0:01

Hey, it's Lauren Bright Pacheco. In

0:03

addition to true crime, health and

0:05

wellness have long been intense interests

0:08

of mine, and I've been working on a podcast that

0:10

actually combines all three. Symptomatic,

0:13

a medical mystery podcast, tackles incredible

0:16

cases of health challenges that have

0:19

stumped patients and their

0:21

doctors for years, sometimes

0:23

even decades. At times,

0:26

terrifying and ultimately

0:28

really inspiring. Symptomatic

0:31

offers amazing insight into real

0:33

life health issues that could actually

0:35

impact your life too. We're

0:37

currently launching our second season, and I

0:40

am so excited to share our first episode

0:42

with you. I hope you find it as engaging

0:45

and compelling as I do. And

0:47

I will be back very, very soon

0:49

with another true crime investigation.

0:55

Towards the end of the day, I thought, well, I

0:58

think I know what doesn't feel right. My scalp is

1:00

tingly and my face feels

1:02

numb. That's so unusual.

1:05

I definitely was very cautious, you know, and

1:07

cautious making sure my sister didn't drink

1:10

after her, get the germs either.

1:12

She had had several years of

1:14

symptoms that were slowly progressing.

1:18

And when we hear that, you

1:20

know, that's worrisome. It's such a

1:23

baffling set of symptoms. We

1:26

felt like perhaps he thought that I was just

1:29

making this up, but the

1:31

episodes just kept coming. How

1:39

terrifying would it be to fight

1:42

an unknown enemy, one you didn't

1:44

recognize and didn't see coming? What

1:47

if that enemy was coming from within

1:49

a disease that even doctors

1:52

couldn't identify?

1:53

Nearly half of

1:55

all Americans suffer from some

1:58

chronic illness and many. struggle

2:00

for an accurate diagnosis. These

2:04

are their stories. I'm

2:08

Lauren Breitcheco and this is

2:10

symptomatic.

2:27

When you talk with Michelle L. Frank, the

2:30

first thing you notice is her warm personality

2:32

and natural curiosity. You

2:35

can actually hear the smile she carries

2:37

around with her basically all the time. As

2:39

the mother of three daughters, Michelle attributes

2:42

her positivity to just one thing.

2:45

Coffee? I'm all about

2:47

the coffee. Me too. I like to

2:49

say the color's dark but the power is clear.

2:51

Yes, my husband sometimes says, can

2:53

we go just 30 minutes without talking

2:56

about coffee?

2:56

But

3:00

I have a lot of hobbies and different interests

3:02

and I love jigsaw puzzles. I'm

3:05

a volunteer for find a grave. I love cemeteries

3:08

and so I help families find their

3:10

loved ones cemetery stones. So

3:13

that's something fun I do. Michelle

3:15

is very much a family-oriented person.

3:18

Her pride and joy being her two daughters who

3:20

are off at school, her stepdaughter and

3:22

three step-grandson.

3:23

I think she's somebody

3:25

who has a lot of interest

3:27

and a lot of hobbies. She loves learning

3:30

and sharing what she's

3:32

learned with other people. I think she's someone

3:34

who just loves knowledge. That's

3:37

her eldest daughter, Megan. Megan

3:39

is currently attending law school in New York City

3:42

but even at a distance, Megan and Michelle

3:44

maintain

3:44

a strong bond as mother and

3:47

daughter.

3:47

Megan and I are very close. We

3:50

can pretty much just say anything

3:52

or share anything. We've

3:55

been through a lot of changes in our life and she's watched

3:57

me struggle.

3:58

We definitely bonded. a lot, watching

4:01

medical TV shows. I don't know if she

4:03

mentioned to you that she loved the show Mystery

4:05

Diagnosis, and we would always watch that together.

4:07

That's so wild, particularly since your mom

4:10

was living basically with a medical

4:12

mystery of her own. Yeah, exactly.

4:17

A medical mystery that would plague Michelle

4:20

for over 20

4:20

years. Michelle's

4:22

symptoms started just after her

4:24

eldest daughter's first birthday. It

4:27

was the late 90s, and as new parents, Michelle

4:29

and her then-husband were soaking in all

4:31

the memories, seeing their child hit another

4:34

major milestone.

4:35

We had a big party for her,

4:38

and life was really good. We had settled into

4:40

a routine. I was a working mom,

4:43

but we spent every minute we could with

4:45

her when we weren't working, and life was

4:48

really, really good. And

4:50

then just probably a couple of weeks after

4:52

her first birthday, I was

4:54

at work one day, and something felt off, but I couldn't

4:57

quite tell what it was. Something

4:59

just didn't feel right.

