Speaker 1: Towards the end of the day, I thought, well, I
Speaker 1: think I know what doesn't feel right. My scalp is
Speaker 1: tingly and my face feels numb. That's so unusual.
Speaker 2: I definitely was very cautious, you know, and cautious making
Speaker 2: sure my sister didn't drink after her or get the
Speaker 2: germs either.
Speaker 3: She had had several years of symptoms that were slowly progressing.
Speaker 3: And when we hear that, you know, that's worrisome.
Speaker 1: It's such a baffling set of symptoms. We felt like
Speaker 1: perhaps he thought that I was just making this up,
Speaker 1: but the episodes just kept coming.
Speaker 4: How terrifying would it be to fight an unknown enemy,
Speaker 4: one you didn't recognize and didn't see coming. What if
Speaker 4: that enemy was coming from within a disease that even
Speaker 4: doctors couldn't identify. Nearly half of all Americans suffer from
Speaker 4: some chronic illness, and many struggle for an accurate diagnosis.
Speaker 4: These are their stories and Lauren Bret Pacheco and this
Speaker 4: is symptomatic. When you talk with Michelle L. Frank, the
Speaker 4: first thing you notice is her warm personality and natural curiosity.
Speaker 4: You can actually hear the smile she carries around with
Speaker 4: her basically all the time. As the mother of three daughters,
Speaker 4: Michelle attributes her positivity to just one thing, coffee.
Speaker 5: I'm all about the coffee. Me too.
Speaker 4: I like to say the color is dark, but the
Speaker 4: power is clear.
Speaker 1: Yes, my husband sometimes says, can we go just thirty
Speaker 1: minutes without talking about coffee? But I have a lot
Speaker 1: of hobbies and different interests, and I love jigsaw puzzles.
Speaker 5: I'm a volunteer for Find a Grave.
Speaker 1: I love cemeteries and so I help families find their
Speaker 1: loved ones cemetery stones.
Speaker 5: So that's something fun I do.
Speaker 4: Michelle is very much a family oriented person, her pride
Speaker 4: and joy being her two daughters who are up at school,
Speaker 4: her stepdaughter, and three step grandsons.
Speaker 2: I think she's somebody who has a lot of interest
Speaker 2: and a lot of hobbies. She loves learning and sharing
Speaker 2: what she's learned with other people. I think she's someone
Speaker 2: who just loves knowledge.
Speaker 4: That's her eldest daughter, Meghan. Meghan is currently attending law
Speaker 4: school in New York City, but even at a distance,
Speaker 4: Meghan and Michelle maintain a strong bond as mother and daughter.
Speaker 1: Meghan and I are very close. We can pretty much
Speaker 1: just say anything or share anything.
Speaker 5: You know.
Speaker 1: We've been through a lot of changes in our life,
Speaker 1: and she's watched me struggle.
Speaker 2: We definitely bonded a lot watching medical TV shows. I
Speaker 2: don't know if she mentioned to you that she loved
Speaker 2: the show Mystery Diagnosis and we would always watch that together.
Speaker 4: That's so wild, particularly since your mom was living basically
Speaker 4: with a medical mystery.
Speaker 5: Of her own. Yeah, exactly, a.
Speaker 4: Medical mystery that would plague Michelle for over twenty years.
Speaker 4: Michelle's symptoms started just after her eldest daughter's first birthday.
Speaker 4: It was the late nineties and his new parents. Michelle
Speaker 4: and her then husband were soaking in all the memories
Speaker 4: seeing their child hit another major milestone.
Speaker 1: We had a big party for her, and life was
Speaker 1: really good. We had settled into a routine. I was
Speaker 1: a working mom, but we spent every minute we could
Speaker 1: with her when we weren't working, and life was really,
Speaker 1: really good. And then, just a couple of weeks after
Speaker 1: her first birthday, I was at work one day and
Speaker 1: something felt off, but I couldn't quite tell what it was.
Speaker 1: Something just didn't feel right. Towards the end of the day,
Speaker 1: I thought, well, I think I know what doesn't feel right.
Speaker 1: My scalp is tingly, and my face feels numb, and
Speaker 1: I thought.
Speaker 5: That's so unusual.
Speaker 1: And I was working at a hospital at the time,
Speaker 1: in outpatient rehab, and so I worked with physical therapists
Speaker 1: and occupational therapists, and they all panicked and thought, you
Speaker 1: know what if I was having a stroke.
