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Speaker 1: Hey, it's Lauren Bright Pacheco. In addition to true crime, health and wellness have long been intense interests of mine, and I've been working on a podcast that actually combines all three. Symptomatic, a medical mystery podcast tackles incredible cases of health challenges that have stumped patients and their doctors for years, sometimes even decades. At times terrifying and ultimately really inspiring. Symptomatic offers amazing insight into real life health issues that could actually impact your life too. We're currently launching our second season and I am so excited to share our first episode with you. I hope you find it as engaging and compelling as I do, and I will be back very very soon with another true crime investigation. Towards the end of the day, I thought, well, I think I know what doesn't feel at my as tingly and my face feels numb. That's so unusual. I definitely was very cautious, you know, and cautious making sure my sister didn't drink after her or get the germs either. She had had several years of symptoms that were slowly progressing, and when we hear that, you know, that's worrisome. It's such a baffling set of symptoms. We felt like perhaps he thought that I was just making this up, but that episodes just kept coming. How terrifying would it be to fight an unknown enemy, one you didn't recognize and didn't see coming. What if that enemy was coming from within a disease that even doctors couldn't identify. Nearly half of all Americans suffer from some chronic illness, and many struggle for an accurate diagnosis. These are their stories. I'm Lauren Bright, the checko, and this is symptomatic. When you talk with Michelle L. Frank, the first thing you notice is her warm personality and natural curiosity. You can actually hear the smile she carries around with her basically all the time. As the mother of three daughters. Michelle attributes her positivity to just one thing, coffee. I'm all about the coffee. Me too. I'd like to say the color is dark, but the power is clear. Yes, my husband sometimes says, can we go just thirty minutes without talking about coffee? But I have a lot of hobbies and different interests, and I love jigsaw puzzles. I'm a volunteer for Finder Grave. I love cemeteries, and so I help families find their loved ones cemetery stones. So that's something fun I do. Michelle is very much a family oriented person, her pride and joy being her two daughters who are up at school, her stepdaughter, and three step grandsons. I think she's somebody who has a lot of interests and a lot of hobbies. She loves learning and sharing what she's learned with other people. I think she's someone who just loves knowledge. That's her eldest daughter, Megan. Megan is currently attending law school in New York City, but even at a distance, Megan and Michelle maintain a strong bond as mother and daughter. Megan and I are very close. We can pretty much just say anything or share anything. You know. We've been through a lot of changes in our life, and she's watched me struggle. We definitely bond it a lot watching medical TV shows. I don't know if she mentioned to you that she loved the show Mystery Diagnosis and we would always watch that together. That's so wild, particularly since your mom was living basically with a medical mystery of her own. Yeah, exactly, a medical mystery that would plague Michelle for over twenty years. Michelle's symptoms started just after her eldest daughter's first birthday. It was the late nineties, and as new parents, Michelle and her then husband were soaking in all the memories seeing their child hit another major mildstone. We had a big party for her, and life was really good. We had settled into a routine. I was a working mom, but we spent every minute we could with her when we weren't working, and life was really really good. And then, just probably a couple of weeks after her first birthday, I was at work one day and something felt off, but I couldn't quite tell what it was. Something just didn't feel right. Towards the end of the day, I thought, well, I think I know what doesn't feel right. My scalp is tingly and my face feels numb. And I thought that's so unusual. And I was working at a hospital at the time in our patient rehab, and so I worked with physical therapists and occupational therapist and they all panicked and thought, you know what if I was having a stroke. An overall feeling of achiness, numbness, and tingling in her scalp and face. The initial signs were pointing to a potentially severe issue bubbling under the surface, but she waited until the next day to go to her general practitioner, trying not to overplay the situation. So I made an appointment for the next morning to see my doctor, and he was just perplexed. He didn't really know what it was. He ruled out Bell's palsy because I didn't have the drooping. My face didn't droop. It was more of a sensory issue, not a motor issue. My scalp tingled, my eyelid felt heavy, My face was numb, and it interestingly, it stopped right at