October 3, 2023 • 36 mins
After the birth of her first child, Michele was hit with the onset of sporadic tingling and numbness on alternating sides of her face. Despite enduring years of the mysterious symptoms, she had given up hope of finding the root cause. Michele eventually built up walls of shame because of the uncontrollable flare-ups. It was the concern of her family and the unwavering support of her new partner that would reignite her hunt for a proper diagnosis.
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Speaker 1 (00:04):
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. That's so unusual.
Speaker 2 (00:14):
I definitely was very cautious, you know, and cautious making
sure my sister didn't drink after her or get the
germs either.
Speaker 3 (00:21):
She had had several years of symptoms that were slowly progressing.
And when we hear that, you know, that's worrisome.
Speaker 1 (00:30):
It's such a baffling set of symptoms. We felt like
perhaps he thought that I was just making this up,
but the episodes just kept coming.
Speaker 4 (00:48):
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.
(01:12):
These are their stories and Lauren Bret Pacheco and this
is symptomatic. When you talk with Michelle L. Frank, the
(01:38):
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.
Speaker 5 (01:54):
I'm all about the coffee. Me too.
Speaker 4 (01:57):
I like to say the color is dark, but the
power is clear.
Speaker 1 (02:00):
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.
Speaker 5 (02:13):
I'm a volunteer for Find a Grave.
Speaker 1 (02:15):
I love cemeteries and so I help families find their
loved ones cemetery stones.
Speaker 5 (02:21):
So that's something fun I do.
Speaker 4 (02:23):
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.
Speaker 2 (02:32):
I think she's somebody who has a lot of interest
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.
Speaker 4 (02:45):
That's her eldest daughter, Meghan. Meghan is currently attending law
school in New York City, but even at a distance,
Meghan and Michelle maintain a strong bond as mother and daughter.
Speaker 1 (02:56):
Meghan and I are very close. We can pretty much
just say anything or share anything.
Speaker 5 (03:03):
You know.
Speaker 1 (03:03):
We've been through a lot of changes in our life,
and she's watched me struggle.
Speaker 2 (03:07):
We definitely bonded 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.
Speaker 4 (03:16):
That's so wild, particularly since your mom was living basically
with a medical mystery.
Speaker 5 (03:21):
Of her own. Yeah, exactly, a.
Speaker 4 (03:26):
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 his new parents. Michelle
and her then husband were soaking in all the memories
seeing their child hit another major milestone.
Speaker 1 (03:44):
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 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.
(04:07):
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.
Speaker 5 (04:20):
That's so unusual.
Speaker 1 (04:21):
And I was working at a hospital at the time,
in outpatient rehab, and so I worked with physical therapists
and occupational therapists, and they all panicked and thought, you
know what if I was having a stroke.
Speaker 4 (04:36):
An overall feeling of achiness, numbness, and tangling 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.
Speaker 1 (04:57):
So I made an appointment 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,
(05:22):
and it interestingly, it stopped right at midline. It did
not cross the mid line.
Speaker 4 (05:29):
So a numbness that mimicked partial paralysis, presenting only on
one side of her face. In addition to other symptoms.
Speaker 1 (05:38):
My gums were swollen, and curiously, that side of my
throat was sore, which still to this day. I just
it's such a baffling set of symptoms.
Speaker 4 (05:53):
When you say numbness and soreness in the throat and
numbness on the face. Did it feel like you had
had novacaine?
Speaker 1 (06:01):
It very much felt like I had been to the
dentist 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.
Speaker 5 (06:21):
My gums were very sensitive.
Speaker 4 (06:24):
How long did the first episode last.
Speaker 1 (06:28):
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.
Speaker 4 (06:47):
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 reach on
her life, paging doctor Lund to the nurses station.
Speaker 1 (07:08):
So well, 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
(07:31):
face is numb again, same side, same side, and my
heart just sunk.
Speaker 5 (07:36):
I just thought, no, not now.
