WEBVTT - Case #09: Michele 0:00:04.519 --> 0:00:06.520 Towards the end of the day, I thought, well, I 0:00:06.559 --> 0:00:08.719 think I know what doesn't feel right. My scalp is 0:00:08.760 --> 0:00:13.480 tingly and my face feels numb. That's so unusual. 0:00:14.120 --> 0:00:16.960 I definitely was very cautious, you know, and cautious making 0:00:16.960 --> 0:00:20.119 sure my sister didn't drink after her or get the 0:00:20.200 --> 0:00:20.840 germs either. 0:00:21.480 --> 0:00:25.360 She had had several years of symptoms that were slowly progressing. 0:00:26.160 --> 0:00:29.920 And when we hear that, you know, that's worrisome. 0:00:30.520 --> 0:00:35.720 It's such a baffling set of symptoms. We felt like 0:00:35.880 --> 0:00:38.520 perhaps he thought that I was just making this up, 0:00:38.800 --> 0:00:41.040 but the episodes just kept coming. 0:00:48.320 --> 0:00:51.920 How terrifying would it be to fight an unknown enemy, 0:00:52.440 --> 0:00:56.280 one you didn't recognize and didn't see coming. What if 0:00:56.320 --> 0:01:00.400 that enemy was coming from within a disease that even 0:01:00.520 --> 0:01:06.160 doctors couldn't identify. Nearly half of all Americans suffer from 0:01:06.240 --> 0:01:10.920 some chronic illness, and many struggle for an accurate diagnosis. 0:01:12.000 --> 0:01:18.600 These are their stories and Lauren Bret Pacheco and this 0:01:19.080 --> 0:01:38.520 is symptomatic. When you talk with Michelle L. Frank, the 0:01:38.560 --> 0:01:43.280 first thing you notice is her warm personality and natural curiosity. 0:01:43.319 --> 0:01:46.120 You can actually hear the smile she carries around with 0:01:46.160 --> 0:01:49.320 her basically all the time. As the mother of three daughters, 0:01:49.600 --> 0:01:54.160 Michelle attributes her positivity to just one thing, coffee. 0:01:54.960 --> 0:01:57.000 I'm all about the coffee. Me too. 0:01:57.240 --> 0:01:59.280 I like to say the color is dark, but the 0:01:59.320 --> 0:01:59.960 power is clear. 0:02:00.320 --> 0:02:03.480 Yes, my husband sometimes says, can we go just thirty 0:02:03.520 --> 0:02:09.400 minutes without talking about coffee? But I have a lot 0:02:09.440 --> 0:02:13.320 of hobbies and different interests, and I love jigsaw puzzles. 0:02:13.720 --> 0:02:15.400 I'm a volunteer for Find a Grave. 0:02:15.520 --> 0:02:18.840 I love cemeteries and so I help families find their 0:02:18.880 --> 0:02:20.560 loved ones cemetery stones. 0:02:21.520 --> 0:02:22.760 So that's something fun I do. 0:02:23.520 --> 0:02:27.240 Michelle is very much a family oriented person, her pride 0:02:27.280 --> 0:02:29.640 and joy being her two daughters who are up at school, 0:02:29.840 --> 0:02:32.520 her stepdaughter, and three step grandsons. 0:02:32.960 --> 0:02:36.240 I think she's somebody who has a lot of interest 0:02:36.320 --> 0:02:40.480 and a lot of hobbies. She loves learning and sharing 0:02:40.520 --> 0:02:43.080 what she's learned with other people. I think she's someone 0:02:43.080 --> 0:02:45.119 who just loves knowledge. 0:02:45.720 --> 0:02:49.160 That's her eldest daughter, Meghan. Meghan is currently attending law 0:02:49.200 --> 0:02:52.040 school in New York City, but even at a distance, 0:02:52.400 --> 0:02:55.760 Meghan and Michelle maintain a strong bond as mother and daughter. 0:02:56.320 --> 0:02:59.239 Meghan and I are very close. We can pretty much 0:02:59.360 --> 0:03:02.120 just say anything or share anything. 0:03:03.080 --> 0:03:03.359 You know. 0:03:03.800 --> 0:03:05.480 We've been through a lot of changes in our life, 0:03:05.480 --> 0:03:06.760 and she's watched me struggle. 0:03:07.240 --> 0:03:11.079 We definitely bonded a lot watching medical TV shows. I 0:03:11.120 --> 0:03:13.000 don't know if she mentioned to you that she loved 0:03:13.000 --> 0:03:16.040 the show Mystery Diagnosis and we would always watch that together. 