Ruby.

I was driving on the New Jersey Turnpike and everything sort of went blurry.

It was like somebody's stabbing on the side of the head with an ice pick.

She literally lost the ability to see doing sixty five miles an hour.

It's God holding the wheel at that point.

The disease is like a crow flying through the dark night.

Patients go months or years incurring damage.

In all of these.

Organs, I can't see, and I'm in terrible pain.

I gotta get some more safe, so I just gotta keep going.

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 Americans from some chronic illness, and many struggle for an accurate diagnosis.

These are their stories.

I'm Lauren brad Pacheco, and this is symptomatic.

Nika Beeman van Shehek is a force to be reckoned with.

In all areas of her life, she has pushed herself to achieve.

She's an Emmy winning TV writer, author of four books, and garnered a Peabody Award in her twenties for her coverage of nine to eleven.

Even as a young person, Nika was tenacious and full of personality.

I'm the oldest.

I have two brothers.

I have one that's exactly four years apart, and then we have what we call the oops baby, who was fifteen.

Years younger than me.

So I was picking colleges and he was carrying around stuffed animals.

It's funny because I was going to ask if they influenced your love of sports, But I bet you influenced their love of sports.

They have no love of sports.

I'm the only one.

I always say that my father had me.

I was supposed to be his son.

I was the one who learned to fix things with him.

I was the one who was more adventurous and who left home and was willing to go by themselves.

I'm more of his temper.

Unfortunately, so I was more of my father's son than his own son's.

And not just any organized sports.

You choose ice hockey and baseball once you get to boarding school.

Yeah, I said to my father, there's really nothing to play.

And my father said, you played Little League when you were a kid.

I said, yeah, but they don't have a female team.

They don't have female softball.

And he said, you know what Title nine says, if they don't have an equal or greater sport, then they have to let you try out.

So you go down there and you tell that coach that he has to let you try out.

And so I went down there and said, my father says, I have to at least be given a shot, and they said, all right, then we'll give you a shot.

And I made the team.

And then by the next year we had another girl.

So you know, I kind of ruined the whole team, or maybe improved it that much more.

I know that, having read your book, you were very close to both of your parents, who have both unfortunately passed, but you and your father seemed to have a particular bond.

How did his raising you impact your personality?

The greatest thing I think I got from him was that I understood that no matter what your circumstances are, and for him it was growing up poor and a segregated South with one parent, that you can find a way.

He knew he wanted to do other things, so he got on a bus and came to New York.

So at some point was homeless on the subway.

He ended up joining the police Academy, then going to the Air Force.

Then he got sick in the Air Force and ended up having to come out.

But he had done so many things.

Then he decided he was going to go to college.

He was going to get a degree, and so he got a job at NYU.

He actually, when he was at NYU, participated in the Freedom Writers to register people to vote during the segregated South, and they made a magazine, and the magazine ultimately got inducted into the Library of Congress.

And so I grew always seeing people writing and doing those kind of things.

At a young age, Nica was praised for her abilities in writing.

Her curiosity and investigative nature led her to join the school paper and go on to study journalism at Boston College.

There, Nica was a standout student and an active member of club sports teams.

She was headed towards the future at full speed, seemingly unstoppable.

Around this time, as you're getting ready to graduate from college, you start noticing that something is a miss in terms of your health.

In nineteen ninety three, I started having all kinds of what I consider unusual symptoms.

By the time I got to senior year.

I was like, I'm just always tired.

There's joint pains that I didn't expect to have.

I had dry mouth and dry eyes.

My eyes would burn to a part where my vision would actually get blurry, which was strange because I had twenty twenty vision.

And then I started having these debilitating headaches that I thought were migraines, and I'm like, what in the world is happening to me?

So You're frequently visiting the infirmary and getting no answers.

No, I'm getting a lot of tests for a lot of things, but all of them are coming out negative.

I didn't have mono, I didn't have meningitis, I don't have hepatitis.

So I started to collect things I.

Knew I didn't have, but that wasn't getting me any closer to what I did have.

This was just the tip of the iceberg, as varying symptoms began to disrupt her life, seemingly disconnected ailments that would place her on the long, frustrating, twisting path of misdiagnosis.

It wasn't until like a couple of years after them, when I kept getting sick, that at some point other people started to notice like this is happening too frequently.