Speaker 4: An overall feeling of achiness, numbness, and tangling in her
Speaker 4: scalp and face. The initial signs were pointing to a
Speaker 4: potentially severe issue bubbling under the surface, but she waited
Speaker 4: until the next day to go to her general practitioner,
Speaker 4: trying not to overplay the situation.
Speaker 1: So I made an appointment the next morning to see
Speaker 1: my doctor, and he was just perplexed. He didn't really
Speaker 1: know what it was. He ruled out Bell's palsy because
Speaker 1: I didn't have the drooping. My face didn't droop. It
Speaker 1: was more of a sensory issue, not a motor issue.
Speaker 1: My scalp tingled, my eyelid felt heavy, my face was numb,
Speaker 1: and it interestingly, it stopped right at midline. It did
Speaker 1: not cross the mid line.
Speaker 4: So a numbness that mimicked partial paralysis, presenting only on
Speaker 4: one side of her face. In addition to other symptoms.
Speaker 1: My gums were swollen, and curiously, that side of my
Speaker 1: throat was sore, which still to this day. I just
Speaker 1: it's such a baffling set of symptoms.
Speaker 4: When you say numbness and soreness in the throat and
Speaker 4: numbness on the face. Did it feel like you had
Speaker 4: had novacaine?
Speaker 1: It very much felt like I had been to the
Speaker 1: dentist and it was wearing off, very much so. And
Speaker 1: as the episode would fade over the next couple of days,
Speaker 1: the swelling would go down in my gums and they
Speaker 1: would feel kind of raw almost again, almost like I
Speaker 1: had been to the dentist and received a shot or something.
Speaker 5: My gums were very sensitive.
Speaker 4: How long did the first episode last.
Speaker 1: It lasted about two or three days, and my doctor
Speaker 1: could not figure out what it was. He said, it
Speaker 1: could just be a fluke. If it happens again, call
Speaker 1: us immediately, and he sent me on my way.
Speaker 4: Michelle returned to normal life for a few weeks. The
Speaker 4: doctors had ruled out a stroke in Bell's palsy, but
Speaker 4: still didn't have any real answers. This was just the
Speaker 4: beginning of the havoc. Her unknown condition would reach on
Speaker 4: her life, paging doctor Lund to the nurses station.
Speaker 1: So well, probably about a month later, my mom was
Speaker 1: having surgery. We're all very close to my mom, and
Speaker 1: it was a very stressful time. We were all sitting
Speaker 1: in the hospital waiting for the surgery start and waiting
Speaker 1: for an update, and I was just so worried. And
Speaker 1: as we're sitting there waiting, I realized, oh no, my
Speaker 1: face is numb again, same side, same side, and my
Speaker 1: heart just sunk.
Speaker 5: I just thought, no, not now.
Speaker 1: The focus is supposed to be on my mom today.
Speaker 1: This day is not about me. And I was just devastated.
Speaker 1: So I did what they told me to do. I
Speaker 1: called my doctor's office and said, I'm at the hospital
Speaker 1: with my mom and my face is numb again, and
Speaker 1: they said you need to go down to the er
Speaker 1: and seek treatment immediately. You could be having a stroke.
Speaker 4: We don't know what's going through your head at that moment.
Speaker 4: That must have been such a conflict between wanting to
Speaker 4: be there for your mother and having to deal with
Speaker 4: that kind of crisis.
Speaker 1: It felt horrible because I didn't want the attention to
Speaker 1: be on me. This day was not about me, and
Speaker 1: I felt embarrassed that I was going to have to
Speaker 1: tell my sisters, Oh, hey, I think something's wrong with me.
Speaker 1: I'm going to have to go down to the er.
Speaker 1: And of course they didn't. They didn't react, and the
Speaker 1: way I was worried they would. Of course they were supportive,
Speaker 1: and they said get down there now, and they waited
Speaker 1: on my mom and I went downstairs to the er.
Speaker 1: They ran a cat scan, ran some blood work. They said,
Speaker 1: we can't find anything wrong. You seem fine.
Speaker 4: How did that feel?
Speaker 1: I felt really dumb, like I had caused all this drama.
Speaker 1: You know, we were trying not to let my mom know.
Speaker 1: She was out of surgery by this time. And I'm like,
Speaker 1: don't tell mom. You're never too old to say, don't
Speaker 1: tell mom.