5:03

Towards the end of the day, I thought, well, I

5:06

think I know what doesn't feel right. My scalp is

5:08

tingly, and my face feels

5:10

numb. And I thought, that's so

5:12

unusual. And I was working at a hospital

5:14

at the time in outpatient rehab, and so

5:17

I worked with physical therapists and occupational therapists,

5:19

and they all panicked

5:22

and thought, what if I was having

5:24

a stroke?

5:27

An overall feeling of achiness, numbness,

5:30

and tingling in her scalp and face, the

5:33

initial signs were pointing to a potentially

5:35

severe issue bubbling under

5:38

the surface. But she waited until

5:40

the next day to go to her general practitioner,

5:43

trying not to overplay the situation.

5:49

So I made an appointment

5:51

for the next morning to see my doctor, and

5:54

he was just perplexed. He didn't really know what

5:56

it was. He ruled out Bell's

5:58

policy because, I

6:00

didn't have the drooping. My face didn't droop.

6:04

It was more of a sensory issue,

6:06

not a motor issue. My

6:09

scalp tingled. My eyelid felt

6:11

heavy. My face was

6:13

numb. And interestingly, it

6:15

stopped right at midline. It did not cross

6:18

the midline.

6:20

So a numbness that mimicked partial

6:23

paralysis, presenting only

6:25

on one side of her face in addition

6:27

to other symptoms.

6:29

My gums were swollen. And

6:32

curiously, that side of my

6:35

throat was sore,

6:36

which

6:38

still to this day, I just, it's

6:40

such a baffling set

6:42

of symptoms.

6:44

When you say numbness and

6:47

soreness in the throat and numbness

6:49

on the face, did it feel like you

6:51

had had Novocaine? It

6:53

very much felt like I had been to the dentist

6:56

and it was wearing off. Very

6:58

much so. And as

7:00

the episode would fade

7:02

over the next couple of days, the swelling would

7:05

go down in my gums and they would feel kind

7:08

of raw. Almost again,

7:10

almost like I had been to the dentist and received

7:12

a shot or something. My gums were very sensitive.

7:15

How long did the first episode last?

7:18

It

7:20

lasted about two or three days. And

7:23

my doctor could not figure

7:26

out what it was. He said,

7:28

it could just be a fluke.

7:31

If it happens again, call us immediately.

7:35

And he sent me on my way.

7:39

Michelle returned to normal life for a few weeks.

7:41

The doctors had ruled out a stroke in Bell's Palsy,

7:44

but still didn't have any real answers. This

7:47

was just the beginning of the havoc

7:49

her unknown condition would wreak on

7:52

her life.

7:59

So probably about a month later,

8:02

my mom was having

8:04

surgery. We were all very close

8:07

to my mom and it was a very

8:10

stressful time. We were all sitting in the hospital

8:12

waiting for the surgery start and waiting

8:14

for an update. And I was just so

8:16

worried. And

8:19

as we're sitting there waiting, I realized, oh

8:22

no, my face is numb again.

8:24

Same side?

8:25

Same side. And my heart just sunk.

8:28

I just thought, no, not now. The

8:30

focus is supposed to be on my mom today.

8:33

This day is not about me. And I was just

8:37

devastated. So

8:39

I did what they told me to do. I

8:42

called my doctor's office and said,

8:45

I'm at the hospital with my mom and my face is numb

8:47

again. And they said, you

8:49

need to go down to the ER and

8:52

seek treatment immediately. You

8:54

could be having a stroke. We don't know. What's

8:58

going through your head at that moment

9:00

that must have been such a conflict between wanting

9:03

to be there for your mother and having to deal with that

9:05

kind of crisis? It

9:07

felt horrible because I didn't want

9:09

the attention to be on me. This day

9:11

was not about me. And I felt embarrassed

9:14

that I was going to have to tell my sisters,

9:17

oh, hey, I think something's wrong with me. I'm

9:19

going to have to go down to the ER. And of

9:21

course, they didn't. They

9:24

didn't react the way I was worried. They would.

9:26

Of course, they were supportive and they said, get

9:28

down there now. And they waited

9:30

on my mom and I went downstairs to the

9:32

ER. They ran a CAT scan, ran

9:35

some blood work. They said, we can't find anything

9:37

wrong. You seem fine.