Speaker 1 (07:38):
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
(08:00):
and seek treatment immediately. You could be having a stroke.
Speaker 4 (08:04):
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.
Speaker 1 (08:15):
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 going to have to
tell my sisters, Oh, hey, I think something's wrong with me.
I'm going to have to go down to the er.
And of course they didn't. They didn't react, and the
way I was worried they would. Of course they were supportive,
(08:36):
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, ran some blood work. They said,
we can't find anything wrong. You seem fine.
Speaker 4 (08:48):
How did that feel?
Speaker 1 (08:50):
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.
Speaker 4 (09:07):
Even though her sisters 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
(09:29):
time she had a flare up. Michelle then gets referred
to a neurologist to try and reassess her symptoms.
Speaker 1 (09:36):
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
(09:58):
he was trying to trip me up. Her 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.
Speaker 4 (10:17):
What was the implication that it was all in your
head or you were making it up?
Speaker 1 (10:21):
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.
Speaker 4 (10:29):
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.
Speaker 2 (10:52):
She would be like, Oh, my face is going down again.
And it was almost like I would get this sense
of dread because it's like, oh, she's going to be
sick for a few days. Like 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.
Speaker 4 (11:14):
So both girls, for the majority of their lives watched
you struggle with an undiagnosed illness.
Speaker 1 (11:21):
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.
Speaker 5 (11:38):
Just be patient with me.
Speaker 2 (11:40):
She would almost start acting like someone who's coming down
with the flu. You know, she would be laying down,
she'd 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, batten down the hatches a
(12:01):
little bit because mom's gonna need a little extra help.
Speaker 4 (12:06):
When Michelle was hit with another flare up 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.
Speaker 1 (12:19):
It was a very stressful time and 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.
Speaker 5 (12:34):
This was the first time I had met her.
Speaker 1 (12:36):
She didn't really know me, and her take on the
situation was, I think it could be related to herpes. Wow,
that's unexpected. I don't have herpes, she said, Well, more
of the oral herpies tie, the kind of herpies that
causes fever blisters. She said, perhaps you're having outbreaks or
(12:59):
flare up like you would fever blisters. And so she
prescribed me a steroid and herpie's medication, and I felt
so embarrassed. I felt like that was such a strange
take on it. But when a doctor or a nurse
(13:19):
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, and I just thought, I'm not
taking this medicine. But I still kept it in the
(13:40):
back of my mind that what if it is What
if it is related? Because it is flaring up and
during stressful times, So what if that's it.
Speaker 4 (13:52):
Michelle again felt the pain of growing guilt and shame
tied to her flare ups. She now faced an additional
stigma of a Herpe's diagnosis. Feeling misguided, Michelle started shutting down,
even ignoring her prescribed treatment.
Speaker 1 (14:08):
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.
Speaker 4 (14:23):
Though she didn't take the herpes 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.
Speaker 2 (14:35):
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,
where you didn't want to touch or drink after them
or anything like that.
Speaker 1 (14:47):
I remember the first time my daughter called me out
on it 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?
(15:07):
And she was stunned. She had no idea that all
of these years I had worried that I could give
it to her.
Speaker 2 (15:13):
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
or get the germs either.
Speaker 4 (15:25):
By this time, Michelle had been battling her undiagnosed symptoms
for nearly a decade and.
Speaker 1 (15:31):
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 going to have to live with, never imagining that
I really would be living with it for so many years.
Speaker 4 (15:57):
Okay, So as the episodes continue and progress, how do
they change and how does the time period between each
episode alter.
Speaker 1 (16:09):
The time period 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
(16:33):
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.
Speaker 5 (16:44):
Sometimes it would just take a little bit.
Speaker 1 (16:47):
And it sounds crazy, it sounds completely crazy, but that's
that's what I lived with.
Speaker 5 (16:53):
That's how it happened for so many years.
Speaker 4 (16:56):
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 land her in
the hospital where a new doctor was going to take
a closer look at what was going on.
