09:40.200 of me, and it did impact my whole life, but 0:09:40.200 --> 0:09:42.800 it was still just one part of me, like how 0:09:42.840 --> 0:09:43.679 my eyes are brown. 0:09:44.559 --> 0:09:49.840 Somehow, despite debilitating migraines, episodes of heavy legs and arms, 0:09:50.320 --> 0:09:54.520 loss of vision, and fainting, Sienna had become a star 0:09:54.679 --> 0:09:58.520 saxophone player and was made first chair in her high 0:09:58.559 --> 0:10:03.840 school band Take Me to Your Senior year Saxophone concert solo. 0:10:04.520 --> 0:10:08.600 I had been super excited for it. I had been 0:10:08.840 --> 0:10:12.160 dreaming of this moment for years. I'd done tons of competitions. 0:10:12.679 --> 0:10:15.600 I love performing. I'd never had stage frights, so that 0:10:15.760 --> 0:10:20.560 was not part of it. And I got to the 0:10:20.640 --> 0:10:25.559 concert and everything was fine. Then playing the solo, it 0:10:25.679 --> 0:10:32.000 started all falling apart. I played my solo. I was 0:10:32.040 --> 0:10:37.120 smiling afterwards and shaking the director's hand, getting these flowers 0:10:37.280 --> 0:10:41.720 the whole nine yards, and it became hard to smile. 0:10:42.520 --> 0:10:46.080 I couldn't do it, so I went back to my 0:10:46.200 --> 0:10:51.719 seat and it just became harder to move. Everybody else 0:10:51.800 --> 0:10:53.840 left the stage, and I couldn't get up to leave 0:10:53.880 --> 0:10:56.800 the stage. Everything just felt so heavy. So I just 0:10:56.800 --> 0:11:00.600 sat there and the band director me out the side 0:11:00.600 --> 0:11:02.320 of his eye and he came back, and my parents 0:11:02.320 --> 0:11:06.560 came up. Guayaciana still on the stage. I was under 0:11:06.559 --> 0:11:09.079 a cold air duct and I was like, I can't 0:11:09.080 --> 0:11:12.280 get up. Somebody suggested that maybe she didn't have enough 0:11:12.320 --> 0:11:15.320 to eat, so they gave me some really sugary snacks. 0:11:15.559 --> 0:11:18.400 They brought me all these like little cream puffs and things, 0:11:18.480 --> 0:11:23.520 and I like inhaled them and it got worse. My 0:11:23.600 --> 0:11:29.679 parents took me to the er. This is not normal, 0:11:29.960 --> 0:11:33.840 even for you. We went to the er and they 0:11:34.040 --> 0:11:36.440 said I was having a hemiplegic migraine. Because I was 0:11:36.520 --> 0:11:39.880 the migraine kid. They did some stroke checks and things 0:11:39.920 --> 0:11:42.199 like that, but they're like, just go home and take 0:11:42.200 --> 0:11:43.200 your migraine meds. 0:11:43.720 --> 0:11:50.479 You're getting possible diagnosis but no solutions. 0:11:50.840 --> 0:11:53.400 Yeah, they had me on a ton of medication. It 0:11:53.600 --> 0:11:57.080 just wasn't really helping. Even at that point. The migraine 0:11:57.120 --> 0:12:03.000 meds used to have so many side effects. It wasn't great. 0:12:05.120 --> 0:12:08.200 Still battling to make it through the day without passing out, 0:12:08.760 --> 0:12:12.640 Sena went off to Saginaw Valley State University to study 0:12:12.720 --> 0:12:17.319 music education and saxophone performance. Though she was thriving in 0:12:17.400 --> 0:12:22.040 her degree, her symptoms were escalating and becoming more impossible 0:12:22.160 --> 0:12:22.719 to live with. 0:12:23.280 --> 0:12:26.600 I would wake up without vision almost every single day. 0:12:27.120 --> 0:12:29.480 There was also like fifty first dates. There was this 0:12:29.600 --> 0:12:32.880 huge memory loss that came with it. I would write 0:12:32.920 --> 0:12:35.959 