As the years drag on, you realize that this is not going away, like this keeps coming every time somebody gets sick, I'm getting sick.

And as you start to really see the pattern.

So at this point a few years in to this, not feeling well is becoming a new normal for you.

But you move to New York City and are living your life when out of nowhere, you end up in the emergency room because of a massive bleed.

What happened.

I was very sick and I was having a hemorrhage and they said to me, we think you have PCOS.

You might have ruptured assist and that's what the problem is.

And I said, oh, okay, so I have PCOS.

I just need some medications.

So they give me medication for.

That, and I go, great, then I should be good, except for our wasn't because what I learned at some point was that we were treating a set of symptoms, but not all the symptoms.

So I'm going to a doctor for headaches that he goes, oh, no problem, we can just make your brain not know that it has pained, so we'll give you this drug.

And I'm like, Okay, no problem.

That's great, And I go I'm tired, and somebody goes, you know what's great for a fatigue?

You can just take some riddlin.

You'll feel much better.

You'll have the energy you need.

I'm just going to each individual doctor and getting them to treat whatever symptom they treat.

While Nika battles a mounting deluge of symptoms in New York, there is a doctor back in Boston whose work will lead to actually naming the unknown condition she's fighting in the dark.

I am John H.

Stone.

I am a professor of medicine at Harvard Medical School and a rheumatologist at the Massachusetts General Hospital.

A quick aside for those not familiar.

Rheumatology is the medical specialty that focuses on the diagnosis and treatment of rheumatic diseases, which are inflammatory and autoimmune conditions affecting the joints, muscles, bones, and connective tissues.

What your you to of rheumatology the multiorgan nature of diseases.

Have always aspired to be a good internist who takes care of the entire body, including the mind, and the challenges of treating the rheumatic diseases really drew me to the field.

Meanwhile, in New York, Nika is unwilling to let sickness dictate her life.

This fighting spirit fortuitously guides her to meet her husband Mark in one of the busiest and most demanding journalistic hubs in the city, the newsroom of WABC.

For someone who hasn't had the pleasure of meeting your lovely wife, how would you describe Nika?

Tough, soft, kind, caring, She's fun she's funny.

She a really good comedian when she doesn't try and be I think those are the ass I would use.

What do you love most about her personality?

She doesn't give a flying How do I say that?

She generally doesn't care what people think about the decision she's made.

If it is what is right or what is in her heart, She's going to hop over every obstacle and head in the direction where she needs to go.

Did you have any idea when you first met that she was navigating all these health issues?

No, I just thought she's a pan of the ass sometimes on a hard heartagg to crack.

But no, I knew that there was one time in the infancy of our getting to know each other.

I saw her taking pills at work and I was like, that's different.

What's going on.

Why do you need to take pills?

And she was explaining that she was having some liver issues at the time.

But then I had finished the conversation with I'm keeping all my organs, which made her laugh.

When things started to get a little more serious and you realized that you had deeper feelings forming for Nika.

What was it like for you to see her feeling so sick.

I remember some of the earlier times when she was not well.

That's where my frustration or the pain watching another human being you care about go through it brings you some pain.

And she was basically like, you have to knock that off.

I just need you to be strong.

With Mark's unwavering support, Nika continues to fight this unidentified enemy, but the unrelenting struggle manifests in more than just physical consequences.

The financial burden of dealing with her chronic illness is crushing.

It is devastating.

They tell you they don't discuss religion, don't discuss politics, and don't discuss money.

Even when you're struggling, you don't even tell the people who are supposed to be closest to you, including my parents.

How much it's costing me to be me?

I know that I've spent over a quarter of a million dollars out of pocket of my own money to keep myself alive and to keep myself releiantly functioning.

Did you ever get gas lit that it's in your head that maybe you didn't have all the symptoms you thought you had.

No, I did not.

They may have not thought it was as severe as possible.

So I remember going to one doctor and saying, this is what's happening.

He goes, but you're going to work every day.

Yeah, and you're still having a relationship.

Yes, Oh, then it's not that bad.

Then come back when it gets worse.

Over ten years into her struggle, Nika is still fighting through intense fatigue, headaches, joint pains, dry mouth and eyes, hormonal imbalances, treating each symptom in isolation, a decade of confusion and pain without a clear picture in sight.

