1 00:00:16,558 --> 00:00:17,978 [whirring] 2 00:00:18,059 --> 00:00:19,439 -[woman] You doing okay? -[man] Yes. 3 00:00:19,519 --> 00:00:22,729 [whirring continues] 4 00:00:22,814 --> 00:00:25,984 [Lisa] Being paralyzed can be absolutely terrifying. 5 00:00:26,401 --> 00:00:29,031 It's like your own body is betraying you 6 00:00:29,112 --> 00:00:31,112 at this really fundamental level. 7 00:00:32,615 --> 00:00:33,945 Most of the time, 8 00:00:34,034 --> 00:00:37,374 what's causing a paralysis is pretty obvious. 9 00:00:37,454 --> 00:00:40,544 You've had a stroke, or there's a spinal cord injury. 10 00:00:40,623 --> 00:00:44,173 But sometimes it can be completely invisible, 11 00:00:45,170 --> 00:00:49,130 and that makes those cases very hard to understand. 12 00:00:51,426 --> 00:00:52,546 For this last episode, 13 00:00:53,011 --> 00:00:55,431 what I want to do is look at two patients 14 00:00:55,513 --> 00:00:58,063 who have very different kinds of paralysis. 15 00:00:58,558 --> 00:01:02,478 Both have had to give up careers that they loved because of their condition, 16 00:01:02,896 --> 00:01:04,726 and both live right here in Connecticut, 17 00:01:04,814 --> 00:01:07,984 which means they have access to some of the best doctors in the world, 18 00:01:08,068 --> 00:01:11,358 and still they haven't been able to get a diagnosis. 19 00:01:13,156 --> 00:01:15,366 [man] When you think about the brilliant people 20 00:01:15,450 --> 00:01:18,790 that have looked at me, you turn around and say, 21 00:01:19,037 --> 00:01:21,287 "Boy, this is a real oddball case." 22 00:01:21,372 --> 00:01:26,292 [woman] I've seen 35-plus medical professionals, 23 00:01:26,377 --> 00:01:29,257 and they're not telling me anything. 24 00:01:30,298 --> 00:01:31,628 And I just... 25 00:01:32,217 --> 00:01:34,797 I feel that there's got to be somebody who knows. 26 00:01:58,243 --> 00:01:59,833 [woman] This is gonna be the harder part. 27 00:01:59,911 --> 00:02:00,871 [man] Right. 28 00:02:00,995 --> 00:02:02,655 [beeping] 29 00:02:02,747 --> 00:02:06,077 [woman] I want you to get these up as high as you can on your thighs. 30 00:02:08,211 --> 00:02:09,461 He's gonna do it all on his own. 31 00:02:13,174 --> 00:02:15,894 It's very hard for a paraplegic-- 32 00:02:15,969 --> 00:02:17,799 ...just holding up like that. I'm really... 33 00:02:17,887 --> 00:02:21,517 [woman] This is one of the first steps to getting dressed on his own. 34 00:02:21,599 --> 00:02:22,479 All right, John. 35 00:02:22,559 --> 00:02:24,639 And stay forward. Forward's your friend. 36 00:02:24,727 --> 00:02:27,187 -Always going to say that. -[man] Always stay forward, yeah. 37 00:02:27,272 --> 00:02:28,362 Get them up a little higher. 38 00:02:28,439 --> 00:02:29,569 -Oh, even higher? -Yep. 39 00:02:31,693 --> 00:02:34,953 [man] When this all started, it definitely... 40 00:02:35,697 --> 00:02:37,527 took me by surprise, 41 00:02:37,615 --> 00:02:39,325 and I never thought... 42 00:02:39,868 --> 00:02:42,078 I'd not walk. 43 00:02:42,620 --> 00:02:44,870 It's something I did my whole life. 44 00:02:44,956 --> 00:02:45,996 I'm athletic. 45 00:02:47,667 --> 00:02:49,207 [woman] Now pull that side up. 46 00:02:49,294 --> 00:02:50,304 Yeah! 47 00:02:51,212 --> 00:02:52,052 Good. 48 00:02:52,672 --> 00:02:54,012 [Joe] Two years ago, 49 00:02:54,090 --> 00:02:57,260 I started to get pins and needles in my feet. 50 00:02:58,553 --> 00:03:00,053 It didn't affect my life. 51 00:03:00,180 --> 00:03:02,430 Still was able to do whatever I wanted to do. 52 00:03:02,974 --> 00:03:07,604 I wasn't a burden on my wife or my two daughters. 53 00:03:12,150 --> 00:03:16,280 But then a year later, this numbness went up to my knees. 54 00:03:16,362 --> 00:03:18,912 Now it's progressed farther up, 55 00:03:19,574 --> 00:03:23,664 and all of a sudden, I'm dealing with paraplegia 56 00:03:24,245 --> 00:03:25,705 from my waist down. 57 00:03:26,456 --> 00:03:28,286 Good. And now you can push them off. 58 00:03:29,918 --> 00:03:30,918 [Joe] And... 59 00:03:31,669 --> 00:03:32,919 unfortunately... 60 00:03:34,005 --> 00:03:35,375 I have incontinence. 61 00:03:39,385 --> 00:03:44,135 A few months ago, they did a procedure to try to figure out my neuropathy. 62 00:03:45,183 --> 00:03:46,433 Unfortunately, 63 00:03:46,517 --> 00:03:49,437 it just happened to cause a terrible blood clot, 64 00:03:49,520 --> 00:03:52,730 and then, all of a sudden, my body crashed. 65 00:03:52,815 --> 00:03:54,225 My organs shut down. 66 00:03:54,692 --> 00:03:55,862 They called the priest. 67 00:03:55,944 --> 00:03:58,664 -[woman] That night was very scary. -Right. 68 00:03:58,738 --> 00:04:00,868 We didn't know whether you were gonna make it. 69 00:04:01,032 --> 00:04:03,582 The doctors revived me, 70 00:04:04,327 --> 00:04:05,197 and... 71 00:04:06,162 --> 00:04:09,832 you know, I'm alive to talk about it. Um... 72 00:04:10,458 --> 00:04:14,378 But the next three months, I was in the hospital. 73 00:04:15,004 --> 00:04:17,344 I just had to get better, had to get healthier. 74 00:04:17,423 --> 00:04:18,383 So, 75 00:04:18,925 --> 00:04:21,465 I haven't been home in... 76 00:04:22,971 --> 00:04:23,971 five months. 77 00:04:26,557 --> 00:04:27,727 [woman] It's very scary. 78 00:04:27,976 --> 00:04:31,016 All of the doctors really don't have any diagnosis. 79 00:04:32,605 --> 00:04:34,605 We've gone long distances. 80 00:04:34,691 --> 00:04:36,861 We haven't just gone to one doctor. 81 00:04:37,819 --> 00:04:38,739 [Joe] Okay. 82 00:04:38,820 --> 00:04:44,410 I guess I am an enigma because we went to Mayo, Yale, and Boston, 83 00:04:44,492 --> 00:04:48,662 and as a healthcare provider and a dentist, 84 00:04:48,746 --> 00:04:53,166 I'm a firm believer in Western medicine. 85 00:04:53,751 --> 00:04:57,421 I think we're blessed to have the technology 86 00:04:57,505 --> 00:05:00,505 and the brilliant doctors that we have in this country. 87 00:05:00,591 --> 00:05:02,721 So, if they can't figure it out... 88 00:05:04,637 --> 00:05:06,427 how am I gonna figure it out? 89 00:05:09,309 --> 00:05:12,939 [woman] So, have we been around for a really long time on this planet? 90 00:05:13,021 --> 00:05:14,941 [girl] No. Plants are the oldest thing 91 00:05:15,023 --> 00:05:16,573 -on this planet. -[woman] Yeah. 92 00:05:16,816 --> 00:05:20,066 These first plants, they were single-celled organisms. 93 00:05:20,153 --> 00:05:22,953 -[girl] Single-celled? -They were kind of a bunch of slime. 94 00:05:23,448 --> 00:05:25,068 [laughing] 95 00:05:25,158 --> 00:05:27,868 That's pretty much what it was, is this slime. 96 00:05:27,952 --> 00:05:29,792 Like, when we go down to the brook, okay, 97 00:05:30,288 --> 00:05:33,708 and there's, like, that mucky sort of slimy stuff? 98 00:05:33,791 --> 00:05:36,541 That's kind of what all the first life was like. 99 00:05:36,836 --> 00:05:40,586 But there were little teeny-tiny things that were able to thrive. 100 00:05:40,673 --> 00:05:42,683 Now they're super big. 101 00:05:42,759 --> 00:05:45,089 -Mammals. -Mammals. 102 00:05:46,220 --> 00:05:48,600 I'm dealing with an undiagnosed condition 103 00:05:49,349 --> 00:05:51,099 where, um... 104 00:05:52,310 --> 00:05:55,520 any part of the right side of my body, 105 00:05:55,605 --> 00:05:57,855 from my feet up to my face, 106 00:05:57,940 --> 00:06:00,940 can give out at any point in time with no warning. 107 00:06:02,028 --> 00:06:05,158 And usually my face will start melting. 108 00:06:13,581 --> 00:06:15,831 [sighing] Okay, so... 109 00:06:18,586 --> 00:06:19,836 There are times when... 110 00:06:20,630 --> 00:06:22,340 my hand will just kind of curl up, 111 00:06:22,423 --> 00:06:25,223 and I call it my T-Rex arm. 112 00:06:25,301 --> 00:06:28,891 It just kind of curls up in this weird way up here, 113 00:06:28,971 --> 00:06:30,971 and I'd have to manually undo it. 114 00:06:31,849 --> 00:06:33,809 [girl] Just one squirt of Dijon, right? 115 00:06:33,893 --> 00:06:34,983 [Ann] One squirt of Dijon, 116 00:06:35,061 --> 00:06:38,061 but you should put that on after you put on the cheese. 