9:39

How did that feel?

9:42

I felt really dumb. Like

9:44

I had caused all this drama. You

9:48

know, we were trying not to let my mom know she

9:51

was out of surgery by this time. And I'm like,

9:53

don't tell mom. You're

9:55

never too old to say don't tell mom.

9:59

After the doctors reacted with support, Michelle

10:02

was starting to internalize the shame and guilt

10:04

from navigating her uncontrollable, unexplainable

10:07

symptoms, which remained invisible

10:10

to those around her. As

10:12

the months go on, the symptoms started

10:14

to get worse. In addition to the numbness

10:16

in her face and overall body aches, her

10:18

vision was starting to be affected every time

10:21

she had a flare-up. Michelle then

10:23

gets referred to a neurologist to try

10:25

and reassess her symptoms.

10:27

So I did go to a neurologist. He

10:30

sent me for an MRI. We

10:32

went for the follow-up. He said the MRI was

10:34

fine. He couldn't find anything

10:37

wrong with me because he had thought

10:39

maybe I had multiple sclerosis, and

10:42

that was the thing they were trying to rule out. He

10:44

said, we don't know what this is. He

10:47

asked so many questions, and I felt

10:49

like he was trying to trip me up.

10:52

My husband was confused

10:54

too, and he just kept asking

10:56

questions over and over again about what

10:59

side it was and, well, if it was this side

11:01

or how did I know that I

11:03

was having a flare-up if I wasn't touching my face.

11:06

It was a very frustrating visit.

11:08

What was the implication that it was

11:11

all in your head or you were making

11:12

it up? Yes. We felt like perhaps

11:14

he thought that I was just either making this

11:17

up or I wasn't accurately portraying

11:19

what my symptoms were.

11:21

Mom was starting to feel both frustrated

11:23

and scared. No one seemed to have the

11:25

answers. Some people didn't even seem to believe

11:28

what she was saying was true. She

11:30

started second-guessing herself. Was

11:32

she making too big a deal out of this? Were

11:34

the symptoms real?

11:36

They were very real,

11:38

so real that her daughter, Megan, has distinct

11:41

memories of her flare-ups all

11:42

throughout her childhood.

11:44

She would be like, oh, my face

11:46

is going numb again, and it

11:48

was almost like I would get this sense of

11:50

dread, sort of, because it's like, oh,

11:53

she's going to be sick for a few days.

11:56

And also just, like,

11:59

frustration.

11:59

that

12:00

we just didn't know what it was, you know what I mean? And

12:03

we didn't know the best way to

12:04

treat it or anything. So

12:06

both girls for the majority of their

12:08

lives watched you struggle with

12:11

an undiagnosed illness. Yes, they

12:13

did. They didn't really understand it. I

12:16

kept it quiet most of the time, but

12:19

they knew when I was having a flare-up,

12:22

sometimes I would make a passing comment

12:24

of, oh, my face

12:27

is hurting today, or I'm having a flare-up.

12:29

Just be patient with me.

12:31

She would almost start acting like

12:34

someone who's coming down with the flu. You know, she

12:36

would be laying down. She would be drinking a lot

12:38

of electrolytes. She would be in the

12:40

dark trying to minimize

12:42

her sensitivity

12:45

to light. You would notice that

12:47

she was lethargic and be like, oh,

12:49

well, she's going to be sick for a few days. So,

12:51

you know, batten down the hatches a little bit, because

12:55

mom's going to need a little extra help.

12:56

When

12:58

Michelle was hit with another flare-up

13:00

a few months after visiting the neurologist, she

13:02

was seen by a nurse practitioner

13:05

who had a confident new idea

13:07

of what it could be.

13:10

It was a very stressful time. In

13:13

my family's life, my husband was starting

13:15

a new business. And looking

13:17

back, I can remember how stressful that was. So

13:20

I had another flare-up, went to the

13:22

doctor, and there was a nurse practitioner

13:25

there. This was the first time I had

13:27

met her. She didn't really know me. And

13:30

her take on the situation was,

13:33

I think it could be related to herpes.

13:36

Wow,

13:37

that's unexpected. I don't

13:39

have herpes. She said, well, more

13:42

of the oral herpes type,

13:44

the kind of herpes that causes fever blisters.

13:47

She said, perhaps you're having

13:50

outbreaks or flare-ups like you would

13:52

fever blisters. And

13:55

so she prescribed me a

13:57

steroid and herpes

13:59

medication. medication. And

14:02

I felt so

14:04

embarrassed.