midline. It did not cross the midline, so a numbness that mimicked partial paralysis, presenting only on one side of her face. In addition to other symptoms, my gums were swollen, and curiously, that side of my throat was sore, which still did this day. I just it's such a baffling set of symptoms. When you say numbness and soreness in the throat and numbness on the face, Did it feel like you had had novocaine? It very much felt like I had been to the dentists and it was wearing off very much so, and as the episode would fade over the next couple of days, the swelling would go down in my gums and they would feel kind of raw, almost again, almost like I had been to the dentist and received a shot or something. My gums were very sensitive. How long did the first episode last. It lasted about two or three days, and my doctor could not figure out what it was. He said, it could just be a fluke. If it happens again, call us immediately, and he sent me on my way. Michelle returned to normal life for a few weeks. The doctors had ruled out a stroke in Bell's palsy, but still didn't have any real answers. This was just the beginning of the havoc. Her unknown condition would reek on her life, paging doctor Lund to the nurse's station. So probably about a month later, my mom was having surgery. We're all very close to my mom, and it was a very stressful time. We were all sitting in the hospital waiting for the surgery start and waiting for an update, and I was just so worried. And as we're sitting there waiting, I realized, oh, no, my face is numb again, same side, same side, and my heart just sunk. I just thought, no, not now. The focus is supposed to be on my mom today. This day is not about me, and I was just devastated. So I did what they told me to do. I called my doctor's office and said, I'm at the hospital with my mom and my face is numb again. And they said, you need to go down to the er and seek treatment immediately. You could be having a stroke. We don't know what's going through your head at that moment. That must have been such a conflict between wanting to be there for your mother and having to deal with that kind of crisis. It felt horrible because I didn't want the attention to be on me. This day was not about me, and I felt embarrassed that I was gonna have to tell my sisters, Oh, hey, I think something's wrong with me. I'm gonna have to go down to the ar. And of course they didn't. They didn't react, and the way I was worried they would. Of course, they were supportive, and they said get down there now, and they waited on my mom and I went downstairs to the er. They ran a cat scan, ransom blood work. They said, we can't find anything wrong. You seem fine? How did that feel? I felt really dumb, like I had caused all this drama. You know, we were trying not to let my mom know she was out of surgery by this time, and I'm like, don't tell mom. You're never too old to say, don't tell mom. Even though her si SSS reacted with support, Michelle was starting to internalize the shame and guilt from navigating her uncontrollable, unexplainable symptoms, which remained invisible to those around her. As the months go on, the symptoms started to get worse. In addition to the numbness in her face and overall body aches, her vision was starting to be affected every time she had a flare up. Michelle then gets referred to a neurologist to try and reassess her symptoms. So I did go to a neurologist. He sent me for an MRI. We went for the follow up. He said the MRI was fine. He couldn't find anything wrong with me because he had thought maybe I had multiple sclerosis and that was the thing they were trying to rule out. He said, we don't know what this is. And he asked so many questions and I felt like he was trying to trip me up. My husband was confused too, and he just kept asking questions over and over again and about what side it was, and well, if it was this side, or how did I know that I was having a flare up if I wasn't touching my face? And it was a very frustrating visit. What was the implication that it was all in your head or you were making it up? Yes, we felt like perhaps he thought that I was just either making this up or I wasn't accurately portraying what my symptoms were. Michelle was starting to feel both frustrated and scared. No one seemed to have the answers. Some people didn't even seem to believe what she was saying was true. She started second guessing herself. Was she making too big a deal out of this? Were the symptoms real? They were very real, so real that her daughter Megan, has distinct memories of her flare ups all throughout her childhood. She would be like, Oh, my face is going numb again, And it was almost like I would get this sense of dread sort of because it's like, oh, she's going to be sick for a few days. And also just like frustration that we just didn't know what it was, you know what I mean, and we didn't know the best way to treat it or anything. So both girls, for the majority of their lives watched you struggle with an undiagnosed illness. Yes they did. They didn't really understand