117 00:06:39,107 --> 00:06:40,357 Stairs scare me. 118 00:06:41,359 --> 00:06:47,029 I'm afraid that I'm gonna lose the ability to figure out where my foot is in space, 119 00:06:47,407 --> 00:06:49,697 and it's gonna get caught on the edge of the steps 120 00:06:49,784 --> 00:06:51,544 and I'm gonna go tumbling. 121 00:06:52,328 --> 00:06:55,418 I have actually fallen... 122 00:06:56,457 --> 00:06:58,417 um, on several occasions. 123 00:07:00,002 --> 00:07:02,052 -Drink your juice, Mom. -Yes, baby. 124 00:07:02,672 --> 00:07:05,092 [girl] It sometimes can be scary. 125 00:07:05,842 --> 00:07:09,472 Like, when Mommy's on the floor, it's very scary. 126 00:07:10,847 --> 00:07:12,307 I have to call Daddy, 127 00:07:12,557 --> 00:07:14,887 and it makes me cry. A lot. 128 00:07:18,563 --> 00:07:20,443 The hardest part is... 129 00:07:22,483 --> 00:07:24,493 that that's my... 130 00:07:26,028 --> 00:07:30,488 life partner, and it's hard to see her in pain. 131 00:07:31,701 --> 00:07:33,491 I love that lady, though. I do. 132 00:07:33,578 --> 00:07:36,368 I just want her to feel better. 133 00:07:42,378 --> 00:07:45,088 [Ann] So, yeah, we're not able to do a lot of the... 134 00:07:45,965 --> 00:07:48,585 deep sort of forest stuff that we used to do, 135 00:07:49,343 --> 00:07:51,723 looking for edible plants and foraging, 136 00:07:52,722 --> 00:07:56,102 mostly because I don't feel safe going out into the woods 137 00:07:57,059 --> 00:07:58,809 'cause I don't know what's gonna happen. 138 00:08:00,688 --> 00:08:02,898 It all started two years ago 139 00:08:03,649 --> 00:08:05,939 with pain in my chest, 140 00:08:06,027 --> 00:08:09,407 heartburn, which I had never had problems with before. 141 00:08:10,823 --> 00:08:12,073 Within a month, 142 00:08:12,575 --> 00:08:15,865 I started to notice that my face was changing. 143 00:08:15,953 --> 00:08:17,913 Like, I'd look in the mirror and I'd be like, 144 00:08:17,997 --> 00:08:20,707 "Hmm, that's weird. My lip is weird." 145 00:08:21,542 --> 00:08:22,962 And I talked to my doctor. 146 00:08:23,044 --> 00:08:26,384 He's like, "You have full facial paralysis on the right side." 147 00:08:26,881 --> 00:08:28,931 He's like, "You need to go to the emergency room. 148 00:08:29,008 --> 00:08:30,428 You might be having a stroke." 149 00:08:32,178 --> 00:08:35,138 So, I get into the car, and I'm not really worried about it 150 00:08:35,223 --> 00:08:40,193 until I get on the highway and my eye on the right side shut. 151 00:08:40,561 --> 00:08:42,941 "Oh, my gosh! Why isn't it opening?" 152 00:08:43,022 --> 00:08:45,442 And I could feel my eyelid fluttering. 153 00:08:46,359 --> 00:08:48,779 I couldn't open it to save my life, 154 00:08:49,654 --> 00:08:54,034 and I'm out in traffic, trying to merge in traffic, and now I'm scared. 155 00:08:55,034 --> 00:08:58,044 I got to the emergency room, and the thing that was happening 156 00:08:58,871 --> 00:09:00,331 is that facial paralysis, 157 00:09:00,414 --> 00:09:04,464 that full facial paralysis that I had coming in was coming... 158 00:09:05,294 --> 00:09:06,174 and going. 159 00:09:06,420 --> 00:09:08,380 Well, they put me into the stroke ward, 160 00:09:08,756 --> 00:09:11,086 and they gave me a CAT scan, 161 00:09:11,592 --> 00:09:13,052 which came up negative. 162 00:09:13,135 --> 00:09:14,795 They gave me an MRI, 163 00:09:15,096 --> 00:09:16,096 which came up negative. 164 00:09:16,180 --> 00:09:18,430 And the other neurologist came in 165 00:09:18,516 --> 00:09:21,056 and was just like, "Well, you know... 166 00:09:21,936 --> 00:09:23,596 I think you're just stressed. 167 00:09:24,647 --> 00:09:26,857 I think all of this is just stress. 168 00:09:26,941 --> 00:09:28,941 You're just... It's just psychosomatic." 169 00:09:31,028 --> 00:09:32,028 Really. 170 00:09:32,488 --> 00:09:34,068 Being a person of color, 171 00:09:34,949 --> 00:09:36,949 people tend not to take you seriously. 172 00:09:37,702 --> 00:09:42,002 In fact, I feel like every woman in this country 173 00:09:42,665 --> 00:09:46,125 knows what it's like to be pooh-poohed by a doctor 174 00:09:46,210 --> 00:09:48,000 'cause it's happened to, I would say, 175 00:09:48,087 --> 00:09:51,877 and I don't think I'm exaggerating when I say every woman in this country, 176 00:09:51,966 --> 00:09:53,376 at least once. 177 00:09:55,303 --> 00:09:57,853 This is the reason why I don't trust doctors. 178 00:10:01,892 --> 00:10:03,892 [dog barking] 179 00:10:07,648 --> 00:10:10,778 [Lisa] It was very clear to me when I first got to know Joe and Ann 180 00:10:11,319 --> 00:10:15,319 that their attitudes about the medical community were quite different. 181 00:10:16,240 --> 00:10:18,240 I understand Ann's point of view. 182 00:10:18,784 --> 00:10:20,244 We often hear 183 00:10:20,328 --> 00:10:26,828 that women, because most doctors are men, women feel like they're not really seen. 184 00:10:26,917 --> 00:10:31,167 People of color, because in this country, most doctors are white... 185 00:10:31,547 --> 00:10:34,717 So, people of color often feel not heard. 186 00:10:34,800 --> 00:10:36,390 So, the question becomes, 187 00:10:36,469 --> 00:10:39,929 is it possible that Ann's distrust of the medical community 188 00:10:40,306 --> 00:10:45,476 would affect her ability to accept observations from that community 189 00:10:45,561 --> 00:10:47,861 simply because she doesn't trust them? 190 00:10:48,564 --> 00:10:50,404 Joe, on the other hand, 191 00:10:50,483 --> 00:10:52,653 is actually a part of the medical profession. 192 00:10:52,985 --> 00:10:56,315 He has been a dentist for, you know, many years. 193 00:10:56,405 --> 00:10:58,485 Joe is the very definition of a good patient. 194 00:10:58,574 --> 00:11:03,704 I mean, he actually was almost killed by the doctors trying to take care of him. 195 00:11:03,788 --> 00:11:06,168 But it didn't keep him from trusting them enough 196 00:11:06,248 --> 00:11:09,628 to go back to them and say, "Okay, what else you got?" 197 00:11:12,088 --> 00:11:13,708 In searching for a diagnosis, 198 00:11:13,798 --> 00:11:19,758 both Ann and Joe have collected long lists of diseases they don't have. 199 00:11:20,763 --> 00:11:24,143 Joe's doctors have already ruled out multiple sclerosis. 200 00:11:24,558 --> 00:11:26,638 It's not Parkinson's disease. 201 00:11:26,727 --> 00:11:29,437 It's not a whole bunch of these autoimmune diseases 202 00:11:29,522 --> 00:11:30,732 that they've thought about. 203 00:11:32,483 --> 00:11:35,953 At this point, Ann has seen over 30 doctors 204 00:11:36,028 --> 00:11:40,778 and, really, so many of the most obvious causes have been ruled out. 205 00:11:40,866 --> 00:11:42,276 It's not a seizure. 206 00:11:42,785 --> 00:11:44,825 She doesn't have multiple sclerosis. 207 00:11:45,496 --> 00:11:47,156 It's not lupus. 208 00:11:47,415 --> 00:11:51,535 And now both Joe and Ann are really desperate for a diagnosis. 209 00:11:51,627 --> 00:11:54,507 Ann's paralysis can happen anytime, 210 00:11:55,131 --> 00:11:56,091 anywhere. 211 00:11:57,007 --> 00:11:59,337 Joe's is constant, 212 00:11:59,427 --> 00:12:01,047 but it's been progressive, 213 00:12:01,137 --> 00:12:05,097 and neither Joe nor even his doctors have any idea 214 00:12:05,182 --> 00:12:07,442 where this paralysis is going to stop, 215 00:12:07,518 --> 00:12:10,018 and I know that worries Joe and his family. 216 00:12:26,746 --> 00:12:30,826 [Linda] He tries not to show it, but there are times that he'll tell me, 217 00:12:31,459 --> 00:12:32,589 "I'm really scared." 218 00:12:32,668 --> 00:12:36,628 [woman] Yeah. He doesn't like to talk about it because there's so many unknowns. 219 00:12:36,922 --> 00:12:38,222 You don't know whether... 220 00:12:39,300 --> 00:12:42,850 you know, whether it is gonna continue to get worse 221 00:12:42,928 --> 00:12:45,968 or what's happening, you know. Like, is it gonna... 222 00:12:46,056 --> 00:12:49,806 If it's moving up, is it gonna take over his heart area? 223 00:12:54,190 --> 00:12:56,730 [beeping] 224 00:12:56,817 --> 00:12:57,817 All right. 225 00:12:59,904 --> 00:13:02,914 [Linda] I don't like to think of some of those scarier things 226 00:13:02,990 --> 00:13:04,120 that could happen. 