0:03:16.360 --> 0:03:20.200 That's so wild, particularly since your mom was living basically 0:03:20.200 --> 0:03:21.520 with a medical mystery. 0:03:21.160 --> 0:03:26.240 Of her own. Yeah, exactly, a. 0:03:26.240 --> 0:03:29.760 Medical mystery that would plague Michelle for over twenty years. 0:03:30.560 --> 0:03:34.840 Michelle's symptoms started just after her eldest daughter's first birthday. 0:03:35.320 --> 0:03:37.800 It was the late nineties and his new parents. Michelle 0:03:37.800 --> 0:03:40.800 and her then husband were soaking in all the memories 0:03:40.800 --> 0:03:43.880 seeing their child hit another major milestone. 0:03:44.480 --> 0:03:47.360 We had a big party for her, and life was 0:03:47.440 --> 0:03:50.240 really good. We had settled into a routine. I was 0:03:50.240 --> 0:03:53.720 a working mom, but we spent every minute we could 0:03:53.800 --> 0:03:56.920 with her when we weren't working, and life was really, 0:03:56.960 --> 0:04:01.200 really good. And then, just a couple of weeks after 0:04:01.240 --> 0:04:04.240 her first birthday, I was at work one day and 0:04:04.320 --> 0:04:07.040 something felt off, but I couldn't quite tell what it was. 0:04:07.360 --> 0:04:13.400 Something just didn't feel right. Towards the end of the day, 0:04:13.440 --> 0:04:15.800 I thought, well, I think I know what doesn't feel right. 0:04:15.920 --> 0:04:20.240 My scalp is tingly, and my face feels numb, and 0:04:20.320 --> 0:04:20.960 I thought. 0:04:20.680 --> 0:04:21.839 That's so unusual. 0:04:21.920 --> 0:04:23.880 And I was working at a hospital at the time, 0:04:23.960 --> 0:04:26.920 in outpatient rehab, and so I worked with physical therapists 0:04:26.920 --> 0:04:32.000 and occupational therapists, and they all panicked and thought, you 0:04:32.000 --> 0:04:33.400 know what if I was having a stroke. 0:04:36.480 --> 0:04:40.000 An overall feeling of achiness, numbness, and tangling in her 0:04:40.040 --> 0:04:43.440 scalp and face. The initial signs were pointing to a 0:04:43.560 --> 0:04:48.520 potentially severe issue bubbling under the surface, but she waited 0:04:48.600 --> 0:04:51.120 until the next day to go to her general practitioner, 0:04:51.480 --> 0:04:53.279 trying not to overplay the situation. 0:04:57.960 --> 0:05:01.120 So I made an appointment the next morning to see 0:05:01.120 --> 0:05:04.400 my doctor, and he was just perplexed. He didn't really 0:05:04.440 --> 0:05:07.919 know what it was. He ruled out Bell's palsy because 0:05:09.200 --> 0:05:12.840 I didn't have the drooping. My face didn't droop. It 0:05:12.920 --> 0:05:16.560 was more of a sensory issue, not a motor issue. 0:05:17.440 --> 0:05:22.480 My scalp tingled, my eyelid felt heavy, my face was numb, 0:05:22.520 --> 0:05:26.080 and it interestingly, it stopped right at midline. It did 0:05:26.120 --> 0:05:29.320 not cross the mid line. 0:05:29.000 --> 0:05:34.080 So a numbness that mimicked partial paralysis, presenting only on 0:05:34.080 --> 0:05:37.600 one side of her face. In addition to other symptoms. 0:05:38.160 --> 0:05:43.359 My gums were swollen, and curiously, that side of my 0:05:43.480 --> 0:05:47.640 throat was sore, which still to this day. I just 0:05:48.720 --> 0:05:51.760 it's such a baffling set of symptoms. 0:05:53.440 --> 0:05:57.520 When you say numbness and soreness in the throat and 0:05:57.600 --> 0:06:00.320 numbness on the face. Did it feel like you had 0:06:00.360 --> 0:06:01.240 had novacaine? 0:06:01.880 --> 0:06:03.920 It very much felt like I had been to the 0:06:04.000 --> 0:06:07.720 dentist and it was wearing off, very much so. And 0:06:08.800 --> 0:06:12.560 as the episode would fade over the next couple of days, 0:06:12.800 --> 0:06:14.760 the swelling would go down in my gums and they 0:06:14.760 --> 0:06:19.120 would feel kind of raw almost again, almost like I 0:06:19.160 --> 0:06:21.680 had been to the dentist and received a shot or something. 