This arduous trek is one that doctor Stone unfortunately knows all too well.

There are many diseases in which there is not a single diagnostic test, but it does require the clinician being familiar with the underlying condition and having access to the workup that's been done already.

How as a physician do you help patients navigate the unknown?

In terms of the psychological component, you.

Can only imagine the psychological trauma that patients endure when they go for years and go from doctor to doctor and test to test and biopsy to biopsy and are not given the correct diagnosis.

And it's critical to remember that patients are very fragile emotionally.

The clinician really has to keep that in mind moving forward.

It takes a long time to restore faith and confidence in the medical profession.

If it's taken years of misdiagnosis to get to the right place.

You're vast approaching fifteen years at this point without a diagnosis, and you've been so sick and in terrible pain for a lot of that time.

You keep pushing in your career in life.

Did you ever feel like giving up?

It was just one of those things where you just learned to keep it moving.

I wasn't raised by complainers.

No matter how sick anybody was or what was going on.

There was no excuses, you know, there's no excuse to not excel even if I didn't feel well, if I had to write it from my bed, that I was going to finish what I started.

And so it's very difficult to be that and be a good patient.

And the fundamental of how to be a good patient is not something that's taught to us, and it's something we're all going to need.

Nobody ever told me that it was okay to say, you know what, this is not right, and so you endure far more than you need to endure.

She is driving down road it has hazards, but she doesn't know the name of the road, and as medical issues start piling on to each other, she is determined to know what are these obstacles, what road I am on?

To make sure you make the right term.

When the turn is there.

That road is about to become even more hazardous for Nika, with a new deadly obstacle materializing out of nowhere.

I was coming back from Baltimore.

I was driving on the New Jersey Turnpike and I wasn't feeling well again.

I was having a terrible headache.

It was like somebody stabbing in the side of the head with an ice pick, but on panic, and I closed my eyes for a split second, I was in the second lane, opened my eyes again and everything was blurry.

I couldn't see.

We'll be right back with Symptomatic, a medical mystery podcast.

Now back to Symptomatic, a medical mystery podcast.

Over fifteen years out from the starter for Symptoms, Nika has been living with a mysterious illness now for over a third of her life.

She's been taking medication for insulin resistance, excess stomach acid, anti nausea pills, anti inflammatories, and a slew of painkillers.

She's had biopsies, blood tests, MRIs, ultrasounds, transophageal echocardiograms, spinal taps, and more, with no clear answer as to the root cause of her sickness.

It's now two thousand and nine and Nica's driving home to New York from a book tour in Baltimore when all of the sudden, she is hit with unthinkable pain.

I was driving on the New Jersey Turnpike.

It was like somebody's stabbing in the side of the head with an ice pick, and everything sort of went blurry.

I'm only like an exit or two away from home, but i can't see and I'm in terrible pain.

Oh my god.

I know that I'm in trouble here, and I'm starting to sort of, you know, have those internal conversations with yourself.

And I panic.

Were you terrified?

Yes, except for I also thought I gotta get somewhere safe, so I just gotta keep going.

And I don't know how to explain it, but somehow I saw the guy's break lights in front of me, and something in my head said, follow those red lights, and so I followed him off of the exit, and it happened to be the exit that I needed to Newark.

But as soon as I got to the ramp, I was like, Okay, now I'm on the shoulder and I'm just gonna stop here.

I stopped, and thankfully my phone was in the cup holder, and I called my then boyfriend and said, something is wrong.

You've got to come get amy.

What was going through your head?

And then minute between making that call and having your then boyfriend actually show up at the car.

That's sort of when the panic sets in because you're not sure what's happening.

I was like, am I going blind?

There?

Like some kind of tumor?

So then I'm sure you go right to the emergency room.

Right.

We go to the emergency room.

They're like, your blood pressure is elevated.

So they do the spinal TEP.

They really don't see anything.

We go to my primary care physician, he has been with me many years, and he says, I think you're having a stroke.

I was like, what the hell is he talking about a stroke?

So I do the tests, I do the stress tests and all that stuff, and he says, I mean, your blood pressure is relatively normal.

You probably just need to work out more and take this water pill and you'll be good.