down before I went to bed what I did that day, 0:12:36.080 --> 0:12:38.000 so the next morning when I woke up, that's the 0:12:38.000 --> 0:12:40.240 only reason I knew. I kind of came up with 0:12:40.280 --> 0:12:44.680 these systems that helped me navigate it all. I'm going 0:12:44.760 --> 0:12:46.120 to be like this the rest of my life, so 0:12:46.160 --> 0:12:47.319 I got to learn how to do this. 0:12:48.040 --> 0:12:50.880 I know that there was a very specific incident in 0:12:50.920 --> 0:12:54.280 which Triton saved your life. 0:12:54.559 --> 0:12:59.440 Yeah. So I was home for Christmas from college and 0:12:59.559 --> 0:13:03.400 I was taking a shower. My dog, Triton was my shadow. 0:13:03.480 --> 0:13:06.360 He was my show dog, so he went everywhere with me, Like, 0:13:06.400 --> 0:13:08.000 if I went in the bathroom, Triton would be there, 0:13:08.000 --> 0:13:10.880 if I took a shower, Triton would be there. And 0:13:11.240 --> 0:13:15.240 I passed out in the shower when I felt I 0:13:15.360 --> 0:13:21.600 hit my head and it closed the drain, so not good. 0:13:22.280 --> 0:13:29.240 When I came back too, Tryton had gotten partially into 0:13:29.280 --> 0:13:32.800 the shower and was holding my head up out of 0:13:32.840 --> 0:13:39.160 the water. Oh at the time, my primary care doctor, 0:13:39.160 --> 0:13:40.880 that's who I went and saw afterwards, she was like, 0:13:40.920 --> 0:13:43.760 you definitely had like a near death experience, so it 0:13:43.800 --> 0:13:46.920 was super scary. And at the appointment she was like, 0:13:47.120 --> 0:13:49.360 in order to keep doing things independently, I think you 0:13:49.400 --> 0:13:52.720 need to get a service dot. And I didn't really 0:13:52.720 --> 0:13:56.400 even know anything about service dogs at that point. And 0:13:56.480 --> 0:13:58.920 it was funny because at the same time, the girl 0:13:58.960 --> 0:14:03.600 I'd sat on, Hollie, also had developed chronic conditions of 0:14:03.600 --> 0:14:07.120 her own. Well I grew up with mine, she was 0:14:07.120 --> 0:14:09.720 starting to develop hers and was thinking about getting a 0:14:09.760 --> 0:14:10.400 service dog. 0:14:10.600 --> 0:14:13.560 We had both kind of been considering it on our 0:14:13.600 --> 0:14:14.400 own journeys. 0:14:14.520 --> 0:14:17.520 I had shared that, okay, I was going to. 0:14:17.520 --> 0:14:21.840 Be moving home and one of my archery students parents 0:14:21.840 --> 0:14:24.800 had a service dog, and I had jokingly said, well, 0:14:24.840 --> 0:14:28.640 if only there was a passing out dog, and she said, well, 0:14:28.680 --> 0:14:31.640 did you know that's what this dog does. I didn't 0:14:31.640 --> 0:14:33.440 realize that they had service dogs for that. I just 0:14:33.440 --> 0:14:34.920 thought they were searing eye dogs. 0:14:35.240 --> 0:14:38.400 My first service dog was Opie. He is a black Lab. 0:14:38.920 --> 0:14:40.920 He's just a ray of sunshine. You think of the 0:14:41.000 --> 0:14:43.800 lab that's just like a little dorky and super happy. 0:14:43.840 --> 0:14:44.640 That was Opie. 0:14:45.600 --> 0:14:47.440 Did he go back to college with you? 0:14:47.920 --> 0:14:53.960 Yeah. Opie luckily naturally alerted me passing out and actually 0:14:54.000 --> 0:14:57.600 like my vision loss. So he would go to jazz 0:14:57.640 --> 0:15:00.920 band and he was so funny. Professor would go down 0:15:00.960 --> 0:15:03.080 to line and tune and everyone and he didn't even 0:15:03.080 --> 0:15:05.040 have to say anything when people were out tuned because 0:15:05.080 --> 0:15:10.160 this dog put just like er moaning when people were 0:15:10.200 --> 0:15:16.600 out of tune. But I couldn't stop passing out, and 0:15:17.200 --> 0:15:20.440 I got to my saxophone lesson and passed out there. 