Speaker 4: Even though her sisters reacted with support, Michelle was starting
Speaker 4: to internalize the shame and guilt from navigating her uncontrollable,
Speaker 4: unexplainable symptoms, which remained invisible to those around her. As
Speaker 4: the months go on, the symptoms started to get worse.
Speaker 4: In addition to the numbness in her face and overall
Speaker 4: body aches, her vision was starting to be affected every
Speaker 4: time she had a flare up. Michelle then gets referred
Speaker 4: to a neurologist to try and reassess her symptoms.
Speaker 1: So I did go to a neurologist. He sent me
Speaker 1: for an MRI. We went for the follow up. He
Speaker 1: said the MRI was fine. He couldn't find anything wrong
Speaker 1: with me, because he had thought maybe I had multiple
Speaker 1: sclerosis and that was the thing they were trying to
Speaker 1: rule out. He said, we don't know what this is,
Speaker 1: and he asked so many questions, and I felt like
Speaker 1: he was trying to trip me up. Her husband was
Speaker 1: confused too, and he just kept asking questions over and
Speaker 1: over again, and about what side it was, and well,
Speaker 1: if it was this side, or how did I know
Speaker 1: that I was having a flare up if I wasn't
Speaker 1: touching my face, And it was a very frustrating visit.
Speaker 4: What was the implication that it was all in your
Speaker 4: head or you were making it up?
Speaker 1: Yes, we felt like perhaps he thought that I was
Speaker 1: just either making this up or I wasn't accurately portraying
Speaker 1: what my symptoms were.
Speaker 4: Michelle was starting to feel both frustrated and scared. No
Speaker 4: one seemed to have the answers. Some people didn't even
Speaker 4: seem to believe what she was saying was true. She
Speaker 4: started second guessing herself. Was she making too big a
Speaker 4: deal out of this? Were the symptoms real? They were
Speaker 4: very real, so real that her daughter, Megan, has distinct
Speaker 4: memories of her flare ups all throughout her childhood.
Speaker 2: She would be like, Oh, my face is going down again.
Speaker 2: And it was almost like I would get this sense
Speaker 2: of dread because it's like, oh, she's going to be
Speaker 2: sick for a few days. Like and also just like
Speaker 2: frustration that we just didn't know what it was, you
Speaker 2: know what I mean, And we didn't know the best
Speaker 2: way to treat it or anything.
Speaker 4: So both girls, for the majority of their lives watched
Speaker 4: you struggle with an undiagnosed illness.
Speaker 1: Yes they did. They didn't really understand it. I kept
Speaker 1: it quiet most of the time, but they knew when
Speaker 1: I was having a flare up. Sometimes I would, you know,
Speaker 1: make a passing comment of oh, my face is hurting today,
Speaker 1: or I'm having a flare up.
Speaker 5: Just be patient with me.
Speaker 2: She would almost start acting like someone who's coming down
Speaker 2: with the flu. You know, she would be laying down,
Speaker 2: she'd be drinking a lot of electro lights. She would
Speaker 2: be in the dark, trying to minimize her like sensitivity
Speaker 2: to light. You would notice that she was lethargic and
Speaker 2: be like, oh, well, she's gonna be sick for a
Speaker 2: few days, so you know, batten down the hatches a
Speaker 2: little bit because mom's gonna need a little extra help.
Speaker 4: When Michelle was hit with another flare up a few
Speaker 4: months after visiting the neurologist, she was seen by a
Speaker 4: nurse practitioner who had a confident new idea of what
Speaker 4: it could be.
Speaker 1: It was a very stressful time and my family's life.
Speaker 1: My husband was starting a new business, and looking back,
Speaker 1: I can remember how stressful that was. So I had
Speaker 1: another flare up, went to the doctor and there was
Speaker 1: a nurse practitioner there.
Speaker 5: This was the first time I had met her.
Speaker 1: She didn't really know me, and her take on the
Speaker 1: situation was, I think it could be related to herpes. Wow,
Speaker 1: that's unexpected. I don't have herpes, she said, Well, more
Speaker 1: of the oral herpies tie, the kind of herpies that
Speaker 1: causes fever blisters. She said, perhaps you're having outbreaks or
Speaker 1: flare up like you would fever blisters. And so she
Speaker 1: prescribed me a steroid and herpie's medication, and I felt
Speaker 1: so embarrassed. I felt like that was such a strange
Speaker 1: take on it. But when a doctor or a nurse
Speaker 1: tells you something, you know, you keep that in the
Speaker 1: back of your mind as a possibility. And I can
Speaker 1: remember going to the pharmacy and there was a young
Speaker 1: girl there, the pharmacy tech, and she looked at the
Speaker 1: medication on the label, and then she looked at me
Speaker 1: and kind of stickered, and I just thought, I'm not
Speaker 1: taking this medicine. But I still kept it in the
Speaker 1: back of my mind that what if it is What
Speaker 1: if it is related? Because it is flaring up and
Speaker 1: during stressful times, So what if that's it.