0:06:21.720 --> 0:06:23.200 My gums were very sensitive. 0:06:24.279 --> 0:06:27.120 How long did the first episode last. 0:06:28.520 --> 0:06:33.679 It lasted about two or three days, and my doctor 0:06:33.720 --> 0:06:37.719 could not figure out what it was. He said, it 0:06:37.760 --> 0:06:40.680 could just be a fluke. If it happens again, call 0:06:40.800 --> 0:06:44.560 us immediately, and he sent me on my way. 0:06:47.800 --> 0:06:50.400 Michelle returned to normal life for a few weeks. The 0:06:50.480 --> 0:06:53.120 doctors had ruled out a stroke in Bell's palsy, but 0:06:53.279 --> 0:06:56.760 still didn't have any real answers. This was just the 0:06:56.800 --> 0:07:00.320 beginning of the havoc. Her unknown condition would reach on 0:07:00.400 --> 0:07:05.240 her life, paging doctor Lund to the nurses station. 0:07:08.640 --> 0:07:12.840 So well, probably about a month later, my mom was 0:07:12.880 --> 0:07:16.280 having surgery. We're all very close to my mom, and 0:07:17.000 --> 0:07:19.880 it was a very stressful time. We were all sitting 0:07:19.880 --> 0:07:22.600 in the hospital waiting for the surgery start and waiting 0:07:22.640 --> 0:07:28.160 for an update, and I was just so worried. And 0:07:28.240 --> 0:07:31.320 as we're sitting there waiting, I realized, oh no, my 0:07:31.400 --> 0:07:35.360 face is numb again, same side, same side, and my 0:07:35.440 --> 0:07:36.520 heart just sunk. 0:07:36.760 --> 0:07:38.760 I just thought, no, not now. 0:07:38.920 --> 0:07:42.239 The focus is supposed to be on my mom today. 0:07:42.400 --> 0:07:46.440 This day is not about me. And I was just devastated. 0:07:47.800 --> 0:07:51.240 So I did what they told me to do. I 0:07:51.280 --> 0:07:54.680 called my doctor's office and said, I'm at the hospital 0:07:54.760 --> 0:07:57.560 with my mom and my face is numb again, and 0:07:57.600 --> 0:07:59.560 they said you need to go down to the er 0:08:00.720 --> 0:08:03.960 and seek treatment immediately. You could be having a stroke. 0:08:04.360 --> 0:08:08.720 We don't know what's going through your head at that moment. 0:08:08.840 --> 0:08:11.640 That must have been such a conflict between wanting to 0:08:11.720 --> 0:08:13.560 be there for your mother and having to deal with 0:08:13.600 --> 0:08:14.600 that kind of crisis. 0:08:15.920 --> 0:08:18.840 It felt horrible because I didn't want the attention to 0:08:18.880 --> 0:08:21.360 be on me. This day was not about me, and 0:08:21.760 --> 0:08:24.520 I felt embarrassed that I was going to have to 0:08:24.560 --> 0:08:27.200 tell my sisters, Oh, hey, I think something's wrong with me. 0:08:27.760 --> 0:08:29.200 I'm going to have to go down to the er. 0:08:29.800 --> 0:08:33.760 And of course they didn't. They didn't react, and the 0:08:33.760 --> 0:08:36.079 way I was worried they would. Of course they were supportive, 0:08:36.160 --> 0:08:39.080 and they said get down there now, and they waited 0:08:39.160 --> 0:08:41.439 on my mom and I went downstairs to the er. 0:08:41.600 --> 0:08:45.080 They ran a cat scan, ran some blood work. They said, 0:08:45.160 --> 0:08:47.720 we can't find anything wrong. You seem fine. 0:08:48.280 --> 0:08:49.040 How did that feel? 0:08:50.559 --> 0:08:56.679 I felt really dumb, like I had caused all this drama. 0:08:57.120 --> 0:08:58.840 You know, we were trying not to let my mom know. 0:08:59.559 --> 0:09:01.840 She was out of surgery by this time. And I'm like, 0:09:01.920 --> 0:09:05.040 don't tell mom. You're never too old to say, don't 0:09:05.040 --> 0:09:07.199 tell mom. 0:09:07.760 --> 0:09:11.160 Even though her sisters reacted with support, Michelle was starting 0:09:11.200 --> 0:09:14.959 to internalize the shame and guilt from navigating her uncontrollable, 0:09:15.120 --> 0:09:20.800 unexplainable symptoms, which remained invisible to those around her. As 0:09:20.840 --> 0:09:23.480 the months go on, the symptoms started to get worse. 