Speaker 1 (17:11):
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 whetnam and I just thought, I'm done
with this. I have got to find out what is
wrong with me.
Speaker 4 (17:29):
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
(17:50):
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. 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 MS. Michelle had given up hope of
(18:11):
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.
Speaker 1 (18:37):
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 colon cancer in two thousand
and seven, and that was such a shock, and for
(19:01):
the next year that's what we focused on, so that
my kids could have a mom.
Speaker 4 (19:06):
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
(19:27):
episodes while you were treating the cancer.
Speaker 1 (19:30):
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.
Speaker 4 (19:48):
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.
Speaker 2 (20:03):
She actually decided to stop the chemotherapy just because it
was just, you know, 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.
(20:24):
And we always try to celebrate that day every year
because it's really really exciting.
Speaker 4 (20:31):
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.
Speaker 1 (20:47):
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
(21:07):
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.
Speaker 4 (21:19):
You must have felt so overwhelmed.
Speaker 5 (21:23):
I did. I did. It was a very difficult time.
Speaker 4 (21:28):
How did it impact your your role as a mother,
and how did it impact the girls.
Speaker 5 (21:36):
I think they just didn't really understand.
Speaker 1 (21:41):
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
(22:01):
could to keep them for worrying about me.
Speaker 2 (22:06):
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 got to 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
(22:28):
waiting for the next episode.
Speaker 4 (22:31):
A few years later, Michelle would go on to remarry,
just as she did with her kids, she hid her
pain from her partner at the beginning, but that didn't
last very long.
Speaker 1 (22:41):
Todd and I got 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 sway and wasn't going to the doctor
(23:02):
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?
Speaker 5 (23:11):
What do you say when they say when did this start?
And you say, oh, nineteen ninety nine.
Speaker 4 (23:16):
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.
Speaker 1 (23:36):
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
whetnam and I had probably about to weeks of not
(24:01):
feeling well with flare ups, and I just thought, I'm done.
Speaker 5 (24:05):
I am so done with this.
Speaker 1 (24:07):
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.
Speaker 4 (24:20):
You finally hit the level of desperation.
Speaker 1 (24:23):
I did, and I told my husband, I said, I'm
ready to find out.
Speaker 5 (24:27):
What this is.
Speaker 4 (24:29):
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.
Speaker 3 (24:46):
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. And when you hear a neurologic disease
that's chronic and progressive, you worry that something major is
(25:06):
going on. And they are having some kind of neurodegenerative
condition common ones, or things like Parkinson's or Alzheimer's disease,
other conditions that eventually can take the person from us.
Speaker 5 (25:20):
So that's always a concern. So I met doctor LaGuardia.
Speaker 1 (25:25):
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.
Speaker 5 (25:41):
He just said, we'll figure this out.
Speaker 1 (25:45):
So he sent me for an MRI, and he did
note that there were three very tiny dots on my brain.
Speaker 4 (25:56):
Why did those three dots stick out you? What were
your thoughts as to what could have caused them or
what they could possibly indicate.
Speaker 3 (26:04):
What they may have been is demyelination, and that's where
the central nervous system, myelin, 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
(26:26):
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 deficiency to
thyroid problems, lupus, rheumatoid arthrisis. It's a bunch of different conditions,
all of which can cause systemic inflammation, and if the
(26:49):
inflammation affects brain arteries, a picture like that can form.
Speaker 1 (26:55):
And he said, do you get migraines? And I said, no,
I don't get migraines. And he said, well, it's possible
that you could be having something called silent migraines. I'd
never heard of this in my life. He said, it's
(27:16):
possible that you could be having migraines, but they're not
causing headaches.
Speaker 5 (27:19):
They're causing your other symptoms.
Speaker 4 (27:25):
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.
Speaker 2 (27:42):
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
got to get off this train.
Speaker 5 (27:50):
I got to figure out what's going on.
Speaker 2 (27:52):
Then she explained everything, and I was just so surprised.