Even after what felt like a near death experience, Nika is no closer to understanding the true cause.

Doctors have now added blood pressure medication, baby aspirin, and a diuretic to address what could have been a series of strokes, another inconclusive set of symptoms, another handful of pills.

The biggest challenge, though, I think is underscored by Nika's case, and that is getting to the right diagnosis in the first place.

The disease is like a crow flying through the dark night.

Patients go months or years.

Patients can be incurring damage in all of these organs at the same time.

The issue is not so much difficulty treating the disease now as difficulty getting to the right diagnosis.

As things get worse, symptoms compound, and Nika's ever growing list of medication confuses medical professionals who are unaware of her history.

Mark tries his best to advocate for her in situations that require background knowledge of her ongoing health issues.

Getting her to want to go to the er is not an easy task.

She's not feeling well, she's in pain.

So we take her to the hospital that's nearby.

We get admitted right away and we're going over her medications.

Almost every medication she takes a for an AWFU label use.

So we're trying to explain to this nurse that she is not a diabetic.

Don't treat her like a diabetic.

But no, she's on met formant.

She has to be a diabetic, and I'm like, she's not.

All these drugs are taken for all label use, and you start running down all her meds and they keep thinking it's for what it's normally prescribed for, and we're like no, And she gets taken away for testing and the police officer assigned to the er comes over and says, you have to leave.

Leave pardon why do I have to leave.

My wife is in the back.

I'm her medical proxy.

If any decisions made off any blood's drawn, if a band AI's put on her and I haven't signed off on it, this is going to be an issue.

I don't know if he believes me at this point, but we go into the waiting room.

Ten minutes later, Nikka comes out of the er door with her pants on, with her gown on but falling off, and the offers like, where are you going?

You can't leave?

She's like, oh, yes, I can.

I'm allowed to sign myself out at anytime.

Why is he sitting here?

Why is he not in the er?

And I look and I go told you.

The officer's like, uh oh, I messed up.

Now that's an extreme example of advocating, but sometimes that's what you have to do.

If I'm not there and she can't talk, they're going to treat her like she's a diabetic, or she's going to treat her like this or that, and they're not going to treat it properly.

Nika is determined to just keep moving, though she's no closer to answers.

She doesn't want to be held back.

But this thing continues to rip through her gaining momentum and showing up in new and terrifying form.

Twenty fourteen, everything changes.

I wake up one day and I have people say, like a goiter looking neck, it's like swollen.

It looks like a bullfrog.

And I don't know why.

And so I go to the doctor and she says, you have swollen lyft notes you have ad anopathy, and she.

Goes, ah, it's not a big deal.

You must have some.

Sort of infection.

It'll clear up.

And I don't think anything of it.

And it goes on three months.

It just stays like that, and then it starts to hurt physically.

To touch my own face, to wash it in the morning, it physically hurt.

This is the first time that you have something that is a physical manifestation of what you're fighting.

Yeah, something that's really impeding me in a way that I realize that I have to do something.

And I go and I go to a different doctor.

My doctor is not there that day, and I find the person who is on call that day and she looks at it and she goes, that's not good.

Can you go see a friend of mine?

And I said, okay, he'll see you right now, and I go to his office and he says, so, when would you like to have surgery?

And I was like, I'm a little confused.

Did she not tell you why you were here?

She didn't tell you she suspected lymphomo and that was what I realized.

I was like, whatever this is, it's killing me and I need to know what it is.

I wasn't ready to die.

How did they explain what was happening to your lymph notes?

We don't know what they're reacting to, but they're reacting.

So I have surgery.

They take them out, and I think I'm all clear, And a year later he goes, I need to do this again.

Because now there are more of them.

He did three surgeries for that, and then one corrective surgery to fix the scar.

Now I can go see an oncologist or somebody who could tell me what to.

Do with this.

And I said, there's really nothing to do.

He removed the whole thing.

You're good, and I was like, I'm not good.

I need to find an answer then, because nobody can still tell me why I had add anopathy in the first place.

Why am I constantly in a state of fighting an infection?

Except for I feel the same way I always do.

I did not want to die and I didn't want to be cut up into little pieces for the rest of my life.

And everybody just throw up their hands and go, I don't know.

That was no longer an acceptable answer to me.

When Nika activates her dogged search mode, what happens.