it. I kept it quiet most of the time, but they knew when I was having a flare up. Sometimes I would, you know, make a passing comment of oh, my face is hurting today, or I'm having a flare up. Just be patient with me. She would almost start acting like someone who was coming down with the flu. You know, she would be laying down, she would be drinking a lot of electro lights. She would be in the dark, trying to minimize her like sensitivity to light. You would notice that she was lethargic and be like, oh, well, she's gonna be sick for a few days, so, you know, batting down the hatches a little bit, because Mom's gonna need a little extra help. When Michelle was hit with another a few months after visiting the neurologist, she was seen by a nurse practitioner who had a confident new idea of what it could be. It was a very stressful time in my family's life. My husband was starting a new business, and looking back, I can remember how stressful that was. So I had another flare up, went to the doctor and there was a nurse practitioner there. This was the first time I had met her. She didn't really know me, and her take on the situation was, I think it could be related to herpies. Wow, that's unexpected. I don't have herpies, she said, well, more of the oral herpies type, the kind of herpies that causes fever blisters. She said, perhaps you're having outbreaks or flare ups like you would fever blisters. And so she prescribed me a steroid and herpies metic and I felt so embarrassed. I felt like that was such a strange take on it. But when a doctor or a nurse tells you something, you know you keep that in the back of your mind as a possibility. And I can remember going to the pharmacy and there was a young girl there, the pharmacy tech, and she looked at the medication on the label, and then she looked at me and kind of stickered. I just thought, I'm not taking this medicine, but I still kept it in the back of my mind that what if it is if it is related, because it is flaring up and enduring stressful times, so what if that's it. Michelle again felt the pain of growing guilt and shame tied to her flare ups. She now faced an additional stigma of a harpies diagnosis. Feeling misguided, Michelle started shutting down, even ignoring her prescribed treatment. I pretty much kept it all inside because it was embarrassing and I've never met anyone that had this, so I didn't really want to talk about it because it just felt like something weird. I didn't really have anyone to share it with. Though she didn't take the harpies medicine, the idea that a virus could be the underlying cause always lingered in the back of her mind. She started to worry about infecting her kids. She would basically act like she was contagious because we thought it was a virus, so it would be like treat her as you would treat someone with the flu, or you didn't want to touch or drink after them, or anything like that. I remember the first time my daughter called me out on and said, why, why will you not let me drink after you today? And I said, well, I'm concerned that this problem I have with my face could be contagious. What if it's contagious, what if it's viral in nature? And I don't want you to get it? And she was stunned, and she had no idea that all of these years I had worried that I could give it to her. I was always really nervous that I was going to get it too, So I definitely was very cautious, you know, and cautious making sure my sister didn't drink after her get the germs either. By this time, Michelle had been battling her undiagnosed symptoms for nearly a decade, and at that point I was done. I was completely done. I'm not seeking treatment for this. And this sounds really crass, but I thought, it hasn't killed me, It hasn't killed me yet. Maybe it's nothing. Maybe it's just something that I'm gonna have to live with, never imagining that I really would be living with it for so many years. Okay, So as the episodes continue and progress, how did they change and how does the time period between each episode all the time carry between episodes would vary. Sometimes I could go three months without an episode, and I would consider that pretty lucky. And sometimes I would get them once a month, just randomly, and the episodes could be mild to moderate, or they could be pretty severe in nature. There were times when it was a struggle just to get out of bed because I felt so sick, because they would give me the feeling of having the flu. Sometimes I would get a headache, but it wasn't a debilitating headache. Sometimes it would just stake a little bit. And it sounds crazy, it sounds completely crazy, but that's what I lived with. That's how it happened for so many years. Michelle just learned to live with it, juggling her symptoms alongside with work and caring for her young family. But soon back to back flare ups would lander in the hospital where a new doctor was going to take a closer look at what was going on. I had an episode with my right side of my face, and then just as soon as that started to clear up, my left side went nam and I