Speaker 4 (27:58):
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?
Speaker 5 (28:05):
Hope.
Speaker 2 (28:07):
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.
Speaker 4 (28:20):
I'd never heard of. Silent migraines. How common are they
and how would you define them?
Speaker 3 (28:27):
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
(28:50):
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 armor laid
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?
Speaker 4 (29:11):
So that's interesting. It's not that silent migraines are so rare.
It's that they're rarely diagnosed.
Speaker 3 (29:19):
I would say a lot of people probably have these
and don't realize it. People you know 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
numb or tingling, and they'll think, oh, I slept on
it wrong. But when it happens again and again, and
(29:40):
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.
Speaker 4 (29:55):
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.
Speaker 1 (30:07):
And the weeks were going by and I was not
having any flare ups, 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
(30:29):
and I've had nothing. And even doctor Laguardi I 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.
Speaker 4 (30:49):
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?
Speaker 2 (30:59):
She 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.
Speaker 1 (31:18):
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.
Speaker 4 (31:39):
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.
Speaker 1 (31:55):
I really couldn't find a whole lot of information online
about it. I looked Facebook, 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.
Speaker 4 (32:16):
Who knows. Maybe someone's listening right now, and yes, maybe
you'll find your silent migraine twin.
Speaker 1 (32:22):
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.
Speaker 4 (32:35):
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.
Speaker 3 (32:48):
Can use 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.
(33:09):
And whether you use doctor Google or 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
(33:31):
made quite a bit better.
Speaker 4 (33:33):
What do you want people to take away from your story.
Speaker 1 (33:37):
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's still impacted me in many ways, and I want
(33:59):
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 why you are suffering.
My name is Michelle, and for twenty three years, I
suffered with a mysterious illness that was finally diagnosed as
(34:23):
silent migraines.
Speaker 4 (34:36):
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.
(35:00):
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.
Speaker 6 (35:13):
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 of high steroids just to try to get the
heart to recover.
Speaker 4 (35:28):
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 bry Pacheco. Executive producers
are Matt Romano and myself. Our EP of post production
(35:49):
is James Foster. Our producers are Sierra Kaiser and John Irwin.
And this episode was researched by Diana Davis
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. That's so unusual.
Speaker 2 (00:14):
I definitely was very cautious, you know, and cautious making
sure my sister didn't drink after her or get the
germs either.
Speaker 3 (00:21):
She had had several years of symptoms that were slowly progressing.
And when we hear that, you know, that's worrisome.
Speaker 1 (00:30):
It's such a baffling set of symptoms. We felt like
perhaps he thought that I was just making this up,
but the episodes just kept coming.
Speaker 4 (00:48):
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.
(01:12):
These are their stories and Lauren Bret Pacheco and this
is symptomatic. When you talk with Michelle L. Frank, the
(01:38):
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.
Speaker 5 (01:54):
I'm all about the coffee. Me too.
Speaker 4 (01:57):
I like to say the color is dark, but the
power is clear.
Speaker 1 (02:00):
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.
Speaker 5 (02:13):
I'm a volunteer for Find a Grave.
Speaker 1 (02:15):
I love cemeteries and so I help families find their
loved ones cemetery stones.
Speaker 5 (02:21):
So that's something fun I do.
Speaker 4 (02:23):
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.
Speaker 2 (02:32):
I think she's somebody who has a lot of interest
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.
Speaker 4 (02:45):
That's her eldest daughter, Meghan. Meghan is currently attending law
school in New York City, but even at a distance,
Meghan and Michelle maintain a strong bond as mother and daughter.
Speaker 1 (02:56):
Meghan and I are very close. We can pretty much
just say anything or share anything.
Speaker 5 (03:03):
You know.
Speaker 1 (03:03):
We've been through a lot of changes in our life,
and she's watched me struggle.
Speaker 2 (03:07):
We definitely bonded 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.
Speaker 4 (03:16):
That's so wild, particularly since your mom was living basically
with a medical mystery.