0:09:24.120 --> 0:09:26.480 In addition to the numbness in her face and overall 0:09:26.520 --> 0:09:29.360 body aches, her vision was starting to be affected every 0:09:29.360 --> 0:09:32.320 time she had a flare up. Michelle then gets referred 0:09:32.320 --> 0:09:35.880 to a neurologist to try and reassess her symptoms. 0:09:36.440 --> 0:09:39.240 So I did go to a neurologist. He sent me 0:09:39.240 --> 0:09:42.080 for an MRI. We went for the follow up. He 0:09:42.120 --> 0:09:45.839 said the MRI was fine. He couldn't find anything wrong 0:09:45.880 --> 0:09:49.240 with me, because he had thought maybe I had multiple 0:09:49.240 --> 0:09:51.679 sclerosis and that was the thing they were trying to 0:09:51.800 --> 0:09:54.680 rule out. He said, we don't know what this is, 0:09:54.760 --> 0:09:58.280 and he asked so many questions, and I felt like 0:09:58.320 --> 0:10:01.840 he was trying to trip me up. Her husband was 0:10:02.679 --> 0:10:06.040 confused too, and he just kept asking questions over and 0:10:06.080 --> 0:10:08.880 over again, and about what side it was, and well, 0:10:08.880 --> 0:10:10.680 if it was this side, or how did I know 0:10:11.800 --> 0:10:13.440 that I was having a flare up if I wasn't 0:10:13.440 --> 0:10:16.600 touching my face, And it was a very frustrating visit. 0:10:17.160 --> 0:10:20.000 What was the implication that it was all in your 0:10:20.000 --> 0:10:21.280 head or you were making it up? 0:10:21.400 --> 0:10:24.280 Yes, we felt like perhaps he thought that I was 0:10:24.360 --> 0:10:27.680 just either making this up or I wasn't accurately portraying 0:10:27.720 --> 0:10:28.760 what my symptoms were. 0:10:29.800 --> 0:10:33.120 Michelle was starting to feel both frustrated and scared. No 0:10:33.160 --> 0:10:35.559 one seemed to have the answers. Some people didn't even 0:10:35.600 --> 0:10:38.720 seem to believe what she was saying was true. She 0:10:38.800 --> 0:10:41.920 started second guessing herself. Was she making too big a 0:10:41.920 --> 0:10:45.720 deal out of this? Were the symptoms real? They were 0:10:45.880 --> 0:10:49.360 very real, so real that her daughter, Megan, has distinct 0:10:49.400 --> 0:10:52.400 memories of her flare ups all throughout her childhood. 0:10:52.960 --> 0:10:56.080 She would be like, Oh, my face is going down again. 0:10:56.840 --> 0:10:59.200 And it was almost like I would get this sense 0:10:59.200 --> 0:11:02.040 of dread because it's like, oh, she's going to be 0:11:02.040 --> 0:11:06.080 sick for a few days. Like and also just like 0:11:07.600 --> 0:11:10.840 frustration that we just didn't know what it was, you 0:11:10.840 --> 0:11:12.280 know what I mean, And we didn't know the best 0:11:12.280 --> 0:11:13.640 way to treat it or anything. 0:11:14.760 --> 0:11:18.200 So both girls, for the majority of their lives watched 0:11:18.240 --> 0:11:21.480 you struggle with an undiagnosed illness. 0:11:21.720 --> 0:11:24.960 Yes they did. They didn't really understand it. I kept 0:11:24.960 --> 0:11:29.280 it quiet most of the time, but they knew when 0:11:29.280 --> 0:11:31.920 I was having a flare up. Sometimes I would, you know, 0:11:32.000 --> 0:11:36.280 make a passing comment of oh, my face is hurting today, 0:11:36.400 --> 0:11:37.719 or I'm having a flare up. 0:11:38.040 --> 0:11:39.160 Just be patient with me. 0:11:40.520 --> 0:11:43.400 She would almost start acting like someone who's coming down 0:11:43.400 --> 0:11:45.520 with the flu. You know, she would be laying down, 0:11:45.640 --> 0:11:48.200 she'd be drinking a lot of electro lights. She would 0:11:48.240 --> 