Speaker 4: Michelle again felt the pain of growing guilt and shame
Speaker 4: tied to her flare ups. She now faced an additional
Speaker 4: stigma of a Herpe's diagnosis. Feeling misguided, Michelle started shutting down,
Speaker 4: even ignoring her prescribed treatment.
Speaker 1: I pretty much kept it all inside because it was
Speaker 1: embarrassing and I've never met anyone that had this, so
Speaker 1: I didn't really want to talk about it because it
Speaker 1: just felt like something weird. I didn't really have anyone
Speaker 1: to share it with.
Speaker 4: Though she didn't take the herpes medicine, the idea that
Speaker 4: a virus could be the underlying cause always lingered in
Speaker 4: the back of her mind. She started to worry about
Speaker 4: infecting her kids.
Speaker 2: She would basically act like she was contagious because we
Speaker 2: thought it was a virus, so it would be like
Speaker 2: treat her as you would treat someone with the flu,
Speaker 2: where you didn't want to touch or drink after them
Speaker 2: or anything like that.
Speaker 1: I remember the first time my daughter called me out
Speaker 1: on it and said, why, why will you not let
Speaker 1: me drink after you today? And I said, well, I'm
Speaker 1: concerned that this problem I have with my face could
Speaker 1: be contagious. What if it's contagious, what if it's viral
Speaker 1: in nature? And I don't want you to get it?
Speaker 1: And she was stunned. She had no idea that all
Speaker 1: of these years I had worried that I could give
Speaker 1: it to her.
Speaker 2: I was always really nervous that I was going to
Speaker 2: get it too, So I definitely was very cautious, you know,
Speaker 2: and cautious making sure my sister didn't drink after her
Speaker 2: or get the germs either.
Speaker 4: By this time, Michelle had been battling her undiagnosed symptoms
Speaker 4: for nearly a decade and.
Speaker 1: At that point, I was done. I was completely done.
Speaker 1: I'm not seeking treatment for this. And this sounds really crass,
Speaker 1: but I thought, it hasn't killed me. It hasn't killed
Speaker 1: me yet. Maybe it's nothing. Maybe it's just something that
Speaker 1: I'm going to have to live with, never imagining that
Speaker 1: I really would be living with it for so many years.
Speaker 4: Okay, So as the episodes continue and progress, how do
Speaker 4: they change and how does the time period between each
Speaker 4: episode alter.
Speaker 1: The time period between episodes would vary. Sometimes I could
Speaker 1: go three months without an episode, and I would consider
Speaker 1: that pretty lucky, and sometimes I would get them once
Speaker 1: a month, just randomly. And the episodes could be mild
Speaker 1: to moderate, or they could be pretty severe in nature.
Speaker 1: There were times when it was a struggle just to
Speaker 1: get out of bed because I felt so sick, because
Speaker 1: they would give me the feeling of having the flu.
Speaker 1: Sometimes I would get a headache, but it wasn't a
Speaker 1: debilitating headache.
Speaker 5: Sometimes it would just take a little bit.
Speaker 1: And it sounds crazy, it sounds completely crazy, but that's
Speaker 1: that's what I lived with.
Speaker 5: That's how it happened for so many years.
Speaker 4: Michelle just learned to live with it, juggling her symptoms
Speaker 4: alongside with work and caring for her young family, but
Speaker 4: soon back to back flare ups would land her in
Speaker 4: the hospital where a new doctor was going to take
Speaker 4: a closer look at what was going on.
Speaker 1: I had an episode with my right side of my face,
Speaker 1: and then just as soon as that started to clear up,
Speaker 1: my left side whetnam and I just thought, I'm done
Speaker 1: with this. I have got to find out what is
Speaker 1: wrong with me.
Speaker 4: We'll be right back with Symptomatic, a Medical Mystery Podcast.