14:05

I felt like that was such a strange

14:08

take on it.

14:09

But when a doctor or a nurse tells you something,

14:12

you know, you keep that in the back of your mind as

14:14

a possibility. And I can remember

14:16

going to the pharmacy and there was a

14:18

young girl there, the pharmacy

14:20

tech, and she looked

14:23

at the medication on the label and

14:25

then she looked at me and kind of snickered. And I

14:28

just thought, I'm not taking

14:30

this medicine. But I still kept it in

14:32

the back of my mind that what

14:35

if it is? What if it is related? Because

14:37

it is slaring up enduring stressful times.

14:40

So what if that's it?

14:43

Michelle again felt the pain

14:46

of growing guilt and shame tied to her flare

14:48

ups. She now faced an additional

14:51

stigma of a herpes diagnosis. Feeling

14:53

misguided, Michelle started shutting

14:55

down, even ignoring

14:57

her prescribed treatment.

15:00

I pretty much kept it all inside because it

15:02

was embarrassing. I've never met

15:04

anyone that had this. So I didn't

15:07

really want to talk about it because it just felt like

15:09

something weird. I didn't

15:12

really have anyone to share it with. Though

15:15

she didn't take the herpes medicine, the

15:17

idea that a virus could be the underlying

15:20

cause always lingered in the back of her mind.

15:23

She started to worry about infecting her

15:25

kids.

15:26

She would basically act like she was contagious

15:29

because we thought it was a virus. So it would be

15:31

like treat her as you would treat

15:33

someone with the flu or you didn't want to touch

15:35

or drink after them or

15:37

anything like that. I remember

15:39

the first time

15:41

my daughter called me out on and said, why?

15:43

Why will you not let me drink after

15:45

you today? And I said,

15:48

well, I'm concerned

15:51

that this problem

15:53

I have with my face could be contagious. What

15:55

if it's contagious? What if it's viral in nature

15:57

and I don't want you to get it? And she was stunned.

16:00

and she had no idea that all

16:02

of these years I had worried that I could give it

16:04

to her.

16:05

I was always really nervous that I was gonna get it too.

16:08

So I definitely was very cautious,

16:10

you know, and cautious making sure my sister didn't

16:13

drink after her, get the germs

16:15

either.

16:17

By this time, Michelle had been battling

16:19

her undiagnosed symptoms for nearly

16:21

a decade.

16:22

And at that point I was done. I

16:25

was completely done. I'm not seeking

16:27

treatment for this and this sounds really crass,

16:30

but I thought it hasn't killed me. It

16:32

hasn't killed me yet. Maybe it's

16:35

nothing. Maybe it's just something that I'm gonna

16:37

have to live with. Never imagining

16:39

that I really would be living with

16:42

it for so many years.

16:48

Okay, so as the episodes

16:51

continue and progress, how

16:54

do they change and how does the

16:56

time period between each

16:58

episode

16:59

alter?

17:00

The time period between episodes

17:02

would vary. Sometimes I could go three

17:05

months without an episode and I would consider that

17:08

pretty lucky. Sometimes I would

17:10

get them once a month just randomly.

17:13

And the episodes could be mild

17:16

to moderate or they could be pretty severe

17:19

in nature. There were times when

17:22

it was a struggle

17:24

just to get out of bed because I felt

17:26

so sick because they would

17:29

give me the feeling of having the flu. Sometimes

17:32

I would get a headache, but it wasn't

17:34

a debilitating headache. Sometimes it would just

17:36

take a little bit. And

17:39

it sounds crazy. It sounds completely crazy.

17:43

But that's what I lived with. That's how

17:45

it happened for so many years. Michelle

17:48

just learned to live with it, juggling

17:50

her symptoms alongside with work and caring

17:52

for her young family. But soon, back

17:55

to back flare ups with Lander in the hospital

17:58

where a new doctor was going to take. closer

18:00

look at what was going on. I

18:03

had an episode with my right side of my face and

18:06

then just as soon as that started

18:08

to clear up my left side went numb and I

18:11

just thought I'm done with this. I have got

18:13

to find out what is wrong with me.

18:20

We'll be right back with Symptomatic, a

18:23

medical mystery podcast.

18:26

What are real people with psoriatic arthritis

18:28

saying about Cosentix? I had to

18:30

do something. I started Cosentix.