Does she always get an answer to her question?

No, is that an answer.

I'm just going to move around you.

I'm going to go over you, I'm going to go past you.

I'm going to get my answer.

She will hurtle over that obstacle, she will go around that obstacle, she will blow up that damn obstacle.

She's going to find an answer.

Nica recognizes that the key to finding the root cause of her sickness is to gather up the puzzle pieces into one box.

She contacts every hospital, every doctor, every medical testing lab she has ever visited, and organizes all for medical records.

I first started with like our TV doctor.

So I asked you, so, what kind of doctor would deal with like a constant infection?

Because that's what I was told.

The ad anopathy came from, Oh, you need an immunologist or a rheumatologist.

I didn't know those ologists, and so I found the Castleton Guide and it said ranks all the doctors in hospital the best of the best every year because they might be able to know the answers.

And so I wrote that down, and then I set about making an appointment with every single one of them.

You did something else, which was daunting, given the time period you accumulated all of your medical records.

At that time, they were just starting to do those things.

You know, now I can connect all different hospitals together.

We couldn't do that.

So, like you said, I had a spinal tap at Saint Luke Roosevelt, so I got to go there.

And I had this done at Saint Mary's.

So now I got to go there or call there.

I got to fill out the form.

I gotta fax it back.

I got to wait for them to mail me the slides and the CD disc with all your images on.

People don't realize like back then they used to actually give you the actual X rays.

It was an actual sheet of an X ray with my brain on it to show them when I had the tia.

And this is actually the disc when they did the sky out of my belly.

So I collected this whole thing, and I ended up with this ginormous folder.

For the first time, it occurred to me, maybe this is all sort of one thing.

Armed with only two or three pieces of that information, if it was felt to be reliable, could have made all the difference in the world.

So it's a terrible irony in this world where information flows so freely, in many cases, we still have a terrible time getting patients medical records across town from one hospital to another, and this leads to a real bottleneck, a real roadblock in helping patients get to the right diagnosis.

Nika's research brings her back to the list of the ten best roomatologists in New York.

The first three don't work out, but Nika keeps at it, and she schedules in to see doctor number four.

She had looked at my file beforehand, and some of the blood tests and the images that were done, and so by the time I had an appointment there, she had already had a good idea as to what she thought was wrong with me, which was an earth shattering moment.

Take me to that exact moment, because I cannot imagine what that must have been like for you.

Seventeen years.

Yeah.

It was odd because before she even examined me, she said, well, I looked at your file, and I looked at it.

I think I know what's going on.

And I thought, hold on every place I've ever been, I've given more blood than I probably have in my body.

Now, all of the tests and all of the doctors, and not one person thought to run this one test.

And she took out a piece of paper, her little pad with her name on the top, and she scrolled some weird, random collection of letters, and I was like, what is that?

As she said, it's a rare condition, but I think you have that.

She wrote down that I have something called IgG four rd.

Do you remember that phone call when she told you I have a name for it.

I think I know what I have.

Yeah, I would equate it with me being a kid at waiting for Christmas gifts.

She was as joyous as you can be knowing you have a medical condition.

But not knowing is oh man, not knowing is pain.

To not know, it's almost a crime against her, it's unfair.

But to know, to have beaten that, it's almost like a victory.

I know what this road is called.

I know what this journey is I know what is wrong with me.

It's like the mystery of a lifetime.

It's joy to find out that you know a name, but also sadness knowing that nobody else knows what the heck this is.

So now what do we do?

Nobody else has heard of it, Nobody else knows what that means for your life, for your expectancy, your quality of life, any of those things.

Now armed with a name for the condition she's been fighting for almost two decades, Nika applies her journalistic skills to track its foremost expert, a leader in the field who was one of the first doctors to identify IgG four related disease in the United States, Doctor John H.

Stone.

I should first say that IgG four is an antibody that we all have.

In IgG four related disease, levels of this antibody often become very, very high.

It is a multi organ inflammatory disease.

It's mediated by the immune system, but we don't really know what kicks off the process to begin with.

It can involve any organ system in the body.

So, for example, if the pancreas is targeted and the pancreas is a major organ then patients can become diabetic.

If the kidneys are involved, the kidneys can fail.