227 00:13:04,658 --> 00:13:06,908 You never want to miss a day. 228 00:13:06,994 --> 00:13:11,174 Any day that you can do something, you have to move. 229 00:13:11,248 --> 00:13:14,458 You know, you have to keep using what you can while you have it. 230 00:13:16,003 --> 00:13:18,343 [woman 2] I think we've all seen a change in him, though. 231 00:13:18,422 --> 00:13:20,092 This has not been easy for him. 232 00:13:20,174 --> 00:13:21,974 He's not somebody that likes to... 233 00:13:22,718 --> 00:13:25,598 sit around and, um... 234 00:13:26,514 --> 00:13:29,064 just, you know... I don't know. 235 00:13:29,141 --> 00:13:32,021 He's a positive person, and so he tries to be upbeat, 236 00:13:32,102 --> 00:13:36,112 but I think, like, his work was his life, and he can't work. 237 00:13:36,857 --> 00:13:40,737 [Linda] Joe has always been a fairly big, strong guy. 238 00:13:41,362 --> 00:13:43,162 He was a dentist, 239 00:13:43,239 --> 00:13:44,659 everybody knew him as that, 240 00:13:44,740 --> 00:13:48,080 and to have to give that up was really hard for him. 241 00:13:49,578 --> 00:13:53,498 [Joe] Being, you know, the neighborhood dentist, Dr. Joe... 242 00:13:53,582 --> 00:13:55,712 A lot of great times taking care of people. 243 00:13:56,210 --> 00:13:59,170 It's been a good ride. That's why it was hard to give it up. 244 00:14:00,548 --> 00:14:03,508 It was a rough first year. 245 00:14:03,592 --> 00:14:07,892 I was in a wheelchair, but I could still transfer to a toilet, 246 00:14:08,472 --> 00:14:10,472 or transfer into the car. 247 00:14:11,308 --> 00:14:14,688 But when I finally developed incontinence, 248 00:14:15,604 --> 00:14:19,984 then I thought it was gonna be much harder to try to function, 249 00:14:20,067 --> 00:14:22,317 and I said, "All right, I've gotta take care of my health, 250 00:14:22,403 --> 00:14:24,033 and I can't be worrying about... 251 00:14:25,030 --> 00:14:26,200 dentistry." 252 00:14:28,200 --> 00:14:30,700 I had a hard time grappling with it. 253 00:14:31,829 --> 00:14:33,209 I can't mow the lawn. 254 00:14:33,289 --> 00:14:35,249 I can't go for a boat ride. 255 00:14:37,042 --> 00:14:39,132 If it wasn't for my girls, 256 00:14:40,504 --> 00:14:43,724 [stammering] I don't think I would have... You know... 257 00:14:44,300 --> 00:14:46,840 I wouldn't be as positive as I am, that's for sure. 258 00:14:48,095 --> 00:14:50,385 It's a crazy emotional roller coaster. 259 00:14:57,855 --> 00:14:59,685 [Lisa] Looking through Joe's medical records, 260 00:14:59,773 --> 00:15:04,453 it became clear that his case was much more complicated than I initially thought 261 00:15:04,528 --> 00:15:09,408 because, as it turns out, he has not one serious medical problem 262 00:15:09,867 --> 00:15:12,287 but two at the same time. 263 00:15:12,369 --> 00:15:15,119 First of all, he has this very strange paralysis, 264 00:15:15,205 --> 00:15:18,915 which is a type of peripheral neuropathy. 265 00:15:19,001 --> 00:15:20,591 It's a problem with the nerves. 266 00:15:21,086 --> 00:15:23,206 But also, about 15 years ago, 267 00:15:23,297 --> 00:15:27,507 Joe was diagnosed with a progressive and incurable blood cancer 268 00:15:27,593 --> 00:15:30,893 called Waldenstrom's macroglobulinemia. 269 00:15:30,971 --> 00:15:34,811 Waldenstrom's. They thought he only had a few years to live. 270 00:15:35,434 --> 00:15:37,854 [Joe] They started me on this clinical trial, 271 00:15:37,937 --> 00:15:40,397 and then, long story short, 272 00:15:40,481 --> 00:15:42,731 I got lucky and I stayed alive. 273 00:15:42,816 --> 00:15:45,526 Everything was good. Taking my medicine. 274 00:15:45,611 --> 00:15:49,071 I thought I had this licked, then, all of a sudden, 15 years later, 275 00:15:49,156 --> 00:15:53,826 this neuropathy comes out of the blue and my life as it was... 276 00:15:54,578 --> 00:15:55,998 totally changed. 277 00:15:57,414 --> 00:15:59,714 [Lisa] I have to dig a little deeper in his records 278 00:15:59,792 --> 00:16:04,342 to see if his cancer, his Waldenstrom's, 279 00:16:04,421 --> 00:16:08,721 is in any way connected to this neuropathy or paralysis. 280 00:16:09,760 --> 00:16:14,220 Recently, he's developed a little bit of sensation in his toes, 281 00:16:14,306 --> 00:16:17,016 so it's not clear what's happening there. 282 00:16:17,309 --> 00:16:18,389 [Joe] I don't get it. 283 00:16:18,477 --> 00:16:22,977 You know, how come I'm wiggling my toes if I can't move my legs? 284 00:16:23,774 --> 00:16:26,494 [Lisa] I hope that there's somebody out there in the crowd 285 00:16:26,568 --> 00:16:28,818 who can put these pieces of the puzzle together. 286 00:16:30,698 --> 00:16:32,118 "Certainly, when Joe, 287 00:16:32,199 --> 00:16:34,239 a dentist in Fairfield, Connecticut, 288 00:16:34,326 --> 00:16:37,706 first noticed the feeling of pins and needles in his feet, 289 00:16:37,788 --> 00:16:42,958 he had no idea that he would be struggling to walk just a year and a half later. 290 00:16:44,086 --> 00:16:46,086 What do you think is going on with Joe?" 291 00:16:46,797 --> 00:16:50,177 I have paraplegia from my waist down... 292 00:16:50,259 --> 00:16:52,929 I am a doctoral student here at the Harvard School of Public Health. 293 00:16:53,012 --> 00:16:55,352 I am a board-certified neurologist. 294 00:16:55,431 --> 00:16:58,851 I'm a graduate student at Columbia studying nutrition. 295 00:16:58,934 --> 00:17:03,314 What caught my interest in the article about Joe was similar symptoms. 296 00:17:03,397 --> 00:17:07,817 His journey and his illness immediately reminded me of my own mother. 297 00:17:07,901 --> 00:17:12,241 The article was shared on an online chat group of Waldenstrom's patients. 298 00:17:12,322 --> 00:17:16,992 It rang a bell, of course, because I have the same Waldenstrom thing 299 00:17:17,077 --> 00:17:19,247 and the same neuropathy thing. 300 00:17:19,329 --> 00:17:21,369 [woman] There's an entity called 301 00:17:21,457 --> 00:17:23,827 progressive multifocal leukoencephalopathy. 302 00:17:24,084 --> 00:17:26,594 And finally the diagnosis of my patient 303 00:17:26,670 --> 00:17:29,880 is a condition we call transverse myelitis. 304 00:17:30,215 --> 00:17:33,085 Her doctor said that she had 305 00:17:33,177 --> 00:17:36,717 a rare variation of Guillain-Barré syndrome, 306 00:17:36,805 --> 00:17:39,475 and it's called CIDP, 307 00:17:39,558 --> 00:17:44,808 which stands for chronic inflammatory demyelinating polyneuropathy. 308 00:17:44,897 --> 00:17:47,357 I think the medication he's on for his cancer 309 00:17:47,441 --> 00:17:51,781 is controlling whatever other disease is going on. 310 00:17:51,862 --> 00:17:55,532 Ibrutinib, which is the drug he's using, and it's a miracle drug for him, 311 00:17:55,741 --> 00:17:59,751 but ibrutinib has not really been studied that extensively 312 00:17:59,828 --> 00:18:01,788 in terms of these kinds of side effects. 313 00:18:01,872 --> 00:18:03,082 It's fairly new, 314 00:18:03,165 --> 00:18:07,995 and I don't think anybody knows what's going to happen with that drug. 315 00:18:08,087 --> 00:18:11,167 A lot of people have peripheral neuropathy, 316 00:18:11,256 --> 00:18:13,006 but a lot of people don't have anything. 317 00:18:13,092 --> 00:18:14,552 It's pretty scary. 318 00:18:14,635 --> 00:18:16,135 I wish you the best of luck. 319 00:18:16,512 --> 00:18:20,682 I hope something is found that will help him and make his life better. 320 00:18:20,766 --> 00:18:22,476 Never, ever, ever give up. 321 00:18:24,228 --> 00:18:27,688 [Lisa] The two most interesting possibilities from the crowd 322 00:18:27,773 --> 00:18:32,193 were either chronic inflammatory polyneuropathy, CIDP, 323 00:18:32,277 --> 00:18:35,527 or a side effect of the ibrutinib, 324 00:18:35,614 --> 00:18:38,744 the medicine he was taking to treat his blood cancer. 325 00:18:38,826 --> 00:18:42,696 The most popular suggestion was CIDP. 326 00:18:42,788 --> 00:18:45,668 It's a neurologic disorder caused by an injury 327 00:18:45,749 --> 00:18:48,089 to the protective coating that surrounds nerves 328 00:18:48,168 --> 00:18:50,548 as they go from the brain to the periphery. 