18:33

I moved better because of Cosentix. Cosentix

18:36

Necukinumab is for adults with active psoriatic

18:38

arthritis and is given as a 150 milligram

18:40

dose. Don't use if you're allergic to Cosentix.

18:43

Before starting get checked for TB. Serious

18:45

allergic reactions, severe skin reactions that

18:47

look like eczema and an increased risk of infections,

18:49

some fatal have occurred. Cosentix may lower

18:52

ability to fight infections. So tell your doctor

18:54

if you have an infection or symptoms like fevers,

18:56

sweats, chills, muscle aches or cough.

18:58

How to vaccine your plan to or if IBD

19:00

symptoms develop or worsen. Learn more at cosentix.com

19:03

or 1-844-Cosentix. Don't wait.

19:06

Ask your doctor about Cosentix.

19:14

Now back to Symptomatic, a

19:16

medical mystery podcast.

19:21

Michelle Elfrink was living with

19:23

a mysterious unknown condition that

19:26

continually

19:26

flared up at the worst moments in

19:28

the most stressful times, making it

19:31

hard for her to even get out of bed on some days.

19:34

Numbness, overall body aches, impacted

19:36

vision. Every time a doctor thought

19:38

they had an idea of what this could be, they

19:41

were stumped. It wasn't a stroke,

19:43

Bell's palsy or MS. Michelle

19:46

had given up hope of finding any

19:48

answer and instead just learned to live

19:51

with this life-changing condition. And

19:53

yet in the middle of her uncontrolled flare-ups,

19:56

she was given a different and

19:58

even more dire diagnosis.

19:59

diagnosis. Just a few years

20:02

after her second daughter was born.

20:14

My daughter Emily, she had some special needs

20:16

and that was a very stressful

20:19

three years. We were stressed

20:21

to the max and just

20:24

as she started to get through some of

20:26

her issues, I was hit

20:28

with another blow. I found out I had stage

20:30

three colon cancer in 2007 and that

20:32

was such a shock. And

20:37

for the next year, that's what we focused on

20:41

so that my kids could have a mom.

20:43

I can't imagine the amount of stress

20:45

you were under dealing with cancer,

20:48

with raising a family,

20:50

with having a career and

20:53

this unknown

20:56

disease plaguing you

20:58

on top of it. Did the

21:00

stress of that time period bring

21:03

on more episodes while you were treating

21:06

the cancer?

21:07

Yes, and I had figured out

21:09

that if I didn't manage my stress,

21:12

that the episodes would be more

21:14

frequent and they would be more severe. If

21:17

I would have an acute episode of something very

21:19

stressful, then I could pretty

21:21

much expect to wake up the next day with my face

21:24

numb.

21:25

Michelle was now battling not just

21:27

for peace

21:27

and comfort but for her life. Her

21:30

colon cancer was trying to spread to the rest

21:32

of

21:32

her body through her lymph nodes. She

21:35

would undergo multiple rounds of chemotherapy

21:37

in hopes of defeating it.

21:39

She actually decided to

21:41

stop the chemotherapy just because it

21:44

was just too much. So after

21:46

her last episode of chemotherapy, she was like, she would undergo

21:48

multiple rounds of chemotherapy in hopes

21:51

of defeating it. She actually

21:54

decided to stop the chemotherapy

21:56

just because it was just too much.

22:00

round she was like we're not gonna do any more chemo

22:02

and we're just gonna see what happens

22:05

so we waited a really long time and then

22:07

when she had her next scan I believe

22:10

and her next colonoscopy that was when we found

22:12

out like oh she's cancer free and

22:15

we always try to celebrate that day

22:17

every year because it's really really

22:19

exciting.

22:21

Finally a win. Getting

22:23

through chemo and beating back cancer so

22:25

she could be there for her family. Ever

22:27

selfless and genuine Michelle never wanted

22:29

to feel like a burden to any of them even

22:32

as her flare-ups continued to intensify

22:34

and shift.

22:36

I did notice as the years went

22:38

by that they were happening more frequently.

22:41

I think my stress was

22:43

just so enormous that I was having

22:45

a hard time staying on top of it. I

22:48

had some mental health issues. My

22:50

depression was pretty

22:52

significant. In 2012 my husband

22:54

and I got divorced.

22:59

That was a very stressful

23:01

year and the episodes

23:03

just kept coming to the point

23:05

where they were happening every four to six weeks

23:07

for a while. You must

23:09

have felt so overwhelmed. I

23:12

did. I did. It was

23:15

a very difficult time.