0:15:21.760 --> 0:15:24.600 I remember, like, see there laying on the floor. Professor. 0:15:24.800 --> 0:15:27.080 She was like, you gotta call your mom. Mom, you 0:15:27.200 --> 0:15:30.800 gotta go to the er. This is not okay. And 0:15:30.840 --> 0:15:33.800 normally when I passed out like more than normal, it 0:15:33.880 --> 0:15:35.360 was because something else was going on. 0:15:36.000 --> 0:15:39.680 Sienna would continue to seek help from her doctors, desperately 0:15:39.720 --> 0:15:44.000 trying to get assistance that would address her increased vision loss, 0:15:44.160 --> 0:15:48.040 feelings of body heaviness, and an uptick in episodes in 0:15:48.120 --> 0:15:50.240 which she would lose consciousness. 0:15:50.600 --> 0:15:54.360 I had a really great primary care doctor all throughout college, 0:15:54.960 --> 0:15:57.000 and she just kept trying to figure out what was 0:15:57.040 --> 0:16:00.000 going on. I went to the er and they said 0:16:00.080 --> 0:16:02.400 that they thought maybe I had an infection or something 0:16:02.480 --> 0:16:05.000 and that's why I was passing out more. And they 0:16:05.040 --> 0:16:06.960 said that they thought my wisdom teeth were coming in. 0:16:07.200 --> 0:16:10.240 And by this point we knew like steroids normally helped 0:16:10.280 --> 0:16:12.920 me if I got into like a bad flare, So 0:16:13.360 --> 0:16:15.880 did the steroids. And then I woke up the next 0:16:15.880 --> 0:16:18.520 morning and I just had this like stabbing in my 0:16:18.560 --> 0:16:21.440 fingers and toes and it traveled all the way like 0:16:21.560 --> 0:16:25.160 up my arms and legs, and as it traveled I 0:16:25.160 --> 0:16:30.120 couldn't move anything anymore. It was so painful. My dad 0:16:30.120 --> 0:16:33.680 had to like pick me up carry me into the er. 0:16:34.960 --> 0:16:37.840 It was terrifying. I thought my wisdom teeth were coming in. 0:16:37.920 --> 0:16:39.840 I thought this was kind of a good thing. This 0:16:39.880 --> 0:16:44.240 is not a good thing, and they just set me 0:16:44.400 --> 0:16:49.760 home the next day. You've got a UTI. It's what 0:16:49.800 --> 0:16:52.320 it is. It's from the UTI. And it wasn't until 0:16:52.360 --> 0:16:54.800 like I think six months later, I got into the 0:16:54.800 --> 0:16:57.360 Cleveland clinic and saw Neural just there and he's like, 0:16:57.400 --> 0:17:00.120 you had gyam Beret. How are you still alive? I 0:17:00.160 --> 0:17:04.119 was like, I don't know. Probably because my primary care 0:17:04.160 --> 0:17:08.320 doctor she started giving me like saline infusions at her office. 0:17:08.960 --> 0:17:12.400 I was in physical therapy. I was just trying everything 0:17:12.440 --> 0:17:15.640 I could, and it was just it was terrifying. 0:17:16.359 --> 0:17:20.440 A quick aside. Guyon Beret syndrome is a rare autoimmune 0:17:20.480 --> 0:17:24.320 disorder in which the body's immune system mistakenly attacks the 0:17:24.400 --> 0:17:29.280 nerves outside the brain and spinal cord. So now you 0:17:29.280 --> 0:17:34.120 have another diagnosis. Are you satisfied now that gyon beret 0:17:34.560 --> 0:17:38.440 is the answer, that this is what's causing everything? 0:17:38.960 --> 0:17:43.159 No one was, No one was. None of my doctors were. 0:17:43.400 --> 0:17:45.840 There was just like all of these suggestions thrown out, 0:17:45.840 --> 0:17:47.760 and I was meeting all of these new doctors and 0:17:47.840 --> 0:17:48.800 all these specialists. 