0:11:53.480 be in the dark, trying to minimize her like sensitivity 0:11:53.520 --> 0:11:57.280 to light. You would notice that she was lethargic and 0:11:57.320 --> 0:11:58.719 be like, oh, well, she's gonna be sick for a 0:11:58.760 --> 0:12:01.480 few days, so you know, batten down the hatches a 0:12:01.559 --> 0:12:05.280 little bit because mom's gonna need a little extra help. 0:12:06.480 --> 0:12:09.080 When Michelle was hit with another flare up a few 0:12:09.080 --> 0:12:12.040 months after visiting the neurologist, she was seen by a 0:12:12.160 --> 0:12:16.560 nurse practitioner who had a confident new idea of what 0:12:16.600 --> 0:12:17.120 it could be. 0:12:19.360 --> 0:12:23.040 It was a very stressful time and my family's life. 0:12:23.040 --> 0:12:26.480 My husband was starting a new business, and looking back, 0:12:26.520 --> 0:12:29.360 I can remember how stressful that was. So I had 0:12:29.360 --> 0:12:32.679 another flare up, went to the doctor and there was 0:12:32.679 --> 0:12:34.000 a nurse practitioner there. 0:12:34.679 --> 0:12:36.240 This was the first time I had met her. 0:12:36.360 --> 0:12:39.760 She didn't really know me, and her take on the 0:12:39.840 --> 0:12:45.160 situation was, I think it could be related to herpes. Wow, 0:12:45.920 --> 0:12:50.360 that's unexpected. I don't have herpes, she said, Well, more 0:12:50.440 --> 0:12:54.320 of the oral herpies tie, the kind of herpies that 0:12:54.360 --> 0:12:59.600 causes fever blisters. She said, perhaps you're having outbreaks or 0:12:59.600 --> 0:13:04.120 flare up like you would fever blisters. And so she 0:13:04.320 --> 0:13:10.959 prescribed me a steroid and herpie's medication, and I felt 0:13:11.040 --> 0:13:16.440 so embarrassed. I felt like that was such a strange 0:13:16.559 --> 0:13:19.800 take on it. But when a doctor or a nurse 0:13:19.800 --> 0:13:21.560 tells you something, you know, you keep that in the 0:13:21.559 --> 0:13:24.520 back of your mind as a possibility. And I can 0:13:24.640 --> 0:13:27.280 remember going to the pharmacy and there was a young 0:13:27.320 --> 0:13:32.360 girl there, the pharmacy tech, and she looked at the 0:13:32.400 --> 0:13:34.920 medication on the label, and then she looked at me 0:13:35.040 --> 0:13:38.400 and kind of stickered, and I just thought, I'm not 0:13:38.440 --> 0:13:40.839 taking this medicine. But I still kept it in the 0:13:40.880 --> 0:13:44.320 back of my mind that what if it is What 0:13:44.360 --> 0:13:47.079 if it is related? Because it is flaring up and 0:13:47.160 --> 0:13:51.080 during stressful times, So what if that's it. 0:13:52.679 --> 0:13:56.120 Michelle again felt the pain of growing guilt and shame 0:13:56.200 --> 0:13:59.440 tied to her flare ups. She now faced an additional 0:13:59.480 --> 0:14:04.679 stigma of a Herpe's diagnosis. Feeling misguided, Michelle started shutting down, 0:14:05.080 --> 0:14:06.840 even ignoring her prescribed treatment. 0:14:08.760 --> 0:14:11.000 I pretty much kept it all inside because it was 0:14:11.080 --> 0:14:14.480 embarrassing and I've never met anyone that had this, so 0:14:15.440 --> 0:14:17.320 I didn't really want to talk about it because it 0:14:17.480 --> 0:14:21.920 just felt like something weird. I didn't really have anyone 0:14:21.960 --> 0:14:22.600 to share it with. 0:14:23.720 --> 0:14:26.680 Though she didn't take the herpes medicine, the idea that 0:14:26.720 --> 0:14:30.120 a virus could be the underlying cause always lingered in 0:14:30.120 --> 0:14:33.000 the back of her mind. She started to worry about 0:14:33.000 --> 0:14:34.000 infecting her kids. 0:14:35.520 --> 0:14:38.240 She would basically act like she was contagious because we 0:14:38.360 --> 0:14:40.080 thought it was a virus, so it would be like 0:14:40.480 --> 0:14:42.840 treat her as you would treat someone with