329 00:18:50,796 --> 00:18:53,216 However, Joe's doctors are certain 330 00:18:53,298 --> 00:18:56,798 that he doesn't have Guillain-Barré or CIDP. 331 00:18:57,427 --> 00:18:59,387 The other theory from the crowd 332 00:18:59,471 --> 00:19:03,141 was that Joe's paralysis might be a rare side effect 333 00:19:03,225 --> 00:19:06,595 of a medication he's been taking for this cancer, ibrutinib. 334 00:19:07,563 --> 00:19:10,823 Side effects of ibrutinib could be a possibility. 335 00:19:11,984 --> 00:19:15,654 [Lisa] Interestingly, currently Joe's not taking the ibrutinib. 336 00:19:15,737 --> 00:19:19,117 He had to stop it when that blood clot just about killed him, 337 00:19:19,408 --> 00:19:22,368 and his doctors at Yale tell him that he needs 338 00:19:22,452 --> 00:19:25,372 to stay off it until he recovers fully. 339 00:19:25,831 --> 00:19:28,791 [man] Joe went on a clinical trial for ibrutinib, 340 00:19:28,876 --> 00:19:33,086 which significantly helped him for many, many years. Um... 341 00:19:33,172 --> 00:19:37,262 And he really continued it until he had this very prolonged hospitalization. 342 00:19:37,342 --> 00:19:40,012 And it really was a discussion between Joe, myself, 343 00:19:40,095 --> 00:19:42,215 and certainly his doctors up in Boston 344 00:19:42,306 --> 00:19:44,886 about whether we should stop this medication. 345 00:19:44,975 --> 00:19:47,515 We did eventually stop the medication, 346 00:19:47,603 --> 00:19:50,483 and, really, he's been off it for four or five months now. 347 00:19:50,981 --> 00:19:53,611 [Lisa] Even though Joe has been off the ibrutinib 348 00:19:53,692 --> 00:19:57,402 and his legs remain completely without sensation, 349 00:19:57,487 --> 00:20:00,907 that doesn't mean that the crowd's theory isn't right. 350 00:20:00,991 --> 00:20:05,251 It can take up to a year for nerves to repair themselves. 351 00:20:05,537 --> 00:20:08,327 Maybe he's getting feeling back in his toes 352 00:20:08,415 --> 00:20:09,915 because he has been off the drug. 353 00:20:11,460 --> 00:20:15,380 Either way, right now, Joe is at a crossroads. 354 00:20:16,131 --> 00:20:18,761 He's recovered from his terrible blood clot 355 00:20:18,842 --> 00:20:23,762 and so could restart the ibrutinib, but if the crowd is right, 356 00:20:23,847 --> 00:20:28,437 staying off the drug might be his only chance of walking again. 357 00:20:28,727 --> 00:20:32,557 But if he does decide not to restart the ibrutinib, 358 00:20:32,648 --> 00:20:35,108 there's nothing controlling his cancer. 359 00:20:35,692 --> 00:20:38,202 It's such a tough decision to make. 360 00:20:38,403 --> 00:20:40,493 He really needs to go back to his doctors 361 00:20:40,572 --> 00:20:42,822 and get their thoughts on what he should do. 362 00:20:42,908 --> 00:20:44,908 It should be interesting. Um... 363 00:20:46,161 --> 00:20:50,501 Hopefully, if God is good and I stay off the drug, 364 00:20:50,582 --> 00:20:53,252 then I've got a... shot. 365 00:21:00,175 --> 00:21:02,175 [Eric] I was going through a drawer at work today, 366 00:21:02,761 --> 00:21:07,311 and I found when we were in the paper for the home school evening, 367 00:21:07,557 --> 00:21:10,477 like, six years ago this week or something. 368 00:21:10,560 --> 00:21:12,600 -[Ann laughing] -[Mary] I didn't know that. 369 00:21:12,688 --> 00:21:14,308 Because you were, like, three. 370 00:21:14,398 --> 00:21:16,858 [Ann] That's one of the things that I miss the most. 371 00:21:17,651 --> 00:21:21,321 I hate the fact that my mind doesn't work the way that it used to. 372 00:21:21,947 --> 00:21:23,447 My passion is writing. 373 00:21:23,532 --> 00:21:25,032 I really like being an editor. 374 00:21:25,742 --> 00:21:28,002 I've won awards for poetry, 375 00:21:28,495 --> 00:21:30,955 essay writing, short story writing. 376 00:21:31,915 --> 00:21:34,415 But now I just can't take contract work anymore. 377 00:21:34,501 --> 00:21:36,881 I just don't feel confident taking contract work. 378 00:21:38,046 --> 00:21:41,216 And so we have financial concerns. 379 00:21:41,842 --> 00:21:45,352 Even the best health insurance, it's still expensive. 380 00:21:46,013 --> 00:21:48,433 I can't afford it. I can't afford the co-pays. 381 00:21:49,891 --> 00:21:52,021 [Lisa] Right now, Ann is struggling, 382 00:21:52,102 --> 00:21:54,402 both physically and financially, 383 00:21:54,479 --> 00:21:58,649 and so I don't want to wait any longer to bring her story before the crowd. 384 00:21:59,318 --> 00:22:03,528 "'You might have had a stroke,' the doctor told the 44-year-old woman. 385 00:22:04,114 --> 00:22:06,454 'The right side of your face is paralyzed.' 386 00:22:06,533 --> 00:22:08,833 Ann nodded in agreement. 387 00:22:09,578 --> 00:22:12,248 She hardly recognized the face she saw in the mirror." 388 00:22:12,789 --> 00:22:13,999 My name is Ann. 389 00:22:14,207 --> 00:22:15,997 Um, I'm from Connecticut. 390 00:22:16,710 --> 00:22:19,420 The right side of my body is failing me. 391 00:22:19,504 --> 00:22:21,424 Can you see me? Hi! 392 00:22:21,506 --> 00:22:24,086 I'm a neurologist at Stanford University. 393 00:22:24,176 --> 00:22:26,676 I live in Australia. My specialty is hematology. 394 00:22:26,762 --> 00:22:29,512 I'm a consultant neurologist in London, UK. 395 00:22:29,598 --> 00:22:31,928 I have a PhD in neuroscience. 396 00:22:32,017 --> 00:22:37,057 A lot of the symptoms that Ann presented sounded very familiar. 397 00:22:37,147 --> 00:22:41,027 I hear that story and see that story a lot in my clinic. 398 00:22:41,109 --> 00:22:43,279 It sounded a lot like what I experienced. 399 00:22:43,362 --> 00:22:45,822 [woman] Really what came to mind was hemiplegic migraine. 400 00:22:46,073 --> 00:22:49,873 For a hemiplegic migraine, some people actually get weakness on the face, 401 00:22:49,951 --> 00:22:52,831 arm, leg, and often it happens on one side. 402 00:22:53,330 --> 00:22:55,790 The problem has to do with the functioning of the nerve, 403 00:22:55,874 --> 00:22:57,754 not the overt structure of it. 404 00:22:57,834 --> 00:23:01,094 [man] She had the face droop. It's reminiscent of what happens 405 00:23:01,171 --> 00:23:04,801 in a large percentage of cases with Lyme disease. 406 00:23:05,258 --> 00:23:08,388 To me, it's not outside of the realm of possibility. 407 00:23:08,845 --> 00:23:10,675 We live in Lyme central here. 408 00:23:11,640 --> 00:23:12,470 [Ann] Okay. 409 00:23:13,058 --> 00:23:14,348 Hi, I'm Alana. 410 00:23:14,434 --> 00:23:17,024 I live in Virginia, and I'm a student. 411 00:23:17,104 --> 00:23:18,694 One day in January, my face, 412 00:23:18,772 --> 00:23:20,982 the left side of my face just started drooping. 413 00:23:21,066 --> 00:23:23,936 The entire left side of my body was getting weaker. 414 00:23:24,027 --> 00:23:25,817 My speech was getting weirder, 415 00:23:25,904 --> 00:23:28,624 and I was having a hard time swallowing my food. 416 00:23:28,949 --> 00:23:33,369 We see this neuromuscular person, and she's like, "It's all in your head." 417 00:23:33,954 --> 00:23:37,294 It's a diagnosis of functional neurological symptom disorder. 418 00:23:41,795 --> 00:23:45,045 [Lisa] The crowd came up with quite a few possibilities for Ann, 419 00:23:45,132 --> 00:23:49,222 but, really, her doctors had already considered and dismissed 420 00:23:49,302 --> 00:23:50,352 all but two of them. 421 00:23:51,388 --> 00:23:53,008 First was Lyme disease, 422 00:23:53,098 --> 00:23:58,268 an infection caused by a kind of bacteria that's transmitted by ticks. 423 00:23:58,353 --> 00:24:02,323 Well, Ann's intermittent paralysis is not typical for Lyme infection. 424 00:24:02,899 --> 00:24:08,239 Lyme is famous for causing all kinds of very strange and interesting problems. 425 00:24:09,364 --> 00:24:15,544 And the other possibility is that Ann has a functional neurological disorder. 426 00:24:16,621 --> 00:24:20,171 That is, it's not an infection, it's not a tumor, 427 00:24:20,250 --> 00:24:23,340 it's not some pathology. 428 00:24:23,420 --> 00:24:26,300 It comes from the outside to attack you. 429 00:24:26,381 --> 00:24:31,181 It is, instead, something that your body is doing wrong. 