Speaker 4: Now back to Symptomatic a Medical Mystery Podcast. Michelle L.
Speaker 4: Frank was living with a mysterious unknown condition that continually
Speaker 4: flared up at the worst moments in the most stressful times,
Speaker 4: making it hard for her to even get out of
Speaker 4: bed on some days, numbness, overall, body aches impacted. Every
Speaker 4: time a doctor thought they had an idea of what
Speaker 4: this could be, they were stumped. It wasn't a stroke,
Speaker 4: bell's palsy, or MS. Michelle had given up hope of
Speaker 4: finding any answer and instead just learned to live with
Speaker 4: this life changing condition. And yet in the middle of
Speaker 4: her uncontrolled flare ups, she was given a different and
Speaker 4: even more dire diagnosis. Just a few years after her
Speaker 4: second daughter was born, my.
Speaker 1: Daughter Emily, she had some special needs and that was
Speaker 1: a very stressful three years. We were stressed to the max,
Speaker 1: and just as she started to get through some of
Speaker 1: her issues, I was hit with another blow. I found
Speaker 1: out I had stage three colon cancer in two thousand
Speaker 1: and seven, and that was such a shock, and for
Speaker 1: the next year that's what we focused on, so that
Speaker 1: my kids could have a mom.
Speaker 4: I can't imagine the amount of stress you were under
Speaker 4: dealing with cancer, with raising a family, with having a career,
Speaker 4: and this unknown disease plaguing you on top of it.
Speaker 4: Did the stress of that time period bring on more
Speaker 4: episodes while you were treating the cancer.
Speaker 1: Yes, And I had figured out that if I didn't
Speaker 1: manage my stress, that the episodes would be more frequent
Speaker 1: and they would be more severe. If I would have
Speaker 1: an acute episode of something very stressful, then I could
Speaker 1: pretty much expect to wake up the next day with
Speaker 1: my face numb.
Speaker 4: Michelle was now battling not just for peace and comfort,
Speaker 4: but for her life. Her colon cancer was trying to
Speaker 4: spread to the rest of her body through her lump nodes.
Speaker 4: She would undergo multiple rounds of chemotherapy in hopes of
Speaker 4: defeating it.
Speaker 2: She actually decided to stop the chemotherapy just because it
Speaker 2: was just, you know, too much. So after her last round,
Speaker 2: she was like, we're not going to do any more
Speaker 2: chemo and we're just going to see what happens. So
Speaker 2: we waited a really long time, and then when she
Speaker 2: had her next scan, I believe in her next colonoscopy,
Speaker 2: that was when we found out, like, oh, she's cancer free.
Speaker 2: And we always try to celebrate that day every year
Speaker 2: because it's really really exciting.
Speaker 4: Finally a win, getting through chemo and beating back cancer,
Speaker 4: so she could be there for her family. Ever selfless
Speaker 4: and genuine, Michelle never wanted to feel like a burden
Speaker 4: to any of them. Even as her flare ups continued
Speaker 4: to intensify and shift.
Speaker 1: I did notice as the years went by that they
Speaker 1: were happening more frequently. I think my stress was just
Speaker 1: so enormous that I was having a hard time staying
Speaker 1: on top of it. I had some mental health issues.
Speaker 1: My depression was pretty significant. In twenty twelve, my husband
Speaker 1: and I got divorced. That was a very stressful year,
Speaker 1: and the episodes just kept coming to the point where
Speaker 1: they were happening every four to six weeks for a while.
Speaker 4: You must have felt so overwhelmed.
Speaker 5: I did. I did. It was a very difficult time.
Speaker 4: How did it impact your your role as a mother,
Speaker 4: and how did it impact the girls.
Speaker 5: I think they just didn't really understand.
Speaker 1: Exactly what I was going through because I'm pretty good
Speaker 1: at hiding things from them. I didn't want them to know.
Speaker 1: I wanted to focus on them, and they were growing
Speaker 1: up and moving on with their lives. And ever since
Speaker 1: I had cancer, the fears and worries that they had
Speaker 1: about me were so great that I did everything I
Speaker 1: could to keep them for worrying about me.
Speaker 2: I would say it started getting worse when I was
Speaker 2: a teenager, and that's like a time when you're really
Speaker 2: busy anyways, and any kind of disruption is just like,
Speaker 2: oh no, Like we got to work around this. And
Speaker 2: I was just really worried for her because I could
Speaker 2: see it was frustrating her and affecting her emotionally, like
Speaker 2: it was just draining because she was always on edge
Speaker 2: waiting for the next episode.