just thought, I'm done with this. I have got to find out what is wrong with me. We'll be right back with Symptomatic a Medical Mystery Podcast. Now back to Symptomatic a Medical Mystery Podcast. Michelle L. Frank was living with a mysterious unknown condition that continually flared up at the worst moments in the most stressful times, making it hard for her to even get out of bed on some days. Numbness, overall, body aches, impacted vision. Every time a doctor thought they had an idea of what this could be, they were stumped. It wasn't a stroke, bell's palsy, or mess. Michelle had given up hope of finding any answer and instead just learned to live with this life changing condition. And yet in the middle of her uncontrolled flare ups, she was given a different and even more dire diagnosis just a few years after her second daughter was born. My daughter Emily, she had some special needs and that was a very stressful three years. We were stressed to the max, and just as she started to get through some of her issues, I was hit with another blow. I found out I had stage three calling cancer in two thousand and seven, and that was such a shock, and for the next year that's what we focused on, so that my kids could have a mom I can't imagine the amount of stress you were under dealing with cancer, with raising a family, with having a career, and this unknown disease plaguing you on top of it. Did the stress of that time period bring on more episodes while you were treating the cancer. Yes. And I had figured out that if I didn't manage my stress, that the episodes would be more frequent and they would be more severe. If I would have an acute episode of something very stressful, then I could pretty much expect to wake up the next day with my face numb. Michelle was now battling not just for peace and comfort, but for her life. Her colon cancer was trying to spread to the rest of her body through her lump nodes. She would undergo multiple rounds of chemotherapy in hopes of defeating it. She actually decided to stop the chemotherapy just because it was just too much. So after her last round, she was like, we're not going to do any more chemo and we're just going to see what happens. So we waited a really long time, and then when she had her next scan, I believe in her next colonoscopy, that was when we found out like, oh, she's cancer free. And we always try to celebrate that day every year because it's really really exciting. Finally a win, getting through chemo and beating back cancer so she could be there for her family. Ever selfless and genuine, Michelle never wanted to feel like a burden to any of them, even as her flare ups continued to intensify and shift. I did notice as the years went by that they were happening more frequently. I think my stress was just so enormous that I was having a hard time staying on top of it. I had some mental health issues. My depression was pretty significant. In twenty twelve, my husband and I got divorced. That was a very stressful year, and the episodes just kept coming to the point where they were happening every four to six weeks for a while. You must have felt so overwhelmed. I did. I did. It was a very difficult time. How did it impact your your role as a mother, and how did it impact the girls. I think they just didn't really understand exactly what I was going through because I'm pretty good at hiding things from them. I didn't want them to know. I wanted to focus on them and they were growing up and moving on with their lives, and ever since I had cancer, the fears and worries that they had about me were so great that I did everything I could to keep them from mooring about me. I would say it started getting worse when I was a teenager, and that's like a time when you're really busy anyways, and any kind of disruption is just like, oh no, like we gotta work around this. And I was just really worried for her because I could see it was frustrating her and affecting her emotionally, like it was just draining because she was always on edge waiting for the next episode. A few years later, Michelle would go on to remarry, just as she did with her kids. She hit her pain from her partner at the beginning, but that didn't last very long. Todd and I get married in twenty fifteen, and he is just the most amazing man you could ever imagine. After we got married, and you know, we were living together and he was seeing me experience these episodes, he was horrified. He just could not believe that I was suffering in this way and wasn't going to the doctor about it. And I would always fire back and say, how do you go to the doctor for something that you've had for twenty three years that seems weird, Like what do you say when they say when did this start? And you say, oh, nineteen ninety nine. Even with Todd now by her side pushing her to find answers, the growing intensity of her flare ups would soon become something she couldn't just live with or ignore. All right, so tell me about the turning point when do you finally decide you've had enough and you're going to go to the doctor again. In