430 00:24:31,261 --> 00:24:32,891 [Ann] It's not functional disorder. 431 00:24:32,971 --> 00:24:35,471 That's not it. It's not... That's not it. 432 00:24:35,932 --> 00:24:36,852 So... 433 00:24:36,933 --> 00:24:38,693 [Lisa] When some patients hear the diagnosis 434 00:24:38,768 --> 00:24:42,728 "a functional disorder," it has a really bad connotation. 435 00:24:42,814 --> 00:24:47,284 What they hear is that it's all in your head, that they're crazy, 436 00:24:47,360 --> 00:24:49,570 but, of course, that is not what it means. 437 00:24:50,280 --> 00:24:52,200 [Ann] I've been saying this from the beginning, 438 00:24:52,282 --> 00:24:53,622 that I really think it was Lyme. 439 00:24:53,909 --> 00:24:57,249 And it's like I feel like I need to see somebody who's a specialist 440 00:24:57,329 --> 00:25:00,749 -for them to tell me I don't have it. -Right. 441 00:25:01,625 --> 00:25:02,625 Yep. 442 00:25:09,090 --> 00:25:12,970 [Ann] I know that there is a Lyme expert nearby. 443 00:25:13,887 --> 00:25:17,927 I want to reach out to her and maybe share the article with her 444 00:25:18,016 --> 00:25:22,806 and say, "Look, the most popular idea was Lyme," you know? 445 00:25:24,189 --> 00:25:26,779 "Hey, Lyme. Could that be it?" 446 00:25:26,858 --> 00:25:29,488 -And-- -We felt like we'd never really been... 447 00:25:29,569 --> 00:25:31,279 been, like, sufficiently tested. 448 00:25:31,363 --> 00:25:36,543 I mean, we had tests, but they all were negative, 449 00:25:36,618 --> 00:25:39,958 but we'd heard lots of stories about false negatives. 450 00:25:40,038 --> 00:25:41,868 Right. Especially with the blood tests. 451 00:25:43,166 --> 00:25:44,916 [woman] So, how are you both doing today? 452 00:25:45,001 --> 00:25:46,671 -[Ann] Today's a good day. -[Eric] I'm fine. 453 00:25:46,753 --> 00:25:48,133 [woman] I do have the test. 454 00:25:49,506 --> 00:25:50,506 All right. 455 00:25:51,049 --> 00:25:54,259 I didn't know, Ann, if there's anything else you wanted to talk about, 456 00:25:54,344 --> 00:25:55,804 any questions you had. 457 00:25:55,887 --> 00:26:01,767 I did just want to really point out that, like, I have been out in deep woods 458 00:26:01,851 --> 00:26:04,601 'cause I go looking for mushroom varieties, 459 00:26:04,688 --> 00:26:06,818 so it's not outside of the realm of possibility 460 00:26:06,898 --> 00:26:09,278 that I would have been, like, bitten by a tick 461 00:26:09,359 --> 00:26:10,609 -or anything like that. -Right. 462 00:26:11,778 --> 00:26:15,908 So, prior to this appointment, I did order a test for Lyme. 463 00:26:17,409 --> 00:26:18,239 It was negative. 464 00:26:21,830 --> 00:26:24,460 We're sort of in a process of elimination at this point. 465 00:26:26,042 --> 00:26:28,342 I know how much you've gone through, 466 00:26:29,045 --> 00:26:31,755 but most of your symptoms are coming in flares 467 00:26:31,840 --> 00:26:34,380 -and not slowly progressive. -[Ann] Right. 468 00:26:34,467 --> 00:26:37,507 -So, it didn't seem to fit that diagnosis. -Right. 469 00:26:38,972 --> 00:26:39,852 [Ann] Once again, 470 00:26:40,140 --> 00:26:41,270 no answers. 471 00:26:44,269 --> 00:26:45,479 Merry Christmas. 472 00:26:46,396 --> 00:26:47,266 So... 473 00:26:52,652 --> 00:26:54,242 But it is what it is. 474 00:26:54,904 --> 00:26:56,324 -[woman] I'm sorry. -[Eric] It sucks, 475 00:26:56,406 --> 00:26:58,866 and we want to know what it is, and we want to... 476 00:27:00,410 --> 00:27:01,410 get better. 477 00:27:02,954 --> 00:27:05,124 If you don't have a diagnosis... 478 00:27:07,125 --> 00:27:10,125 I can't go into a hospital 479 00:27:10,211 --> 00:27:13,091 if something goes wrong, like it did before. 480 00:27:13,173 --> 00:27:14,923 Oh, and they don't know what it is. 481 00:27:15,008 --> 00:27:19,848 They automatically assume that you're just crazy 482 00:27:19,929 --> 00:27:21,639 and trying to seek attention. 483 00:27:22,349 --> 00:27:25,269 It makes me afraid to go to the doctor. 484 00:27:26,645 --> 00:27:28,515 I don't want to see a new doctor. 485 00:27:30,023 --> 00:27:34,613 I don't want to have to justify myself to somebody else. 486 00:27:34,986 --> 00:27:36,106 I'm tired of it. 487 00:27:37,447 --> 00:27:38,987 It's... [sniffs] 488 00:27:46,414 --> 00:27:49,794 -[Linda] What would you like to drink? -[Joe] I would like some-- 489 00:27:49,876 --> 00:27:50,956 You want tea, maybe? 490 00:27:51,044 --> 00:27:52,304 Yes, that'd be great. 491 00:27:54,798 --> 00:27:57,008 [Joe] No! No! Excuse me. 492 00:27:57,342 --> 00:27:58,842 You see this flower over here? 493 00:27:58,927 --> 00:28:03,257 This flower will cause you to die, so... 494 00:28:04,307 --> 00:28:06,477 Do you... You don't want to die, do you? 495 00:28:06,559 --> 00:28:09,019 Or get Waldenstrom's or something like that. No! 496 00:28:09,854 --> 00:28:10,694 No. 497 00:28:12,565 --> 00:28:14,395 -No. Come on. -[yowls] 498 00:28:15,527 --> 00:28:17,817 [Joe] Having this crowd response 499 00:28:17,904 --> 00:28:21,534 about the side effects of ibrutinib, I'm hopeful. 500 00:28:23,368 --> 00:28:27,078 We're going up to find out tomorrow more from our doctor. 501 00:28:27,163 --> 00:28:30,833 Like, hopefully, I can continue to stay off the drug 502 00:28:31,543 --> 00:28:34,303 and see what happens, see what comes out of it. 503 00:28:34,713 --> 00:28:37,553 Maybe get back my ability to walk. 504 00:28:37,882 --> 00:28:38,802 Uh... 505 00:28:39,759 --> 00:28:40,679 Or not. 506 00:28:42,554 --> 00:28:44,354 So, that's where I am right now. 507 00:28:47,434 --> 00:28:50,854 [Linda] Joe will tell me, "I'm really scared," 508 00:28:50,937 --> 00:28:52,397 or, "I'm nervous," or whatever. 509 00:28:52,480 --> 00:28:54,570 He tries not to show it in front of the girls. 510 00:28:54,649 --> 00:28:56,109 -[cracking] -Oh! 511 00:28:56,192 --> 00:28:58,702 -That was your shoulder! -Cracking! 512 00:28:59,237 --> 00:29:00,237 [dog barks] 513 00:29:00,780 --> 00:29:02,280 [Joe] There's no reason to be, 514 00:29:02,866 --> 00:29:04,696 you know, upset, mad. 515 00:29:05,201 --> 00:29:07,451 You've got to keep a positive attitude, 516 00:29:07,871 --> 00:29:11,961 and you've got to work hard with whatever the doctors say. 517 00:29:12,584 --> 00:29:14,714 So, I just hope I'm on the right track. 518 00:29:21,176 --> 00:29:22,426 [woman] Kitchen. You ready? 519 00:29:22,510 --> 00:29:23,470 [Joe] Good. 520 00:29:23,553 --> 00:29:25,353 [Linda] Do you want another cup of coffee, or-- 521 00:29:25,430 --> 00:29:27,350 [Joe] No, I'm all right. I'll get something later. 522 00:29:28,308 --> 00:29:31,098 [Linda] I don't know that the neuropathy is connected to the medicine 523 00:29:31,186 --> 00:29:33,096 he was taking for the Waldenstrom's. 524 00:29:34,355 --> 00:29:36,355 But he wants to walk... 525 00:29:37,108 --> 00:29:38,228 more than anything. 526 00:29:39,068 --> 00:29:42,408 He doesn't want to just say, "I'm happy. I'm content to be in a wheelchair." 527 00:29:42,489 --> 00:29:44,159 He really wants to walk again. 528 00:29:47,327 --> 00:29:48,697 [Joe] We're almost here! 529 00:29:48,787 --> 00:29:51,657 [Lisa] Right now, Joe's going to meet with his oncologist 530 00:29:51,748 --> 00:29:54,878 to get the results of his most recent blood tests. 531 00:29:54,959 --> 00:30:00,009 If his cancer remains under control while he's off the ibrutinib, 532 00:30:00,089 --> 00:30:02,339 then he might be in the clear to just stay off it 533 00:30:02,425 --> 00:30:03,885 and see what happens. 534 00:30:07,722 --> 00:30:09,562 -[woman] In here. -[Joe] That's okay. 535 00:30:13,478 --> 00:30:14,478 [knock on door] 536 00:30:14,562 --> 00:30:15,612 -Come in. -Come in. 537 00:30:16,523 --> 00:30:17,773 -[doctor] Hey, Joe. -How you doing? 538 00:30:17,857 --> 00:30:19,357 [doctor] How you doing? Good to see you. 539 00:30:19,442 --> 00:30:21,692 -Good to see you, too. -Good to see you as well. 540 00:30:23,863 --> 00:30:25,323 Have you been sleeping well? 541 00:30:25,406 --> 00:30:26,276 [Joe] Yes. 542 00:30:26,574 --> 00:30:27,624 -Too well. -Too well? 543 00:30:30,995 --> 00:30:32,785 [Joe] So, has there been any other people 544 00:30:32,872 --> 00:30:36,042 that have been on Waldenstrom's medications like ibrutinib? 