the flu, 0:14:42.880 --> 0:14:45.680 where you didn't want to touch or drink after them 0:14:45.800 --> 0:14:46.680 or anything like that. 0:14:47.320 --> 0:14:50.480 I remember the first time my daughter called me out 0:14:50.480 --> 0:14:53.480 on it and said, why, why will you not let 0:14:53.480 --> 0:14:58.840 me drink after you today? And I said, well, I'm 0:14:58.920 --> 0:15:02.720 concerned that this problem I have with my face could 0:15:02.760 --> 0:15:05.360 be contagious. What if it's contagious, what if it's viral 0:15:05.400 --> 0:15:07.480 in nature? And I don't want you to get it? 0:15:07.720 --> 0:15:10.720 And she was stunned. She had no idea that all 0:15:10.800 --> 0:15:12.760 of these years I had worried that I could give 0:15:12.800 --> 0:15:13.280 it to her. 0:15:13.880 --> 0:15:15.480 I was always really nervous that I was going to 0:15:15.520 --> 0:15:19.560 get it too, So I definitely was very cautious, you know, 0:15:19.680 --> 0:15:22.680 and cautious making sure my sister didn't drink after her 0:15:22.800 --> 0:15:24.440 or get the germs either. 0:15:25.680 --> 0:15:29.240 By this time, Michelle had been battling her undiagnosed symptoms 0:15:29.280 --> 0:15:31.440 for nearly a decade and. 0:15:31.400 --> 0:15:34.560 At that point, I was done. I was completely done. 0:15:34.880 --> 0:15:38.640 I'm not seeking treatment for this. And this sounds really crass, 0:15:38.680 --> 0:15:41.600 but I thought, it hasn't killed me. It hasn't killed 0:15:41.600 --> 0:15:44.960 me yet. Maybe it's nothing. Maybe it's just something that 0:15:45.200 --> 0:15:49.120 I'm going to have to live with, never imagining that 0:15:49.240 --> 0:15:51.480 I really would be living with it for so many years. 0:15:57.280 --> 0:16:03.040 Okay, So as the episodes continue and progress, how do 0:16:03.160 --> 0:16:07.080 they change and how does the time period between each 0:16:07.080 --> 0:16:08.440 episode alter. 0:16:09.840 --> 0:16:13.040 The time period between episodes would vary. Sometimes I could 0:16:13.160 --> 0:16:15.760 go three months without an episode, and I would consider 0:16:15.800 --> 0:16:19.200 that pretty lucky, and sometimes I would get them once 0:16:19.240 --> 0:16:25.280 a month, just randomly. And the episodes could be mild 0:16:25.280 --> 0:16:28.320 to moderate, or they could be pretty severe in nature. 0:16:28.400 --> 0:16:33.400 There were times when it was a struggle just to 0:16:33.400 --> 0:16:37.160 get out of bed because I felt so sick, because 0:16:37.160 --> 0:16:39.360 they would give me the feeling of having the flu. 0:16:40.480 --> 0:16:43.280 Sometimes I would get a headache, but it wasn't a 0:16:43.320 --> 0:16:44.360 debilitating headache. 0:16:44.440 --> 0:16:46.160 Sometimes it would just take a little bit. 0:16:47.840 --> 0:16:51.800 And it sounds crazy, it sounds completely crazy, but that's 0:16:52.200 --> 0:16:53.160 that's what I lived with. 0:16:53.280 --> 0:16:55.800 That's how it happened for so many years. 0:16:56.600 --> 0:16:59.800 Michelle just learned to live with it, juggling her symptoms 0:16:59.840 --> 0:17:02.880 alongside with work and caring for her young family, but 0:17:03.040 --> 0:17:05.439 soon back to back flare ups would land her in 0:17:05.520 --> 0:17:08.400 the hospital where a new doctor was going to take 0:17:08.440 --> 0:17:10.359 a closer look at what was going on. 0:17:11.520 --> 0:17:13.760 I had an episode with my right side of my face, 0:17:14.400 --> 0:17:17.679 and then just as soon as that started to clear up, 0:17:17.720 --> 0:17:21.080 my left side whetnam and I just thought, I'm done 0:17:21.080 --> 0:17:23.639 with this. I have got to find out what is 0:17:23.640 --> 0:17:24.240 wrong with me. 0:17:29.080 --> 0:17:33.040 We'll be right back with Symptomatic, a Medical Mystery Podcast. 