23:17

How did it impact your

23:19

your

23:21

role as a mother and how did

23:23

it impact the girls? I

23:26

think they just didn't

23:27

really understand exactly

23:31

what I was going through because I'm pretty good at hiding

23:33

things from them. I

23:35

didn't want them to know. I wanted to focus

23:38

on them and they were growing up and

23:41

moving on with their lives and ever since

23:43

I had cancer

23:45

the fears and worries that they had

23:47

about me were so great that

23:50

I did everything I could to keep them from

23:52

worrying about me.

23:55

I would say it

23:56

started getting worse when I was a teenager

23:59

and That's like a time when you're really busy

24:01

anyways, and any kind of disruption

24:04

is just like, oh no, we gotta

24:06

work around this. And I was just

24:08

really worried for her because

24:11

I could see it was frustrating

24:13

her and affecting her emotionally.

24:15

It was just draining, because she was always on edge waiting

24:18

for the next episode.

24:20

A few years later, Michelle would go

24:23

on to remarry, just as she did

24:25

with her kids. She hid her pain from

24:27

her partner at the beginning, but that

24:29

didn't last very long.

24:31

Todd and I got married in 2015, and

24:34

he is just the most amazing

24:36

man you could ever imagine. After

24:38

we got married and we were living together

24:41

and he was seeing me experience these episodes,

24:43

he was horrified. He

24:45

just could not believe that

24:48

I was suffering in this way and wasn't

24:50

going to the doctor about it. And I

24:53

would always fire back and say, how

24:55

do you go to the doctor for something that you've had

24:57

for 23 years?

24:59

That seems weird. What

25:01

do you say when they say, when did this start?

25:03

And you say, oh, 1999.

25:06

Even with Todd now by her side pushing

25:08

her to find answers, the growing intensity

25:10

of her flare-ups would soon become something

25:13

she couldn't just live with or

25:15

ignore. All right, so

25:18

tell me about the turning point. When

25:21

do you finally decide you've had enough and you're

25:23

going to go to the doctor again?

25:26

In June of 2022, I had two back-to-back episodes. I

25:31

had a very stressful situation

25:33

going on in my life with work and

25:36

I could not stay on top of my stress.

25:39

I had an episode with my right side of my face.

25:42

And then just as soon as that started

25:45

to clear up, my left side went numb. And

25:48

I had probably about two weeks of

25:50

not feeling well with

25:52

flare-ups. And I just thought, I'm done. I

25:55

am so done with this. I

25:57

have got to find out what is wrong

25:59

with you.

25:59

me because I can't continue

26:02

living like this.

26:04

I was 50 years old and I just thought,

26:07

I don't want to live another 50 years

26:09

like this. You finally hit the level

26:11

of desperation. I did and

26:13

I told my husband, I said, I'm ready

26:15

to find out what this is.

26:19

Feeling empowered by her supportive family,

26:22

Michelle was now determined to get to the root of

26:24

this

26:24

after more than 20 years of

26:26

suffering. This time, she

26:28

found a doctor that had her same determination

26:31

to figure out what was going on, Dr.

26:33

James LaGuardia.

26:36

So many patients come into us with kind

26:38

of similar stories, but she

26:40

had had several years of symptoms

26:43

that were slowly progressing. When

26:46

we hear that,

26:48

that's worrisome. When you hear a neurologic

26:51

disease that's chronic and progressive,

26:53

you worry that something major

26:56

is going on and they're having some kind of neurodegenerative

26:59

condition. Common ones

27:01

are things like Parkinson's

27:04

or Alzheimer's disease, other

27:06

conditions that eventually

27:09

can take the person from us. So that's always

27:11

a concern.

27:13

So I met Dr. LaGuardia. He was

27:15

so kind and he

27:17

was such a good listener and he listened

27:20

to me tell my story. He

27:23

listened to every symptom I had and

27:25

said, we're going to get to the bottom of this. And

27:27

he didn't make me feel stupid. He didn't

27:29

make me feel like it was weird. He just said, we'll

27:31

figure this out.

27:35

So he sent me for an MRI and

27:38

he did note that there were three very

27:40

tiny dots

27:42

on my brain.

27:45

Why did those three dots stick out to you?

27:48

What were your thoughts as to what could have

27:50

caused them or what they could possibly

27:52

indicate?

27:53

What they may have been is demyelination.

27:57

And that's where the central nervous system

27:59

myelin.