545 00:30:36,376 --> 00:30:38,626 Have you seen side effects? 546 00:30:40,213 --> 00:30:41,053 Um... 547 00:30:41,130 --> 00:30:45,220 You know, I have not seen any ibrutinib-related neuropathies. 548 00:30:45,468 --> 00:30:49,508 Um, we now have patients on it for seven, eight, nine years, 549 00:30:49,764 --> 00:30:53,564 um, and that's not a typical side effect that we're seeing with ibrutinib. 550 00:30:56,229 --> 00:31:00,019 And, actually, in people that start ibrutinib from the beginning, 551 00:31:00,108 --> 00:31:03,648 it seems like patients are more likely to discontinue a drug 552 00:31:03,736 --> 00:31:07,116 not because it's not working anymore. It's really usually toxicities. 553 00:31:07,699 --> 00:31:11,119 And so about maybe 30% of people, 20 to 30% will discontinue. 554 00:31:11,202 --> 00:31:12,202 [Joe] But if... 555 00:31:12,787 --> 00:31:16,117 If the ibrutinib is causing some of the toxicity... 556 00:31:17,584 --> 00:31:18,964 you know, who knows? 557 00:31:19,919 --> 00:31:22,169 Maybe I don't need the ibrutinib anymore. 558 00:31:25,425 --> 00:31:27,425 [Dr. Huntington] We did blood work about a week ago. 559 00:31:27,510 --> 00:31:30,600 Your levels, from my end, look okay. 560 00:31:30,680 --> 00:31:33,980 As long as you're making progress, um... 561 00:31:34,392 --> 00:31:38,312 and the levels or new symptoms aren't arising, I think we should hold off 562 00:31:38,396 --> 00:31:40,106 -on treating your Waldenstrom's. -[Joe] Okay. 563 00:31:40,523 --> 00:31:41,983 -That makes sense. -Yeah. 564 00:31:42,066 --> 00:31:44,856 [Dr. Huntington] I think we need to continue with close surveillance. 565 00:31:46,487 --> 00:31:48,867 Right now, we're just watching his Waldenstrom's. 566 00:31:49,073 --> 00:31:50,913 It does not seem to be that he is symptomatic. 567 00:31:50,992 --> 00:31:53,242 His IgM level is not particularly high, 568 00:31:53,328 --> 00:31:57,418 so I really am focusing on managing him 569 00:31:57,498 --> 00:32:00,038 without actually treating his Waldenstrom's, 570 00:32:00,126 --> 00:32:05,836 and we'll certainly treat him if signs of clinical progression occur. 571 00:32:06,132 --> 00:32:09,302 There's also some other oral medications that we could consider as well 572 00:32:09,385 --> 00:32:10,715 that work on different mechanisms, 573 00:32:10,803 --> 00:32:15,393 so I think it's likely that we won't use ibrutinib anymore on you, 574 00:32:15,850 --> 00:32:18,900 but it's more just if we can minimize... 575 00:32:18,978 --> 00:32:20,978 If the risk is really small, 576 00:32:21,481 --> 00:32:22,981 it still might be there. 577 00:32:23,066 --> 00:32:24,186 Why not use something else 578 00:32:24,275 --> 00:32:26,275 -that we think will work just as well? -[Joe] Right. 579 00:32:26,361 --> 00:32:27,201 [Linda] Right. 580 00:32:27,278 --> 00:32:29,068 All right, Doc. Thanks very much. 581 00:32:29,155 --> 00:32:31,155 Thank you so much. Thank you. 582 00:32:31,991 --> 00:32:33,621 -Good seeing you both. -Thank you. You too. 583 00:32:39,374 --> 00:32:41,004 [Joe] I'm very happy about that. 584 00:32:42,794 --> 00:32:44,134 Let's give it a shot. 585 00:32:44,921 --> 00:32:46,841 I'm hopeful, anyway. 586 00:32:48,216 --> 00:32:49,296 And that's the key. 587 00:32:49,968 --> 00:32:51,468 You know, some people say 588 00:32:51,552 --> 00:32:55,062 that it didn't take overnight to cure you, 589 00:32:55,390 --> 00:32:57,810 -so... -[woman] Yeah. No, definitely. Yeah. 590 00:32:57,892 --> 00:33:00,732 [man] I sensed from the videos it was very... 591 00:33:01,813 --> 00:33:02,983 uplifting. 592 00:33:03,064 --> 00:33:05,654 -[woman] Yeah. -I don't know if you feel the same way. 593 00:33:06,359 --> 00:33:08,189 [Joe] No, definitely. All the people that did-- 594 00:33:08,277 --> 00:33:10,907 [Linda] They took the time out of their, you know, 595 00:33:11,447 --> 00:33:12,907 lives to write in. 596 00:33:13,241 --> 00:33:15,621 [woman] I want to get back and thank every single one of them. 597 00:33:15,702 --> 00:33:17,042 That's the beauty of it. 598 00:33:30,216 --> 00:33:31,926 -[Lisa] Hey. How are you? -[Eric] Hello. 599 00:33:32,010 --> 00:33:33,010 Nice to see you. 600 00:33:34,554 --> 00:33:36,264 [Lisa] What, sit over there? Okay. 601 00:33:37,890 --> 00:33:38,770 Okay. 602 00:33:41,185 --> 00:33:44,265 Now that we're certain that Ann doesn't have Lyme disease, 603 00:33:44,355 --> 00:33:48,315 I want to meet with her and her husband to talk about the other possibility: 604 00:33:48,818 --> 00:33:51,238 a functional neurological disorder. 605 00:33:51,529 --> 00:33:55,989 I know there's a lot of misinformation in the world about functional disorders, 606 00:33:56,242 --> 00:33:57,912 but I want to reassure her 607 00:33:58,161 --> 00:34:01,621 this is a diagnosis which, if acted upon, 608 00:34:01,706 --> 00:34:04,376 can be treated and possibly cured. 609 00:34:05,877 --> 00:34:08,297 [Ann] I have issue with functional disorder, 610 00:34:08,379 --> 00:34:11,009 and the reason why is because... 611 00:34:12,675 --> 00:34:13,835 functional disorder... 612 00:34:13,926 --> 00:34:16,756 The term "functional disorder" is still... 613 00:34:17,638 --> 00:34:20,978 associated with this psychological condition, 614 00:34:21,059 --> 00:34:24,979 and they are both interchanged. [laughs] And it's just like-- 615 00:34:25,063 --> 00:34:28,273 [Lisa] Well, let's separate that 'cause it's not actually the same thing. 616 00:34:28,357 --> 00:34:32,487 It's just, like, there's gonna be an awful lot of medical people 617 00:34:32,570 --> 00:34:34,320 who come in and they look at that, 618 00:34:34,405 --> 00:34:36,815 and they just think, "Nutty." 619 00:34:37,408 --> 00:34:38,328 "Crazy." 620 00:34:39,410 --> 00:34:40,580 "Hysterical." 621 00:34:40,661 --> 00:34:43,291 -You should not go to those doctors. -[laughing] 622 00:34:44,165 --> 00:34:46,205 [Lisa] Can I just say, as far as I can tell, 623 00:34:46,292 --> 00:34:47,212 -what it means? -[Eric] Sure. 624 00:34:47,293 --> 00:34:48,133 [Lisa] It means that 625 00:34:48,211 --> 00:34:50,711 we can't, with whatever we know 626 00:34:50,797 --> 00:34:53,587 and with all of our tools and blood tests and MRIs 627 00:34:53,674 --> 00:34:55,224 and all these fancy scans... 628 00:34:55,510 --> 00:34:59,310 As far as we can tell, everything works perfectly, 629 00:35:00,056 --> 00:35:03,846 -and yet it doesn't function perfectly. -[Ann] Right. 630 00:35:03,935 --> 00:35:07,515 That's what I think it means. To me, it's a great big ol' question mark. 631 00:35:07,814 --> 00:35:10,694 -It's just a catch-all. -Well, that's not actually true. 632 00:35:10,775 --> 00:35:15,025 There are things that have been shown to be effective 633 00:35:15,988 --> 00:35:18,158 in functional illnesses... 634 00:35:19,033 --> 00:35:21,043 for reasons that are not at all clear: 635 00:35:22,078 --> 00:35:23,828 medicines and therapies. 636 00:35:23,913 --> 00:35:28,293 So, it's not just a word. 637 00:35:28,376 --> 00:35:30,546 -Okay. -There are actually therapies for it, 638 00:35:30,628 --> 00:35:31,458 but, you know, 639 00:35:31,546 --> 00:35:34,586 I'm just a person with an opinion. I'm not your doctor, right? So, I just... 640 00:35:34,674 --> 00:35:36,974 You know, like everybody, I have my opinions. 641 00:35:37,426 --> 00:35:40,256 So, I'm not ready to rule this out yet. 642 00:35:40,346 --> 00:35:41,346 [Ann] Okay. 643 00:35:42,473 --> 00:35:43,983 I haven't ruled that out. 644 00:35:44,058 --> 00:35:47,228 It's just trying to find somebody who knows what the heck it is. 645 00:35:47,311 --> 00:35:48,861 Do you know anybody? [laughs] 646 00:35:48,938 --> 00:35:52,018 Do you know anybody who's a specialist in that? I don't know. 647 00:35:52,608 --> 00:35:54,778 Well, it seems like you should be able to... 648 00:35:54,861 --> 00:35:56,151 I mean, I don't know. 649 00:35:56,237 --> 00:35:58,157 [Ann] If there is a doctor who really feels 650 00:35:58,239 --> 00:36:01,949 that they could figure out, "Oh, this might tell us..." 651 00:36:02,034 --> 00:36:06,624 This might either tell us more about, like, what is there. 