Speaker 4: A few years later, Michelle would go on to remarry,
Speaker 4: just as she did with her kids, she hid her
Speaker 4: pain from her partner at the beginning, but that didn't
Speaker 4: last very long.
Speaker 1: Todd and I got married in twenty fifteen, and he
Speaker 1: is just the most amazing man you could ever imagine.
Speaker 1: After we got married, and you know, we were living
Speaker 1: together and he was seeing me experience these episodes, he
Speaker 1: was horrified. He just could not believe that I was
Speaker 1: suffering in this sway and wasn't going to the doctor
Speaker 1: about it. And I would always fire back and say,
Speaker 1: how do you go to the doctor for something that
Speaker 1: you've had for twenty three years that seems weird?
Speaker 5: What do you say when they say when did this start?
Speaker 5: And you say, oh, nineteen ninety nine.
Speaker 4: Even with Todd now by her side pushing her to
Speaker 4: find answers, the growing intensity of her flare ups would
Speaker 4: soon become something she couldn't just live with or ignore.
Speaker 4: All right, so tell me about the turning point, when
Speaker 4: do you finally decide you've had enough and you're going
Speaker 4: to go to the doctor again.
Speaker 1: In June of twenty twenty two, I had two back
Speaker 1: to back episodes. I had a very stressful situation going
Speaker 1: on my life with work, and I could not stay
Speaker 1: on top of my stress. I had an episode with
Speaker 1: my right side of my face, and then just as
Speaker 1: soon as that started to clear up, my left side
Speaker 1: whetnam and I had probably about to weeks of not
Speaker 1: feeling well with flare ups, and I just thought, I'm done.
Speaker 5: I am so done with this.
Speaker 1: I have got to find out what is wrong with me,
Speaker 1: because I can't continue living like this. I was fifty
Speaker 1: years old, and I just thought, I don't want to
Speaker 1: live another fifty years like this.
Speaker 4: You finally hit the level of desperation.
Speaker 1: I did, and I told my husband, I said, I'm
Speaker 1: ready to find out.
Speaker 5: What this is.
Speaker 4: Feeling. Empowered by her supportive family, Michelle was now determined
Speaker 4: to get to the root of this. After more than
Speaker 4: twenty years of suffering. This time, she found a doctor
Speaker 4: that had her same determination to figure out what was
Speaker 4: going on, Doctor James LaGuardia.
Speaker 3: So many patients come in to us with kind of
Speaker 3: similar stories, but she had had several years of symptoms
Speaker 3: that were slowly progressing. And when we hear that, you
Speaker 3: know that's worrisome. And when you hear a neurologic disease
Speaker 3: that's chronic and progressive, you worry that something major is
Speaker 3: going on. And they are having some kind of neurodegenerative
Speaker 3: condition common ones, or things like Parkinson's or Alzheimer's disease,
Speaker 3: other conditions that eventually can take the person from us.
Speaker 5: So that's always a concern. So I met doctor LaGuardia.
Speaker 1: He was so kind and he was such a good listener,
Speaker 1: and he listened to me tell my story. He listened
Speaker 1: to every symptom I had and said, we're going to
Speaker 1: get to the bottom of this. And he didn't make
Speaker 1: me feel stupid, he didn't make me feel like it
Speaker 1: was weird.
Speaker 5: He just said, we'll figure this out.
Speaker 1: So he sent me for an MRI, and he did
Speaker 1: note that there were three very tiny dots on my brain.
Speaker 4: Why did those three dots stick out you? What were
Speaker 4: your thoughts as to what could have caused them or
Speaker 4: what they could possibly indicate.
Speaker 3: What they may have been is demyelination, and that's where
Speaker 3: the central nervous system, myelin, is affected by something, and
Speaker 3: that's what multiple sclerosis is. So whenever you see spots,
Speaker 3: especially if they're in a certain position in the brain,
Speaker 3: you're concerned about multiple sclerosis. But actually hers were fairly
Speaker 3: peripheral and fairly small in the brain and that's not
Speaker 3: typical of MS, but it is typical of a bunch
Speaker 3: of other conditions, everything from vitamin B twelve deficiency to
Speaker 3: thyroid problems, lupus, rheumatoid arthrisis. It's a bunch of different conditions,
Speaker 3: all of which can cause systemic inflammation, and if the
Speaker 3: inflammation affects brain arteries, a picture like that can form.