28:01

is affected by something and

28:03

that's what multiple sclerosis is. So

28:06

whenever you see spots, especially if

28:08

they're in a certain position in the brain, you're

28:11

concerned about multiple sclerosis. It

28:13

actually hurts we're fairly

28:15

peripheral and fairly small in

28:17

the brain and that's not typical

28:20

of MS but it is typical

28:22

of a bunch of other conditions. Everything

28:25

from vitamin B12 deficiency

28:28

to thyroid problems, lupus,

28:32

rheumatoid arthritis, a bunch of different conditions

28:35

all of which can cause systemic

28:37

inflammation and if the inflammation

28:39

affects brain arteries a

28:42

picture like that can form.

28:44

He said do you get migraines

28:47

and I said no I don't get migraines

28:51

and he said well

28:54

it's possible that you could be

28:56

having something called silent migraines.

29:02

I've never heard of this in my life. He

29:05

said it's

29:06

possible that you could be having migraines but

29:08

they're not causing headaches, they're causing your other

29:10

symptoms.

29:15

Finally Michelle had a name

29:17

for the cause of her symptoms after all

29:19

this time, after all the shame and

29:22

fear, she could be

29:23

empowered by a proper diagnosis.

29:26

I

29:32

remember when she got diagnosed I was on

29:34

the subway and she

29:36

called me and the train was getting ready to pull out and

29:38

I was like no I gotta get off this train I gotta figure out what's going

29:40

on. Then she explained

29:43

everything and I was just so

29:45

surprised. What

29:48

was her like excitement

29:49

level on that phone call and what

29:51

was yours? You guys must have felt for

29:53

the first time in 20 years, hope.

29:56

Yeah I was so relieved and

29:59

I could tell she was really really relieved. She

30:01

wasn't scared even about what

30:03

the diagnosis meant because it had

30:05

a name.

30:09

I'd never heard of silent migraines.

30:12

How common are they and how would you

30:15

define them?

30:15

In this office, they're

30:18

very common. Out in the real world,

30:21

not so common. And a lot

30:24

of times in the literature, they're referred to as

30:26

either complex migraines or

30:28

complicated migraines. And

30:31

basically, all it is is just

30:33

a migraine headache that also comes

30:36

packed with some other

30:38

symptoms that can lead

30:41

you to think something else is going on.

30:43

So it'll be a physical symptom like numbness

30:46

on one side of the body or weakness

30:48

of an arm or leg such that

30:51

people are always concerned when the

30:53

symptom is occurring. Are they having a stroke?

30:56

Are they having some kind of lack of blood

30:58

flow to their brain that's causing it?

31:00

So that's interesting. It's not that

31:02

silent migraines are so rare.

31:05

It's that they're rarely diagnosed.

31:08

I would say a lot of people probably

31:11

have these and don't realize

31:13

it.

31:14

People will have a numb

31:16

arm or something and they'll say, well, I

31:19

pinched a nerve. Or

31:21

they'll have part of their body feel

31:23

numb or tingling and they'll think, oh, I

31:25

slept on it wrong. But when

31:27

it happens again and again, and especially

31:30

if it happens in the face of pain,

31:33

a headache pain that usually follows

31:36

those physical symptoms, then that's when

31:38

we start to think, hey, this could be a migraine

31:40

syndrome and we can try different medicines

31:43

to see if

31:43

we can prevent it.

31:45

Dr. LaGuardia prescribed gabapentin

31:47

for Michelle in hopes of decreasing

31:49

both the frequency and severity of her flare-ups,

31:52

but not even he could have imagined the

31:54

life-changing effect it would have.

31:56

And the weeks were going by and I was

31:59

not having enough. flare-ups and

32:01

I thought this is too good to be true. There

32:04

is no way this medicine has cured

32:06

me and I went back in six

32:08

weeks and I said, I think

32:11

you've solved a mystery. I was

32:13

so excited to tell him I have not had any

32:15

flare-ups and

32:17

I'm only taking one pill a day

32:18

and I've had nothing and even

32:21

Dr. LaGuardia said I don't

32:23

really understand how just one pill is

32:26

keeping you from having episodes because

32:28

that's such a small dose and

32:30

it doesn't even stay in your system all day and I said

32:32

I don't really know how this is working but I

32:35

can tell you that it's working and it has

32:37

cured me.

32:38

Now that she's on medication

32:41

that seems to have eradicated

32:43

the issue, just tell me

32:46

how life is different. How's your mom different?