Speaker 5 (03:21):
Of her own. Yeah, exactly, a.
Speaker 4 (03:26):
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 his new parents. Michelle
and her then husband were soaking in all the memories
seeing their child hit another major milestone.
Speaker 1 (03:44):
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 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.
(04:07):
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.
Speaker 5 (04:20):
That's so unusual.
Speaker 1 (04:21):
And I was working at a hospital at the time,
in outpatient rehab, and so I worked with physical therapists
and occupational therapists, and they all panicked and thought, you
know what if I was having a stroke.
Speaker 4 (04:36):
An overall feeling of achiness, numbness, and tangling 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.
Speaker 1 (04:57):
So I made an appointment 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,
(05:22):
and it interestingly, it stopped right at midline. It did
not cross the mid line.
Speaker 4 (05:29):
So a numbness that mimicked partial paralysis, presenting only on
one side of her face. In addition to other symptoms.
Speaker 1 (05:38):
My gums were swollen, and curiously, that side of my
throat was sore, which still to this day. I just
it's such a baffling set of symptoms.
Speaker 4 (05:53):
When you say numbness and soreness in the throat and
numbness on the face. Did it feel like you had
had novacaine?
Speaker 1 (06:01):
It very much felt like I had been to the
dentist 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.
Speaker 5 (06:21):
My gums were very sensitive.
Speaker 4 (06:24):
How long did the first episode last.
Speaker 1 (06:28):
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.
Speaker 4 (06:47):
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 reach on
her life, paging doctor Lund to the nurses station.
Speaker 1 (07:08):
So well, 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
(07:31):
face is numb again, same side, same side, and my
heart just sunk.
Speaker 5 (07:36):
I just thought, no, not now.
Speaker 1 (07:38):
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
(08:00):
and seek treatment immediately. You could be having a stroke.
Speaker 4 (08:04):
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.
Speaker 1 (08:15):
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 going to have to
tell my sisters, Oh, hey, I think something's wrong with me.
I'm going to have to go down to the er.
And of course they didn't. They didn't react, and the
way I was worried they would. Of course they were supportive,
(08:36):
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, ran some blood work. They said,
we can't find anything wrong. You seem fine.
Speaker 4 (08:48):
How did that feel?
Speaker 1 (08:50):
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.
Speaker 4 (09:07):
Even though her sisters 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
(09:29):
time she had a flare up. Michelle then gets referred
to a neurologist to try and reassess her symptoms.
Speaker 1 (09:36):
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
(09:58):
he was trying to trip me up. Her 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.
Speaker 4 (10:17):
What was the implication that it was all in your
head or you were making it up?
Speaker 1 (10:21):
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.
Speaker 4 (10:29):
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.
Speaker 2 (10:52):
She would be like, Oh, my face is going down again.
And it was almost like I would get this sense
of dread because it's like, oh, she's going to be
sick for a few days. Like 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.
Speaker 4 (11:14):
So both girls, for the majority of their lives watched
you struggle with an undiagnosed illness.
Speaker 1 (11:21):
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.
Speaker 5 (11:38):
Just be patient with me.
Speaker 2 (11:40):
She would almost start acting like someone who's coming down
with the flu. You know, she would be laying down,
she'd 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, batten down the hatches a
(12:01):
little bit because mom's gonna need a little extra help.
Speaker 4 (12:06):
When Michelle was hit with another flare up 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.
Speaker 1 (12:19):
It was a very stressful time and 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.
Speaker 5 (12:34):
This was the first time I had met her.
Speaker 1 (12:36):
She didn't really know me, and her take on the
situation was, I think it could be related to herpes. Wow,
that's unexpected. I don't have herpes, she said, Well, more
of the oral herpies tie, the kind of herpies that
causes fever blisters. She said, perhaps you're having outbreaks or
(12:59):
flare up like you would fever blisters. And so she
prescribed me a steroid and herpie's medication, and I felt
so embarrassed. I felt like that was such a strange
take on it. But when a doctor or a nurse
(13:19):
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, and I just thought, I'm not
taking this medicine. But I still kept it in the
(13:40):
back of my mind that what if it is What
if it is related? Because it is flaring up and
during stressful times, So what if that's it.