June of twenty twenty two, I had two back to back episodes. I had a very stressful situation going on my life with work, and I could not stay on top of my stress. I had an episode with my right side of my face, and then just as soon as that started to clear up, my left side winnam and I had probably about two weeks of not feeling well with flare ups, and I just thought, I'm done. I am so done with this. I have got to find out what is wrong with me because I can't continue living like this. I was fifty years old, and I just thought, I don't want to live another fifty years like this. You finally hit the level of desperation I did, and I told my husband, I said, I'm ready to find out what this is feeling. Empowered by her supportive family, Michelle was now determined to get to the root of this after more than twenty years of suffering. This time she found a doctor that had her same determination to figure out what was going on, doctor James LaGuardia. So many patients come in to us with kind of similar stories, but she had had several years of symptoms that were slowly progressing. And when we hear that, you know, that's worrisome. When you hear a neurologic disease that's chronic and progressive, you're worry that something major is going on and they're having some kind of neurodegenerative condition common ones or things like Parkinson's or Alzheimer's disease, other conditions that you know eventually can take the person from us. So that's always a concern. So I met doctor LaGuardia. He was so kind and he was such a good listener, and he listened to me tell my story. He listened to every symptom I had and said, we're going to get to the bottom of this. And he didn't make me feel stupid, He didn't make me feel like it was weird. He just said, we'll figure this out. So he sent me for an MRI. And he did note that there were three very tiny dots on my brain. Why did those three dots stick out to you? What were your thoughts as to what could have caused them or what they could possibly indicate. What they may have been is demyelination, and that's where the central nervous system milin is affected by something, and that's what multiple sclerosis is. So whenever you see spots, especially if they're in a certain position in the brain, you're concerned about multiple sclerosis. But actually hers were fairly peripheral and fairly small in the brain. And that's not typical of MS, but it is typical of a bunch of other conditions, everything from vitamin B twelve to efficiency, to thyroid problems, lupus, rheumatoid arthriis. It's a bunch of different conditions, all of which can cause systemic inflammation, and if the inflammation affects brain arteries, a picture like that can form. And he said, do you get migraines? And I said, no, I don't get migrains, and he said, well, it's possible that you could be having something called silent migraines. I've never heard of this in my life. He said, it's possible that you could be having migraines, but they're not causing headaches, they're causing your other symptoms. Finally, Michelle had a name for the cause of her symptoms, after all this time, after all the shame and fear, she could be empowered by a proper diagnosis, silent migraine. I remember when she got diagnosed. I was on the subway and she called me and the train was getting ready to pull out, and I was like, no, I gotta get off this train. I gotta figure out what's going on. Then she explained everything, and I was just so surprised. What was her like excitement level on that phone call and what was yours, you guys must have felt for the first time in twenty years? Hope. Yeah, I was so relieved, And I could tell if she was really relieved. She wasn't scared even about what the diagnosis meant, because it had a name. I'd never heard of, silent migraines. How common are they and how would you define them? In this office, they're very common. Out in the real world not so common, and a lot of times in the literature they're referred to as either complex migraines or complicated migraines. And basically all it is is just a migraine headache that also comes packed with some other symptoms that can lead you to think something else is going on. So it'll be a physical symptom like numbness on one side of the body or weakness of an arm or leg, such that people are always concerned when the symptom is occurring. Are they having a stroke? Are they having some kind of lack of blood flow to their brain that's causing it? So that's interesting. It's not that silent migraines are so rare, it's that they're rarely diagnosed. I would say a lot of people probably have these and don't realize it. People will have a numb arm or something and they'll say, well, I pinched a nerve, or they'll have part of their body feel number tingling, and they'll think, oh, I slept on it wrong. But when it happens again and again, and especially if it happens in the face of pain, a headache, pain that usually follows those physical symptoms. Then that's when we start to think, hey, this could be a migraine syndrome, and we can try different medicines