652 00:36:06,706 --> 00:36:09,036 Like, this might say to us, 653 00:36:09,125 --> 00:36:13,335 "Oh, well, there's blank, blank, blank. This could indicate... 654 00:36:13,421 --> 00:36:16,471 Now we know what specifically we've got to look at." 655 00:36:16,883 --> 00:36:17,843 Absolutely. 656 00:36:21,721 --> 00:36:23,601 [Lisa] There's one doctor from the crowd 657 00:36:23,681 --> 00:36:27,101 who knows a lot about functional neurological disorders, 658 00:36:27,185 --> 00:36:31,265 and I think that Ann and her husband would really benefit from talking to him. 659 00:36:31,355 --> 00:36:34,605 [video call ringtone] 660 00:36:34,692 --> 00:36:36,692 Hi, Dr. Schneider. Um... 661 00:36:37,069 --> 00:36:38,529 -I'm Ann. -Hi. 662 00:36:38,779 --> 00:36:40,359 I appreciate you taking the time. 663 00:36:40,448 --> 00:36:42,618 -I'm not your patient. -My pleasure. 664 00:36:42,992 --> 00:36:43,992 I've had... 665 00:36:45,286 --> 00:36:47,496 kind of a long list of physicians 666 00:36:48,247 --> 00:36:51,457 who have told me it's functional disorder, 667 00:36:51,542 --> 00:36:54,382 and, you know, they're seeing it as a mental illness. 668 00:36:54,462 --> 00:36:57,972 I haven't made any diagnosis for you yet. I haven't seen you yet, 669 00:36:58,633 --> 00:37:01,393 but that being said, the ideas 670 00:37:01,469 --> 00:37:05,309 of what a functional movement disorder or a functional neurological disorder are 671 00:37:05,389 --> 00:37:07,099 have been changing over time. 672 00:37:07,183 --> 00:37:09,193 -Right. -They actually removed the requirement 673 00:37:09,268 --> 00:37:11,938 that someone had to have a psychiatric illness 674 00:37:12,021 --> 00:37:14,021 as part of this disorder, 675 00:37:14,106 --> 00:37:19,646 and, actually, the only requirements are basically that you have, um... 676 00:37:20,321 --> 00:37:22,411 symptoms that would be, on physical exam, 677 00:37:22,490 --> 00:37:26,450 consistent with functional neurological disorder. 678 00:37:26,535 --> 00:37:29,405 I think one of the things that's really just happening in our culture 679 00:37:29,497 --> 00:37:31,827 is this slow understanding that we've been working with 680 00:37:31,916 --> 00:37:34,786 this dichotomous view of psyche and brain, 681 00:37:35,628 --> 00:37:37,918 and it's just been with us for so long, 682 00:37:38,005 --> 00:37:40,165 and slowly being able to untangle that 683 00:37:40,258 --> 00:37:43,928 and say, "Well, maybe we're not really talking about two different things." 684 00:37:44,011 --> 00:37:46,181 That's reassuring to hear. 685 00:37:46,681 --> 00:37:47,811 You know, 686 00:37:47,890 --> 00:37:50,560 it's one of these things where I'm just like, "Oh, great." 687 00:37:50,643 --> 00:37:53,193 Every time I go in with a sickness, everybody's gonna be like, 688 00:37:53,271 --> 00:37:58,151 "Oh, no! We just don't believe you." And it's like, "Oh, great! Perfect." 689 00:37:58,234 --> 00:37:59,074 I hear you. 690 00:37:59,151 --> 00:38:01,451 This is really what an African American woman 691 00:38:01,529 --> 00:38:04,319 who's got all the biases against me really needs. 692 00:38:04,407 --> 00:38:06,907 You're right. You know, I hear you, and I hear the frustration 693 00:38:06,993 --> 00:38:08,913 because I have a lot of patients who've come to me 694 00:38:08,995 --> 00:38:11,865 because I think younger doctors are more open 695 00:38:11,956 --> 00:38:13,916 to understanding functional disorder. 696 00:38:14,292 --> 00:38:15,672 It's... Things are changing, 697 00:38:15,751 --> 00:38:20,671 and it does require a little bit of sometimes talking to people 698 00:38:20,756 --> 00:38:23,626 and helping them to understand me as a physician. 699 00:38:23,718 --> 00:38:25,588 And, actually, if I examine you 700 00:38:25,678 --> 00:38:27,558 and I think it's not a functional disorder, 701 00:38:27,805 --> 00:38:29,885 I don't have a vested interest in what the diagnosis is. 702 00:38:29,974 --> 00:38:31,604 I have a vested interest in getting people better, 703 00:38:31,851 --> 00:38:32,941 and so... 704 00:38:33,019 --> 00:38:35,189 You know, so that's really what I enjoy. 705 00:38:35,771 --> 00:38:38,941 Okay. All right. Well, look, thank you for that. 706 00:38:39,525 --> 00:38:42,815 What should be our next step? You know, if you want to come and see me, 707 00:38:42,903 --> 00:38:44,453 I'm more than happy to see you. 708 00:38:44,530 --> 00:38:46,950 You know, we could do at least a single consultation 709 00:38:47,033 --> 00:38:49,953 where we go through things, we kind of get a sense of what's going on, 710 00:38:50,036 --> 00:38:51,746 and, you know, we can talk about 711 00:38:51,829 --> 00:38:53,999 what would be an appropriate treatment plan. 712 00:38:54,623 --> 00:38:56,543 Okay, I will see, um... 713 00:38:57,126 --> 00:38:59,496 I'll see about that. Um... 714 00:38:59,670 --> 00:39:01,300 I appreciate you taking the time. 715 00:39:01,380 --> 00:39:03,630 -All right. Goodbye. Bye. -All right. Bye. 716 00:39:13,392 --> 00:39:14,392 [Joe] Whoa! 717 00:39:14,477 --> 00:39:15,597 They're moving. 718 00:39:16,228 --> 00:39:17,308 [woman] Look at that. 719 00:39:17,855 --> 00:39:19,435 [Joe] Wow. That's amazing. 720 00:39:19,523 --> 00:39:20,483 Keep moving. 721 00:39:22,693 --> 00:39:23,993 [Joe] I couldn't believe it, 722 00:39:24,070 --> 00:39:29,200 but, all of a sudden, I started to get some feeling in my foot 723 00:39:29,283 --> 00:39:30,793 to above the ankle. 724 00:39:32,119 --> 00:39:33,249 We're still gonna walk. 725 00:39:34,413 --> 00:39:37,503 I don't know how long it's gonna take, but we're gonna do this. 726 00:39:38,376 --> 00:39:42,546 Maybe this neuropathy really did come from ibrutinib. 727 00:39:42,630 --> 00:39:43,840 I just see that... 728 00:39:45,007 --> 00:39:47,587 there's hope at the end of the... 729 00:39:48,386 --> 00:39:49,216 of the road. 730 00:39:49,678 --> 00:39:50,888 Never give up. 731 00:39:52,014 --> 00:39:56,354 [Joe] It'd give me a chance to golf again with my brothers and all that good stuff. 732 00:39:56,644 --> 00:39:57,944 And you still beat us that day. 733 00:39:58,020 --> 00:39:59,690 I still beat you guys. 734 00:40:00,689 --> 00:40:03,069 My daughter's stealing those cannolis. 735 00:40:03,150 --> 00:40:04,780 [woman] Those chocolate chips are good. 736 00:40:05,319 --> 00:40:06,199 Mmm! 737 00:40:06,612 --> 00:40:08,532 Are you getting tired? Do you want to go upstairs? 738 00:40:08,614 --> 00:40:09,494 [Joe] Yes. 739 00:40:09,573 --> 00:40:11,333 [Linda] Some people are paralyzed, 740 00:40:11,409 --> 00:40:14,039 and you know that they're never gonna be able to get it back. 741 00:40:15,204 --> 00:40:16,414 -Love you. -Love you too. 742 00:40:16,497 --> 00:40:17,417 Thanks, buddy. All right. 743 00:40:17,498 --> 00:40:19,878 [Linda] With Joe, there is some movement there, 744 00:40:19,959 --> 00:40:22,999 so I think he will walk again. 745 00:40:25,506 --> 00:40:27,676 Hopefully! [laughs] 746 00:40:29,718 --> 00:40:32,218 [Joe] I've gotten responses back in my feet 747 00:40:32,847 --> 00:40:34,387 and my toes, 748 00:40:34,473 --> 00:40:36,393 in the beginning of my legs, 749 00:40:36,475 --> 00:40:38,845 and they could feel my glutes firing. 750 00:40:39,395 --> 00:40:42,145 So, those are all positives that... 751 00:40:43,107 --> 00:40:44,727 maybe we can cure this thing. 752 00:40:47,278 --> 00:40:50,318 [Lisa] Hearing that Joe is able to move his foot, 753 00:40:50,406 --> 00:40:52,656 that's a really exciting development. 754 00:40:52,741 --> 00:40:56,371 It's hard to say whether this proves the crowd's theory or not, 755 00:40:56,704 --> 00:41:00,254 but no matter what, Joe definitely got something from the crowd. 756 00:41:00,541 --> 00:41:04,801 He got from them hope and a sense of a new direction to pursue, 757 00:41:04,879 --> 00:41:07,589 and that can make a huge difference for any patient. 758 00:41:11,886 --> 00:41:13,756 -[Ann] Hi. -[woman] Pleased to meet you. 759 00:41:13,846 --> 00:41:14,716 [Ann] It's Alana, right? 