0:17:48.840 --> 0:17:50.960 Do you remember what kind of things are being thrown 0:17:51.000 --> 0:17:52.640 out at this point as possibilities? 0:17:53.560 --> 0:17:57.240 There was just she have a mitochondrial disorder. I was 0:17:57.280 --> 0:18:01.160 sent to endochronology. They realized my bloodsheed would go really 0:18:01.280 --> 0:18:03.760 really low, and it was doing it all the time, 0:18:03.800 --> 0:18:06.440 and it wouldn't go back up. What was going on there? 0:18:06.960 --> 0:18:11.080 I saw a geneticist, we did a full exo, and 0:18:11.119 --> 0:18:13.320 then a couple years later we did the pole genail 0:18:13.320 --> 0:18:16.440 and sequencing. Still have migraines, so that was always there. 0:18:17.480 --> 0:18:19.080 I was just like, I don't really care what I 0:18:19.119 --> 0:18:22.320 have as long as I feel better, That's all I 0:18:22.400 --> 0:18:23.600 cared about. 0:18:25.320 --> 0:18:34.120 Mysteries of meticin sometimes is a hardship to the patient 0:18:34.480 --> 0:18:37.440 and a heartache to the providers. 0:18:39.240 --> 0:18:44.520 That is doctor Betool Hottipoglu, an indocrinologist at University Hospitals. 0:18:45.240 --> 0:18:48.800 Into Chronology is the specialized area of medicine that focuses 0:18:48.840 --> 0:18:52.560 on the indocrine system. They look at glands that produce 0:18:52.640 --> 0:18:58.720 hormones responsible for regulating growth, metabolism, and reproduction. Doctor Huttipoglu 0:18:59.119 --> 0:19:02.160 is often looking for answers that are not yet visible. 0:19:03.080 --> 0:19:07.720 I explain some of these to my patients, telling them 0:19:08.240 --> 0:19:12.840 you do have a bulb inside you, like a bulb 0:19:12.960 --> 0:19:17.040 you put on the soil. You're asking me what this 0:19:17.080 --> 0:19:20.359 is gonna be. I don't know the answer, because what 0:19:20.480 --> 0:19:25.520 I can see, feel, smell is a bulb. I don't 0:19:25.560 --> 0:19:28.520 know what kind of flower that is. So the mystery 0:19:28.800 --> 0:19:36.600 sometimes needs more puzzle pieces together for a person to realize, Aha, that's. 0:19:36.400 --> 0:19:40.320 What you have. But unfortunately it can take a long time. 0:19:41.119 --> 0:19:44.360 When someone presents with an illness from an early age, 0:19:44.800 --> 0:19:49.080 is it easier on some levels to dismiss. 0:19:49.160 --> 0:19:50.960 I'm sure that is true. 0:19:51.040 --> 0:19:56.720 Because medicine so used to seeing younger people to be 0:19:56.880 --> 0:20:04.000 healthier and older we get, they perhaps accept more that 0:20:04.080 --> 0:20:08.240 illnesses will come. And we do have also some differences, 0:20:08.320 --> 0:20:12.600 as you know, especially that sometimes woman is treated at 0:20:12.600 --> 0:20:16.439 bit differently than the men. So we do see that 0:20:16.680 --> 0:20:21.560 dismissal a bit, unfortunately more in a younger and perhaps 0:20:21.640 --> 0:20:24.800 a female than you would have seen it in an 0:20:24.880 --> 0:20:32.400 older generation if the physicians or provider were seeing them. 0:20:32.560 --> 0:20:35.680 By seeing a senior year in college, she wasn't able 0:20:35.720 --> 0:20:39.919 to get through lessons without losing consciousness. Determined to finish 0:20:39.920 --> 0:20:43.320 her degree, she asked her mom to accompany her to 0:20:43.440 --> 0:20:46.800 classes so that she could be supervised in order to 0:20:46.840 --> 0:20:47.680 stay in school. 