Speaker 1: And he said, do you get migraines? And I said, no,
Speaker 1: I don't get migraines. And he said, well, it's possible
Speaker 1: that you could be having something called silent migraines. I'd
Speaker 1: never heard of this in my life. He said, it's
Speaker 1: possible that you could be having migraines, but they're not
Speaker 1: causing headaches.
Speaker 5: They're causing your other symptoms.
Speaker 4: Finally, Michelle had a name for the cause of her symptoms,
Speaker 4: after all this time, after all the shame and fear,
Speaker 4: she could be empowered by a proper diagnosis, silent migraine.
Speaker 2: I remember when she got diagnosed. I was on the
Speaker 2: subway and she called me and the train was getting
Speaker 2: ready to pull out, and I was like, no, I
Speaker 2: got to get off this train.
Speaker 5: I got to figure out what's going on.
Speaker 2: Then she explained everything, and I was just so surprised.
Speaker 4: What was her like excitement level on that phone call
Speaker 4: and what was yours? You guys must have felt for
Speaker 4: the first time in twenty years?
Speaker 5: Hope.
Speaker 2: Yeah, I was so relieved, and I could tell if
Speaker 2: she was really relieved. She wasn't scared even about what
Speaker 2: the diagnosis meant because it had a name.
Speaker 4: I'd never heard of. Silent migraines. How common are they
Speaker 4: and how would you define them?
Speaker 3: In this office? They're very common out in the real
Speaker 3: world not so common, and a lot of times in
Speaker 3: the literature they're referred to as either complex migraines or
Speaker 3: complicated migraines. And basically all it is is just a
Speaker 3: migraine headache that also comes packed with some other symptoms
Speaker 3: that can lead you to think something else is going on.
Speaker 3: So it'll be a physical symptom like numbness on one
Speaker 3: side of the body or weakness of an armor laid
Speaker 3: such that people are always concerned when the symptom is occurring.
Speaker 3: Are they having a stroke? Are they having some kind
Speaker 3: of lack of blood flow to their brain that's causing it?
Speaker 4: So that's interesting. It's not that silent migraines are so rare.
Speaker 4: It's that they're rarely diagnosed.
Speaker 3: I would say a lot of people probably have these
Speaker 3: and don't realize it. People you know will have a
Speaker 3: numb arm or something and they'll say, well, I pinched
Speaker 3: a nerve, or they'll have part of their body feel
Speaker 3: numb or tingling, and they'll think, oh, I slept on
Speaker 3: it wrong. But when it happens again and again, and
Speaker 3: especially if it happens in the face of pain, a headache,
Speaker 3: pain that usually follows those physical symptoms, then that's when
Speaker 3: we start to think, hey, this could be a migraine syndrome,
Speaker 3: and we can try different medicines to see if we
Speaker 3: can prevent it.
Speaker 4: Doctor LaGuardia prescribed gabapentin from a shell in hopes of
Speaker 4: decreasing both the frequency and severity of her flare ups.
Speaker 4: But not even he could have imagined the life changing
Speaker 4: effect it would have.
Speaker 1: And the weeks were going by and I was not
Speaker 1: having any flare ups, and I thought, this is too
Speaker 1: good to be true. There is no way this medicine
Speaker 1: has cured me. And I went back in six weeks
Speaker 1: and I said, I think you've solved a mystery. I
Speaker 1: was so excited to tell him I've not had any
Speaker 1: flare ups and I'm only taking one pill a day
Speaker 1: and I've had nothing. And even doctor Laguardi I said,
Speaker 1: I don't really understand how just one pill is keeping
Speaker 1: you from having episodes because that's such a small dose
Speaker 1: and it doesn't even stay in your system all day.
Speaker 1: And I said, I don't really know how this is working,
Speaker 1: but I can tell you that it's working and it
Speaker 1: has cured me.
Speaker 4: Now that she's on medication that seems to have eradicated
Speaker 4: the issue. Just tell me how life is different. How's
Speaker 4: your mom different?
Speaker 2: She able to go through life a lot more joyfully
Speaker 2: knowing that she doesn't have to just always be waiting
Speaker 2: for this other shoe to drop in terms of her migraines,
Speaker 2: Like I feel like she can just make plans and
Speaker 2: think about the future without worrying that she's going to
Speaker 2: have a migraine.