Speaker 4 (13:52):
Michelle again felt the pain of growing guilt and shame
tied to her flare ups. She now faced an additional
stigma of a Herpe's diagnosis. Feeling misguided, Michelle started shutting down,
even ignoring her prescribed treatment.
Speaker 1 (14:08):
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.
Speaker 4 (14:23):
Though she didn't take the herpes 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.
Speaker 2 (14:35):
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,
where you didn't want to touch or drink after them
or anything like that.
Speaker 1 (14:47):
I remember the first time my daughter called me out
on it 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?
(15:07):
And she was stunned. She had no idea that all
of these years I had worried that I could give
it to her.
Speaker 2 (15:13):
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
or get the germs either.
Speaker 4 (15:25):
By this time, Michelle had been battling her undiagnosed symptoms
for nearly a decade and.
Speaker 1 (15:31):
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 going to have to live with, never imagining that
I really would be living with it for so many years.
Speaker 4 (15:57):
Okay, So as the episodes continue and progress, how do
they change and how does the time period between each
episode alter.
Speaker 1 (16:09):
The time period 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
(16:33):
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.
Speaker 5 (16:44):
Sometimes it would just take a little bit.
Speaker 1 (16:47):
And it sounds crazy, it sounds completely crazy, but that's
that's what I lived with.
Speaker 5 (16:53):
That's how it happened for so many years.
Speaker 4 (16:56):
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 land her in
the hospital where a new doctor was going to take
a closer look at what was going on.
Speaker 1 (17:11):
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 whetnam and I just thought, I'm done
with this. I have got to find out what is
wrong with me.
Speaker 4 (17:29):
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
(17:50):
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. 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 MS. Michelle had given up hope of
(18:11):
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.
Speaker 1 (18:37):
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 colon cancer in two thousand
and seven, and that was such a shock, and for
(19:01):
the next year that's what we focused on, so that
my kids could have a mom.
Speaker 4 (19:06):
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
(19:27):
episodes while you were treating the cancer.
Speaker 1 (19:30):
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.
Speaker 4 (19:48):
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.
Speaker 2 (20:03):
She actually decided to stop the chemotherapy just because it
was just, you know, 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.
(20:24):
And we always try to celebrate that day every year
because it's really really exciting.
Speaker 4 (20:31):
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.
Speaker 1 (20:47):
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
(21:07):
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.
Speaker 4 (21:19):
You must have felt so overwhelmed.
Speaker 5 (21:23):
I did. I did. It was a very difficult time.
Speaker 4 (21:28):
How did it impact your your role as a mother,
and how did it impact the girls.
Speaker 5 (21:36):
I think they just didn't really understand.
Speaker 1 (21:41):
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
(22:01):
could to keep them for worrying about me.
Speaker 2 (22:06):
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 got to 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
(22:28):
waiting for the next episode.
Speaker 4 (22:31):
A few years later, Michelle would go on to remarry,
just as she did with her kids, she hid her
pain from her partner at the beginning, but that didn't
last very long.
Speaker 1 (22:41):
Todd and I got 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 sway and wasn't going to the doctor
(23:02):
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?
Speaker 5 (23:11):
What do you say when they say when did this start?
And you say, oh, nineteen ninety nine.
Speaker 4 (23:16):
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.
Speaker 1 (23:36):
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
whetnam and I had probably about to weeks of not
(24:01):
feeling well with flare ups, and I just thought, I'm done.
Speaker 5 (24:05):
I am so done with this.
Speaker 1 (24:07):
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.
Speaker 4 (24:20):
You finally hit the level of desperation.
Speaker 1 (24:23):
I did, and I told my husband, I said, I'm
ready to find out.