0:20:49.960 --> 0:20:53.000 My mom drove me an hour up to where I 0:20:53.040 --> 0:20:57.960 went to college, and I went to classes. What's my mom? 0:20:58.680 --> 0:21:03.359 I the things. I took, the tests, I took the exams, 0:21:03.880 --> 0:21:07.439 and then I was seeing my primary care doctor. We 0:21:07.480 --> 0:21:12.480 had this conversation, and you can't keep doing this. You're 0:21:12.680 --> 0:21:16.760 just getting worse. This could be detrimental. You might not 0:21:17.000 --> 0:21:20.359 make it. I just was like, Okay, I'll take a 0:21:20.400 --> 0:21:22.480 semester off, I'll take a medical leave. It's going to 0:21:22.560 --> 0:21:24.439 be fine, and then I'm going to be back. And 0:21:24.520 --> 0:21:27.600 my medical leaf never ended and I never went back. 0:21:29.280 --> 0:21:32.119 That must have been difficult, given how hard you fought. 0:21:33.840 --> 0:21:36.720 I think at the time, I didn't even know really 0:21:36.760 --> 0:21:41.360 who I was without being a saxophonist. That was my identity. 0:21:43.119 --> 0:21:45.680 I was Sienna and I played saxophone. But at the 0:21:45.720 --> 0:21:49.520 same time, my best friend Holly was moving home due 0:21:49.560 --> 0:21:51.920 to her own chronic conditions. 0:21:52.520 --> 0:21:55.760 Was there a time that you remember thinking I could 0:21:55.800 --> 0:21:57.080 lose my best friend. 0:21:57.720 --> 0:21:58.080 Yeah. 0:21:58.119 --> 0:21:58.800 Absolutely. 0:21:59.240 --> 0:22:01.720 There was a time where where doctors just gave her 0:22:02.080 --> 0:22:05.120 a timeline of well, we don't think you'll live past 0:22:05.160 --> 0:22:06.200 your twenty fifth birthday. 0:22:09.600 --> 0:22:14.080 Will be right back with Symptomatic a Medical Mystery Podcast. 0:22:16.440 --> 0:22:20.960 Now back to Symptomatic a Medical Mystery Podcast. At this 0:22:21.119 --> 0:22:24.000 point in her life, Siena has been helped by many 0:22:24.080 --> 0:22:26.720 doctors who have tried their best to understand the cause 0:22:26.720 --> 0:22:30.920 of Sienna's symptoms. She has also been dismissed and misdiagnosed 0:22:30.960 --> 0:22:34.680 more than once. By the time she meets doctor Hattipoglu, 0:22:35.040 --> 0:22:38.719 she's come to accept that the passing out, the vision loss, 0:22:39.040 --> 0:22:42.160 and the heaviness she feels in her body during episodes 0:22:42.400 --> 0:22:45.800 when she can't physically move are maybe never going to 0:22:45.840 --> 0:22:50.080 be understood. But from the moment they meet, Siena and 0:22:50.160 --> 0:22:56.600 doctor Hatipoglu have a beautiful connection. How would you describe 0:22:56.840 --> 0:22:59.359 Sienna to somebody who has not had the pleasure of 0:22:59.400 --> 0:23:00.600 crossing paswths with her? 0:23:01.400 --> 0:23:09.840 She is an amazing human being with determination and love 0:23:09.880 --> 0:23:15.359 of life that she hangs into and never quits. I 0:23:15.480 --> 0:23:23.440 just adore her personality and her way of gentle yet strong. 0:23:24.200 --> 0:23:25.560 That's who she is. 0:23:27.400 --> 0:23:31.399 And then she saw this poster for a lunch and 0:23:31.480 --> 0:23:35.160 learn with Big Pharma Company where they'll teach the doctors 0:23:35.200 --> 0:23:39.040 about the condition and their medication. She thought it sounded 0:23:39.160 --> 0:23:41.800 like me. I think from how I understand how I went, 0:23:42.240 --> 0:23:47.320 and she called me from the lunch and learn you 0:23:47.359 --> 0:23:49.520 have to come see me in Cleveland tomorrow. 0:23:49.960 --> 0:23:53.920