0:17:37.640 --> 0:17:45.679 Now back to Symptomatic a Medical Mystery Podcast. Michelle L. 0:17:45.720 --> 0:17:50.040 Frank was living with a mysterious unknown condition that continually 0:17:50.040 --> 0:17:53.399 flared up at the worst moments in the most stressful times, 0:17:53.840 --> 0:17:55.679 making it hard for her to even get out of 0:17:55.680 --> 0:18:01.040 bed on some days, numbness, overall, body aches impacted. Every 0:18:01.080 --> 0:18:03.359 time a doctor thought they had an idea of what 0:18:03.440 --> 0:18:07.080 this could be, they were stumped. It wasn't a stroke, 0:18:07.240 --> 0:18:11.320 bell's palsy, or MS. Michelle had given up hope of 0:18:11.359 --> 0:18:14.800 finding any answer and instead just learned to live with 0:18:14.880 --> 0:18:18.040 this life changing condition. And yet in the middle of 0:18:18.080 --> 0:18:21.919 her uncontrolled flare ups, she was given a different and 0:18:22.080 --> 0:18:26.199 even more dire diagnosis. Just a few years after her 0:18:26.240 --> 0:18:37.720 second daughter was born, my. 0:18:37.720 --> 0:18:40.679 Daughter Emily, she had some special needs and that was 0:18:40.720 --> 0:18:45.719 a very stressful three years. We were stressed to the max, 0:18:45.840 --> 0:18:49.359 and just as she started to get through some of 0:18:49.400 --> 0:18:52.800 her issues, I was hit with another blow. I found 0:18:52.840 --> 0:18:56.040 out I had stage three colon cancer in two thousand 0:18:56.080 --> 0:19:01.119 and seven, and that was such a shock, and for 0:19:01.160 --> 0:19:04.720 the next year that's what we focused on, so that 0:19:04.800 --> 0:19:06.280 my kids could have a mom. 0:19:06.920 --> 0:19:09.680 I can't imagine the amount of stress you were under 0:19:09.880 --> 0:19:15.560 dealing with cancer, with raising a family, with having a career, 0:19:16.160 --> 0:19:23.160 and this unknown disease plaguing you on top of it. 0:19:23.880 --> 0:19:27.359 Did the stress of that time period bring on more 0:19:27.359 --> 0:19:29.880 episodes while you were treating the cancer. 0:19:30.760 --> 0:19:34.080 Yes, And I had figured out that if I didn't 0:19:34.119 --> 0:19:38.520 manage my stress, that the episodes would be more frequent 0:19:38.600 --> 0:19:41.240 and they would be more severe. If I would have 0:19:41.240 --> 0:19:44.760 an acute episode of something very stressful, then I could 0:19:44.760 --> 0:19:46.840 pretty much expect to wake up the next day with 0:19:46.880 --> 0:19:47.960 my face numb. 0:19:48.760 --> 0:19:51.880 Michelle was now battling not just for peace and comfort, 0:19:52.000 --> 0:19:55.159 but for her life. Her colon cancer was trying to 0:19:55.200 --> 0:19:57.639 spread to the rest of her body through her lump nodes. 0:19:58.160 --> 0:20:01.760 She would undergo multiple rounds of chemotherapy in hopes of 0:20:01.800 --> 0:20:02.359 defeating it. 0:20:03.160 --> 0:20:07.359 She actually decided to stop the chemotherapy just because it 0:20:07.440 --> 0:20:10.639 was just, you know, too much. So after her last round, 0:20:10.680 --> 0:20:12.080 she was like, we're not going to do any more 0:20:12.160 --> 0:20:15.679 chemo and we're just going to see what happens. So 0:20:15.800 --> 0:20:18.320 we waited a really long time, and then when she 0:20:18.440 --> 0:20:21.760 had her next scan, I believe in her next colonoscopy, 0:20:21.840 --> 0:20:24.400 that was when we found out, like, oh, she's cancer free. 0:20:24.760 --> 0:20:28.440 And we always try to celebrate that day every year 0:20:28.520 --> 0:20:30.680 because it's really really exciting. 0:20:31.440 --> 0:20:35.360 Finally a win, getting through chemo and beating back cancer, 0:20:35.480 --> 0:20:38.520 so she could be there for her family. Ever selfless 0:20:38.520 --> 0:20:41.080 and genuine, Michelle never wanted to feel like a burden 0:20:41.119 --> 0:20:43.720 to any of them. Even as her flare ups continued 0:20:43.720 --> 0:20:45.320 to intensify and shift. 