to see if we can prevent it. Doctor LaGuardia prescribed gabapentin from a shell in hopes of decreasing both the frequency and severity of her flare ups. But not even he could have imagined the life changing effect it would have. And the weeks were going by and I was not having any flareups, and I thought, this is too good to be true. There is no way this medicine has cured me. And I went back in six weeks and I said, I think you've solved a mystery. I was so excited to tell him I've not had any flare ups and I'm only taking one pill a day and I've had nothing. And even doctor LaGuardia said, I don't really understand how just one pill is keeping you from having episodes, because that's such a small dose and it doesn't even stay in your system all day. And I said, I don't really know how this is working, but I can tell you that it's working and it has cured me. Now that she's on medication that seems to have eradicated the issue. Just tell me how life is different. How's your mom different. She is able to go through life a lot more joyfully knowing that she doesn't have to just always be waiting for this other shoe to drop in terms of her migraines, Like I feel like she can just make plans and think about the future without worrying that she's going to have a migraine. I just feel like this burden is off my shoulders. I feel so much happier, and I'm not always worrying about the next flare up. And even though I'm still working to maintain my stress level, I know that in my greatest time of stress, I'm not going to have a flare up to add to that stress. After dealing with two decades of mysterious, debilitating symptoms on top of battling cancer, there was finally a calm that came with a name for her condition, one she hopes to impart on anyone experiencing which she's been through. I really couldn't find a whole lot of information online about it. I looked Facebook groups, I looked under hashtags, and I still do this day, have not met anyone else that I know personally that has silent migraines or that has them presented the way I do. I would love to find someone else that has experienced this well. Who knows, maybe someone's listening right now, and because maybe you'll find your silent migrain twin. Yes, I wanted to share my story because I want people to know that it could present this way. But if there's someone else out there who has the same presentation, and I could help someone else. As for doctor LaGuardia, he continues to impart a natural passion and optimism for the work that he does. As for the life changing impact his diagnosis has had on Michelle's life, he's gratified. If I can do that silly old word, gratifying. It's nice to hear something like that. So it's nice to hear something positive because most of what you hear is negative. But I guess the point would be, don't give up. If the symptoms are ongoing for a number of months or years, even if they're progressive, chances are there's something that's fixable. And whether you use doctor Google or you try a new doc, or ask your own primary care provider to just take another look at you you know, step back, take another fresh look, maybe repeat. Some studies, a lot of times chronic issues can be, if not completely resolved, at least made quite a bit better. What do you want people to take away from your story? I want people to know that you shouldn't be afraid to find answers, even if it's something that appears somewhat mild. Even though it was something that I suffered with but was able to push through and go on with my life, it still impacted me in many ways. And I want people to know that you should try to find answers, that something so simple has to be coming from somewhere. There has to be a reason and why we are suffering. My name is Michelle, and for twenty three years I suffered with a mysterious illness that was finally diagnosed as silent migraines. We first heard about Michelle's story when she reached out to us directly to share how much this show has meant to her. If you have a mysterious diagnosis journey that you think would help other people to hear, please email us at Symptomatic at iHeartMedia dot com. We've genuinely been blown away by how much the show's resonated with our listeners, and would love to hear more of your stories. On the next episode of Symptomatic, Chuck's raging fevers become increasingly frequent and the various attempts at treatment only add to the ticking clock of his symptoms and diagnosis. I started getting pretty significant rashes on my body, and my heart function had just taken a nose dive, and they really had to hit me with a couple of days a high steroids just to try to get the heart to recover. It would take one very special and dedicated doctor to redirect the course of his symptoms. Symptomatic a Medical Mystery podcast is a production of Ruby Studio from iHeartMedia. Our show is hosted by me Lauren Bright Pacheco. Executive producers are Matt Romano and myself. Our EP of post production is James Foster. Our producers are Sierra Kaiser and John Irwin. And this episode was researched by Diana Davis