760 00:41:14,805 --> 00:41:15,715 -Yeah. -Hi. Ann. 761 00:41:15,806 --> 00:41:17,306 Hi. Her dad, Scott. 762 00:41:17,391 --> 00:41:18,891 Hi. Nice to meet you. 763 00:41:20,269 --> 00:41:23,269 [Lisa] Because Ann really isn't going for the diagnosis 764 00:41:23,355 --> 00:41:25,435 of a functional neurological disorder, 765 00:41:25,524 --> 00:41:28,444 I thought maybe she'd want to talk with somebody from the crowd, 766 00:41:28,861 --> 00:41:33,661 a woman who actually had this disease and was able to take it on 767 00:41:33,741 --> 00:41:34,781 and overcome it. 768 00:41:35,743 --> 00:41:37,043 It's awesome to meet you. 769 00:41:37,119 --> 00:41:38,699 -[Ann] Oh, cool! -Yeah, I'm just... 770 00:41:39,038 --> 00:41:40,408 [Alana] I had convinced myself... 771 00:41:40,915 --> 00:41:44,625 I can't be the only person that is just suffering 772 00:41:44,710 --> 00:41:46,840 -from half my body not working. -[Ann] Right. 773 00:41:46,921 --> 00:41:49,841 Or there has to be somebody who's had something similar. 774 00:41:49,924 --> 00:41:52,764 And so reading your story was actually really, really awesome 775 00:41:52,843 --> 00:41:54,093 because I was like, "Whoa! 776 00:41:54,178 --> 00:41:57,768 There is somebody that's been through the same thing." 777 00:41:57,848 --> 00:42:00,428 [Ann] Yes, it is very reassuring. 778 00:42:01,060 --> 00:42:05,150 So, do you mind me asking, like, a little bit about your experience? 779 00:42:05,523 --> 00:42:08,983 One day, my face just started to droop, 780 00:42:09,068 --> 00:42:13,238 and I just lost the ability to really move the left side of my face, 781 00:42:13,322 --> 00:42:15,032 and the MRI showed nothing. 782 00:42:15,115 --> 00:42:18,945 And so we started going to more and more doctors just to try to be like, 783 00:42:19,036 --> 00:42:22,576 "What is this?" And so we go to the neuromuscular clinic, 784 00:42:22,665 --> 00:42:24,705 and the doctor there says, "It's all in your head." 785 00:42:24,959 --> 00:42:27,749 Well, this must be just coming up with it, 786 00:42:27,836 --> 00:42:29,956 or it's just a result... Psychosomatic, basically. 787 00:42:30,047 --> 00:42:31,627 -Yes. -[Ann] Absolutely. I relate. 788 00:42:31,715 --> 00:42:32,835 [Alana] Yeah, and I was like... 789 00:42:33,425 --> 00:42:36,005 I went home from that appointment, and I just cried 790 00:42:36,095 --> 00:42:40,215 because I was just like, "There is no way that this is all in my head." 791 00:42:40,307 --> 00:42:43,597 And on my second appointment with the rehabilitation doctor, 792 00:42:43,686 --> 00:42:45,016 he said, "Okay... 793 00:42:45,771 --> 00:42:50,401 So I think it's this thing: functional neurological symptom disorder, 794 00:42:50,484 --> 00:42:54,364 which is extremely broad, but it may help you get treatment." 795 00:42:54,446 --> 00:42:55,736 [Ann] Did you experience that? 796 00:42:55,823 --> 00:43:00,083 Like, afterwards, they would see the functional disorder diagnosis, 797 00:43:00,160 --> 00:43:02,160 and they would be like, "Oh, you're just nuts"? 798 00:43:02,246 --> 00:43:04,536 Well, I actually had pretty good doctors after that, 799 00:43:04,623 --> 00:43:06,083 which I was really lucky 800 00:43:06,166 --> 00:43:09,496 because my physical therapist understood what it was. 801 00:43:09,795 --> 00:43:10,745 Right. 802 00:43:12,631 --> 00:43:17,931 And I found that occupational therapy, just for about a month and a half, 803 00:43:18,012 --> 00:43:20,102 -really, really helped me. -Okay. 804 00:43:20,180 --> 00:43:23,480 I could... I was able to write again. 805 00:43:23,559 --> 00:43:25,809 I had to relearn how to walk by myself. 806 00:43:25,894 --> 00:43:29,694 I had to relearn how to just use my muscles, 807 00:43:30,190 --> 00:43:33,650 and it was so nice relearning how to use my muscles. 808 00:43:33,902 --> 00:43:36,662 I hadn't been able to do that for a few months. 809 00:43:36,739 --> 00:43:40,699 Just a combination of physical therapy and occupational therapy 810 00:43:40,784 --> 00:43:43,164 was just absolutely wonderful. 811 00:43:44,580 --> 00:43:45,660 Amazing. 812 00:43:47,082 --> 00:43:48,962 I'm so happy for you. 813 00:43:49,585 --> 00:43:52,545 Don't believe people that say you're crazy because you're not. 814 00:43:52,630 --> 00:43:53,760 [Ann laughing] 815 00:43:53,839 --> 00:43:55,089 -Oh, thank you! -Yeah. 816 00:43:55,174 --> 00:43:58,264 I appreciate the empathy, and I appreciate, you know... 817 00:43:58,344 --> 00:44:01,974 And I appreciate the uplifting advice. Thank you very much for that. 818 00:44:03,474 --> 00:44:04,894 [Ann] For the first time, 819 00:44:04,975 --> 00:44:08,645 I feel that there is somebody out there that understands. 820 00:44:09,146 --> 00:44:11,316 If there's actually a treatment for it, 821 00:44:11,940 --> 00:44:14,940 I don't know if I could expect that, you know, 822 00:44:15,027 --> 00:44:18,487 and I'm not really expecting that, but that means that I've got options. 823 00:44:18,572 --> 00:44:22,742 I can say, "Wow, let's try this treatment. Let's do something." 824 00:44:23,410 --> 00:44:25,660 [Lisa] Ann is considering seeing a doctor 825 00:44:25,746 --> 00:44:29,166 who specializes in functional neurological disorders. 826 00:44:29,249 --> 00:44:32,539 I figured I could just test it and see if that, you know... 827 00:44:33,379 --> 00:44:34,339 That's a good one. 828 00:44:34,963 --> 00:44:36,923 [Ann] I don't know. I'm not entirely sure. 829 00:44:37,007 --> 00:44:41,297 [Lisa] Maybe not this week, maybe not next week, or even next month. 830 00:44:41,387 --> 00:44:43,507 The crowd has given her this very good option, 831 00:44:43,639 --> 00:44:48,269 but taking the next step is a decision she has to make for herself. 832 00:45:22,845 --> 00:45:26,305 Looking back at this experiment, you know, it's really been... 833 00:45:26,807 --> 00:45:28,057 an amazing ride. 834 00:45:30,728 --> 00:45:31,768 I have to say, 835 00:45:31,854 --> 00:45:34,864 the crowd performed extremely well. 836 00:45:37,067 --> 00:45:40,897 You know, the responses we've gotten have been from people all over the world. 837 00:45:41,864 --> 00:45:45,534 In some cases, they've given us the exact diagnosis. 838 00:45:45,617 --> 00:45:48,327 We are happy now to give you this news. 839 00:45:48,412 --> 00:45:49,912 I don't even know what to say. 840 00:45:49,997 --> 00:45:51,917 Thank you for everything. 841 00:45:52,750 --> 00:45:53,750 [Lisa] Other times, 842 00:45:53,834 --> 00:45:56,304 they've given us a different way of looking at something 843 00:45:56,378 --> 00:45:57,668 that no one else had thought of. 844 00:45:57,921 --> 00:46:00,421 I really appreciate it. Like, this has helped. 845 00:46:01,133 --> 00:46:02,223 [Lisa] We've had people say, 846 00:46:02,301 --> 00:46:04,851 "Oh, my God! The same thing happened to me!" 847 00:46:04,928 --> 00:46:07,308 He has the same thing I do. 848 00:46:08,974 --> 00:46:10,774 [Lisa] They've suggested different treatments. 849 00:46:11,018 --> 00:46:11,848 Ooh-la-la! 850 00:46:11,935 --> 00:46:14,265 I said exactly the same thing. 851 00:46:14,688 --> 00:46:18,068 [Lisa] They also offered a warmth and a compassion 852 00:46:18,567 --> 00:46:23,357 that I think really benefited our patients in ways that I never anticipated. 853 00:46:23,447 --> 00:46:24,697 Don't ever lose hope! 854 00:46:27,701 --> 00:46:29,291 We're off to the pizza parlor. 855 00:46:29,828 --> 00:46:31,118 Who's coming with me? 856 00:46:31,497 --> 00:46:34,207 [Lisa] At the beginning of this, I thought that crowdsourcing 857 00:46:34,291 --> 00:46:37,211 might be a way to make the room just that much bigger. 858 00:46:38,253 --> 00:46:40,673 It turned out to be hugely bigger, 859 00:46:40,756 --> 00:46:43,836 so much bigger than I had ever expected. 860 00:46:45,594 --> 00:46:49,144 Sometimes medicine has to be a team effort, 861 00:46:50,224 --> 00:46:54,274 and the very next diagnosis could literally come from anyone. 862 00:46:57,147 --> 00:46:58,567 So, you never know. 863 00:46:58,649 --> 00:47:01,609 Someday, I may even need to ask you, 864 00:47:02,277 --> 00:47:04,277 "What do you think is going on?"