Speaker 5 (24:27):
What this is.
Speaker 4 (24:29):
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.
Speaker 3 (24:46):
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. And when you hear a neurologic disease
that's chronic and progressive, you worry that something major is
(25:06):
going on. And they are having some kind of neurodegenerative
condition common ones, or things like Parkinson's or Alzheimer's disease,
other conditions that eventually can take the person from us.
Speaker 5 (25:20):
So that's always a concern. So I met doctor LaGuardia.
Speaker 1 (25:25):
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.
Speaker 5 (25:41):
He just said, we'll figure this out.
Speaker 1 (25:45):
So he sent me for an MRI, and he did
note that there were three very tiny dots on my brain.
Speaker 4 (25:56):
Why did those three dots stick out you? What were
your thoughts as to what could have caused them or
what they could possibly indicate.
Speaker 3 (26:04):
What they may have been is demyelination, and that's where
the central nervous system, myelin, 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
(26:26):
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 deficiency to
thyroid problems, lupus, rheumatoid arthrisis. It's a bunch of different conditions,
all of which can cause systemic inflammation, and if the
(26:49):
inflammation affects brain arteries, a picture like that can form.
Speaker 1 (26:55):
And he said, do you get migraines? And I said, no,
I don't get migraines. And he said, well, it's possible
that you could be having something called silent migraines. I'd
never heard of this in my life. He said, it's
(27:16):
possible that you could be having migraines, but they're not
causing headaches.
Speaker 5 (27:19):
They're causing your other symptoms.
Speaker 4 (27:25):
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.
Speaker 2 (27:42):
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
got to get off this train.
Speaker 5 (27:50):
I got to figure out what's going on.
Speaker 2 (27:52):
Then she explained everything, and I was just so surprised.
Speaker 4 (27:58):
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?
Speaker 5 (28:05):
Hope.
Speaker 2 (28:07):
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.
Speaker 4 (28:20):
I'd never heard of. Silent migraines. How common are they
and how would you define them?
Speaker 3 (28:27):
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
(28:50):
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 armor laid
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?
Speaker 4 (29:11):
So that's interesting. It's not that silent migraines are so rare.
It's that they're rarely diagnosed.
Speaker 3 (29:19):
I would say a lot of people probably have these
and don't realize it. People you know 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
numb or tingling, and they'll think, oh, I slept on
it wrong. But when it happens again and again, and
(29:40):
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.
Speaker 4 (29:55):
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.
Speaker 1 (30:07):
And the weeks were going by and I was not
having any flare ups, 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
(30:29):
and I've had nothing. And even doctor Laguardi I 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.
Speaker 4 (30:49):
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?
Speaker 2 (30:59):
She 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.
Speaker 1 (31:18):
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.
Speaker 4 (31:39):
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.
Speaker 1 (31:55):
I really couldn't find a whole lot of information online
about it. I looked Facebook, 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.
Speaker 4 (32:16):
Who knows. Maybe someone's listening right now, and yes, maybe
you'll find your silent migraine twin.
Speaker 1 (32:22):
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.
Speaker 4 (32:35):
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.
Speaker 3 (32:48):
Can use 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.
(33:09):
And whether you use doctor Google or 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
(33:31):
made quite a bit better.
Speaker 4 (33:33):
What do you want people to take away from your story.
Speaker 1 (33:37):
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's still impacted me in many ways, and I want
(33:59):
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 why you are suffering.
My name is Michelle, and for twenty three years, I
suffered with a mysterious illness that was finally diagnosed as
(34:23):
silent migraines.
Speaker 4 (34:36):
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.
(35:00):
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.
Speaker 6 (35:13):
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 of high steroids just to try to get the
heart to recover.
Speaker 4 (35:28):
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 bry Pacheco. Executive producers
are Matt Romano and myself. Our EP of post production
(35:49):
is James Foster. Our producers are Sierra Kaiser and John Irwin.
And this episode was researched by Diana Davis
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