Speaker 1: I just feel like this burden is off my shoulders.
Speaker 1: I feel so much happier and I'm not always worrying
Speaker 1: about the next flare up. And even though I'm still
Speaker 1: working to maintain my stress level, I know that in
Speaker 1: my greatest time of stress, I'm not going to have
Speaker 1: a flare up to add to that stress.
Speaker 4: After dealing with two decades of mysterious, debilitating symptoms on
Speaker 4: top of battling cancer, there was finally a calm that
Speaker 4: came with a name for her condition, one she hopes
Speaker 4: to impart on anyone experiencing which she's been through.
Speaker 1: I really couldn't find a whole lot of information online
Speaker 1: about it. I looked Facebook, I looked under hashtags, and
Speaker 1: I still do this day, have not met anyone else
Speaker 1: that I know personally that has silent migraines or that
Speaker 1: has them presented the way I do. I would love
Speaker 1: to find someone else that has experienced this well.
Speaker 4: Who knows. Maybe someone's listening right now, and yes, maybe
Speaker 4: you'll find your silent migraine twin.
Speaker 1: Yes, I wanted to share my story because I want
Speaker 1: people to know that it could present this way. But
Speaker 1: if there's someone else out there who has the same presentation,
Speaker 1: and I could help someone else.
Speaker 4: As for doctor LaGuardia, he continues to impart a natural
Speaker 4: passion and optimism for the work that he does. As
Speaker 4: for the life changing impact his diagnosis has had on
Speaker 4: Michelle's life, He's gratified if I.
Speaker 3: Can use that silly old word gratifying. It's nice to
Speaker 3: hear something like that. So it's nice to hear something
Speaker 3: positive because most of what you hear is negative. But
Speaker 3: I guess the point would be, don't give up. If
Speaker 3: the symptoms are ongoing for a number of months or years,
Speaker 3: even if they're progressive, chances are there's something that's fixable.
Speaker 3: And whether you use doctor Google or try a new doc,
Speaker 3: or ask your own primary care provider to just take
Speaker 3: another look at you, you know, step back, take another
Speaker 3: fresh look, maybe repeat. Some studies, a lot of times
Speaker 3: chronic issues can be, if not completely resolved, at least
Speaker 3: made quite a bit better.
Speaker 4: What do you want people to take away from your story.
Speaker 1: I want people to know that you shouldn't be afraid
Speaker 1: to find answers, even if it's something that appears somewhat mild.
Speaker 1: Even though it was something that I suffered with but
Speaker 1: was able to push through and go on with my life,
Speaker 1: it's still impacted me in many ways, and I want
Speaker 1: people to know that you should try to find answers,
Speaker 1: that something so simple has to be coming from somewhere.
Speaker 1: There has to be a reason why you are suffering.
Speaker 1: My name is Michelle, and for twenty three years, I
Speaker 1: suffered with a mysterious illness that was finally diagnosed as
Speaker 1: silent migraines.
Speaker 4: We first heard about Michelle's story when she reached out
Speaker 4: to us directly to share how much this show has
Speaker 4: meant to her. If you have a mysterious diagnosis journey
Speaker 4: that you think would help other people to hear, please
Speaker 4: email us at Symptomatic at iHeartMedia dot com. We've genuinely
Speaker 4: been blown away by how much the show's resonated with
Speaker 4: our listeners and would love to hear more of your stories.
Speaker 4: On the next episode of Symptomatic, Chuck's raging fevers become
Speaker 4: increasingly frequent, and the various attempts at treatment only add
Speaker 4: to the ticking clock of his symptoms and diagnosis.
Speaker 6: I started getting pretty significant rashes on my body, and
Speaker 6: my heart function had just taken a nose dive, and
Speaker 6: they really had to hit me with a couple of
Speaker 6: days of high steroids just to try to get the
Speaker 6: heart to recover.
Speaker 4: It would take one very special and dedicated doctor to
Speaker 4: redirect the course of his symptoms. Symptomatic a medical mystery
Speaker 4: podcast is a production of Ruby Studio from iHeartMedia. Our
Speaker 4: show is hosted by me Lauren bry Pacheco. Executive producers
Speaker 4: are Matt Romano and myself. Our EP of post production
Speaker 4: is James Foster. Our producers are Sierra Kaiser and John Irwin.
Speaker 4: And this episode was researched by Diana Davis