32:49

She is able to go through life

32:51

a lot more joyfully

32:54

knowing that she doesn't

32:56

have to just always be waiting for

32:58

this other shoe to drop in terms of her

33:00

migraines. I feel like she can just

33:02

make plans and think about the future

33:05

without worrying that she's going to have a migraine.

33:08

I just feel like this burden is off my

33:10

shoulders. I feel

33:12

so much happier and

33:14

I'm not always worrying about the

33:16

next flare-up and even though

33:18

I'm still working to maintain my stress

33:21

level, I know that in

33:23

my greatest time of stress I'm not going to

33:26

have a flare-up to add to that stress.

33:29

After dealing with two decades

33:31

of mysterious debilitating symptoms on

33:34

top of battling cancer, there was

33:36

finally a calm that came with a name

33:38

for her condition. One she hopes

33:40

to impart on anyone experiencing

33:43

what she's been through. I

33:45

really couldn't find a whole lot of information online

33:48

about it. I looked at Facebook groups, I looked

33:50

under hashtags, and I still to this

33:52

day have not met anyone else that

33:55

I know personally that has silent migraines

33:57

or that has them presented the world.

34:00

I do. I would love to find

34:03

someone else that has experienced this. Well,

34:06

who

34:06

knows, maybe someone's listening right now

34:08

and maybe you'll find

34:10

your silent migraine twins. Yes,

34:12

I wanted to share my story because

34:15

I want people to know that it could present

34:17

this way. But if there's someone

34:19

else out there who has the same

34:21

presentation and I could help someone

34:24

else.

34:25

As for Dr. LaGuardia, he continues

34:27

to impart a natural passion and optimism

34:30

for the work that he does. As for the

34:32

life-changing impact his diagnosis has

34:34

had on Michelle's life, he's gratified.

34:37

If I can use that silly old word gratifying,

34:40

it's nice to hear something like that. So it's

34:42

nice to hear something positive because

34:45

most of what you hear is negative.

34:47

But I guess the point would be don't

34:49

give up. If the symptoms

34:51

are ongoing for a number of months or years,

34:55

even if they're progressive, chances

34:57

are there's something that's fixable. And

35:00

whether you use Dr. Google

35:02

or try

35:03

a new doc or ask

35:06

your own primary care provider

35:08

to just take another look at you, step

35:11

back, take another fresh look,

35:13

maybe repeat some studies. A

35:16

lot of times chronic issues can

35:18

be, if not completely resolved,

35:20

at least made quite a bit better. What

35:23

do you want people to take away from your

35:25

story? I want people to know

35:27

that you shouldn't be afraid to find

35:30

answers, even if it's something

35:33

that appears somewhat mild.

35:36

Even though it was

35:37

something that I suffered with

35:40

that was able to push through and go on

35:42

with my life, it still

35:44

impacted me in many

35:46

ways. And I want

35:49

people to know that you should try to

35:51

find answers, that something

35:54

so simple has to be coming

35:56

from somewhere. There has to be a reason why you

35:59

are so happy. suffering.

36:06

My name is Michelle and for 23 years

36:08

I suffered with a mysterious illness that

36:12

was finally diagnosed as silent migraines.

36:26

She first heard about Michelle's story when

36:28

she reached out to us directly to share how much the

36:30

show has meant to her. If you have

36:33

a mysterious diagnosis journey that you think

36:35

would help other people to hear, please

36:37

email us at symptomatic at I heart

36:39

media.com. We've genuinely

36:41

been blown away by how much the shows resonated

36:44

with our listeners and would love

36:46

to hear more

36:46

of your stories.

36:49

On the next episode of symptomatic,

36:52

Chuck's raging fevers become increasingly

36:55

frequent and the various attempts at

36:57

treatment only add to the ticking

36:59

clock of his symptoms and diagnosis.

37:02

I started getting pretty

37:05

significant rashes on

37:07

my body and my heart function

37:09

had just taken a nosedive and

37:12

they really had to hit me with a couple of days

37:14

of high steroids just to try to get the

37:16

heart to recover. It would take one

37:19

very special

37:20

and dedicated doctor to redirect

37:22

the course of his symptoms. Symptomatic,

37:27

a medical mystery podcast, is a production

37:29

of Ruby Studio from I Heart Media. Our

37:32

show is hosted by me, Lauren Bright Pacheco.

37:35

Executive producers are Matt Romano and myself.

37:38

Our EP of post-production is James

37:40

Foster. Our producers are

37:42

Ciara Kaiser and John Irwin.