0:20:47.000 --> 0:20:49.720 I did notice as the years went by that they 0:20:49.720 --> 0:20:53.679 were happening more frequently. I think my stress was just 0:20:53.800 --> 0:20:56.480 so enormous that I was having a hard time staying 0:20:56.520 --> 0:20:59.840 on top of it. I had some mental health issues. 0:21:00.400 --> 0:21:07.320 My depression was pretty significant. In twenty twelve, my husband 0:21:07.359 --> 0:21:11.720 and I got divorced. That was a very stressful year, 0:21:12.720 --> 0:21:16.120 and the episodes just kept coming to the point where 0:21:16.160 --> 0:21:18.720 they were happening every four to six weeks for a while. 0:21:19.760 --> 0:21:21.800 You must have felt so overwhelmed. 0:21:23.000 --> 0:21:26.600 I did. I did. It was a very difficult time. 0:21:28.480 --> 0:21:32.720 How did it impact your your role as a mother, 0:21:33.000 --> 0:21:35.280 and how did it impact the girls. 0:21:36.560 --> 0:21:39.880 I think they just didn't really understand. 0:21:41.040 --> 0:21:43.240 Exactly what I was going through because I'm pretty good 0:21:43.240 --> 0:21:46.720 at hiding things from them. I didn't want them to know. 0:21:46.800 --> 0:21:50.119 I wanted to focus on them, and they were growing 0:21:50.200 --> 0:21:53.440 up and moving on with their lives. And ever since 0:21:53.480 --> 0:21:57.399 I had cancer, the fears and worries that they had 0:21:57.480 --> 0:22:01.520 about me were so great that I did everything I 0:22:01.600 --> 0:22:03.560 could to keep them for worrying about me. 0:22:06.240 --> 0:22:08.760 I would say it started getting worse when I was 0:22:08.800 --> 0:22:11.640 a teenager, and that's like a time when you're really 0:22:11.640 --> 0:22:14.919 busy anyways, and any kind of disruption is just like, 0:22:15.000 --> 0:22:17.680 oh no, Like we got to work around this. And 0:22:18.160 --> 0:22:22.400 I was just really worried for her because I could 0:22:22.400 --> 0:22:25.840 see it was frustrating her and affecting her emotionally, like 0:22:25.880 --> 0:22:27.960 it was just draining because she was always on edge 0:22:28.000 --> 0:22:30.960 waiting for the next episode. 0:22:31.160 --> 0:22:34.119 A few years later, Michelle would go on to remarry, 0:22:34.800 --> 0:22:37.040 just as she did with her kids, she hid her 0:22:37.040 --> 0:22:40.119 pain from her partner at the beginning, but that didn't 0:22:40.200 --> 0:22:41.040 last very long. 0:22:41.640 --> 0:22:44.320 Todd and I got married in twenty fifteen, and he 0:22:44.520 --> 0:22:47.720 is just the most amazing man you could ever imagine. 0:22:48.560 --> 0:22:50.840 After we got married, and you know, we were living 0:22:50.880 --> 0:22:53.639 together and he was seeing me experience these episodes, he 0:22:53.720 --> 0:22:59.000 was horrified. He just could not believe that I was 0:22:59.000 --> 0:23:01.960 suffering in this sway and wasn't going to the doctor 0:23:02.000 --> 0:23:05.200 about it. And I would always fire back and say, 0:23:05.800 --> 0:23:07.600 how do you go to the doctor for something that 0:23:07.640 --> 0:23:10.960 you've had for twenty three years that seems weird? 0:23:11.600 --> 0:23:13.800 What do you say when they say when did this start? 0:23:13.840 --> 0:23:15.640 And you say, oh, nineteen ninety nine. 0:23:16.400 --> 0:23:18.720 Even with Todd now by her side pushing her to 0:23:18.720 --> 0:23:21.920 find answers, the growing intensity of her flare ups would 0:23:21.960 --> 0:23:26.200 soon become something she couldn't just live with or ignore. 0:23:27.320 --> 0:23:31.800 All right, so tell me about the turning point, when 0:23:31.800 --> 0:23:34.359 do you finally decide you've had enough and you're going 0:23:34.440 --> 0:23:36.200