If the sinuses are involved, then sinus involvement can lead to a great risk of infections, which ultimately can be lethal.

The word that comes to mind that we use in medicine a lot to describe a disease that has many faces is protean.

It's one of the most protean diseases that I know of.

I imagine it is extremely difficult for pathologists and physicians to distinguish it from similar manifesting diseases.

That's right.

IgG four related disease mimics many diseases and is mimicked by many diseases.

It is remarkable when one talks to patients how commonly it comes up that they were misdiagnosed as having cancer.

They were told they had metastatic or inoperable cancer of the pancreas, the lungs, the kidneys, or that they had lymphoma, which is a cancer of the lymph system.

What is your role as a leader on the forefront of IgG four RG medical treatment.

Well, I have a history with this disease going back eighteen years now, and it wasn't even called IgG four related disease.

Then it was a couple of years later that the world decided IgG four related disease was the most appropriate name.

With colleagues at Mastheusetsal Hospital, I organized the world's first symposium on the disease, held in Boston in October of twenty eleven.

My group observed very early on that B cell depletion was a very effective therapy for IgG four related disease.

It took a long time to convince pharmaceutical industry that we ought to be studying B cell depletion in a formal way in a randomized, double blind, placebo control trial, and the results of that trial proved that B cell depletion was far superior to conventional treatment with steroids for the management of patients with with IgG four related disease.

Did it surprise you that it took her seventeen years to get a proper diagnosis and why or why not it did?

But I do think given that IgG four related disease wasn't even recognized to be a unique diagnosis until two thousand and three, and then it was really another four or five years before people in the United States began to become aware of the condition.

I think that goes a long way toward explaining why it took such a long time, though I think they're probably other reasons too.

Nika had been battling symptoms for six years before the disease was even named, in almost a decade before it was known in the US.

It is an unconscionably long time to wait to come to a diagnosis for a disease that is so treatable, So it's very unfortunate.

The diagnosis, to me, is also incredible because from what they did know, you didn't exactly fit the stereotype of who was being diagnosed with this and at that age, No.

I was too young, I was too black, I was a woman.

At that time, they thought it was men over white men over fifty Asian men, not certainly not black women in their twenties.

That was not something that most people thought about at all, or women at all.

And to me, it was even more interesting that it was discovered by guy in Boston when I was in bosson the whole time.

Because IgG four rd is still being understood, Nica's treatment is constantly evolving, the treatment itself, fairies, depending upon her given symptoms at the moment corticosteroid helps during flare ups, and an anti rheumatic works to keep them at bay.

A proton pump inhibitor deals with her gastrointestinal issues, and she takes medication to keep her blood pressure and cholesterol low.

Although Nika is now able to treat her symptoms with accuracy and an understanding of the root cause, she still has good days and bad days.

Mark is there with Nica through all of them.

Their lasting partnership is a walking example of in sickness and in health.

I said to him that I just wanted to make sure that he understood what he was signing up for.

I don't want to strap somebody with a burden that they may not be consciously thinking about.

I also wanted him to stop and think about it because he had a child, And I said, in what you choose for yourself is one thing, but now this profoundly changes the life of your child to be with somebody who's chronically you, because now they have to deal with sometimes Nica can't do this, and she can't do that.

She's having a bad day today.

What I learned is the children are highly adaptable.

His son just got used to it.

You go get the pills.

We made up games to play in the bed when I had days when I couldn't get out of the bed.

It's an obstacle.

It's gonna suck.

We're gonna get through this, but we're gonna have laughs about it.

We're gonna joke about it.

Occasionally, we're gonna cry about it.

I have to hide my tears.

She's got a great smile, especially when you get it out of her, especially when she's in pain.

I almost made it a mission to get her to laugh, to get a smile out of her, to dance a little in the rain.

Rain has been in her forecast a little too much, so to be ordered to.

Dance in the rain with her is one of my It's one of my guilty pleasures, just to get her to laugh when she's down, get it to have some fun and circumstance where most people are.

Like, how could you even matters?

To have fun.

It's one of the reasons.

Why I love her.

When we finally got married, they wrote about our wedding and the wedding section of the New York Times, and it said in sickness and health and then a wedding.

And I always thought of him that way that he always understood what those valves were long before we took them, because he never flinched about the in sickness part.

Oh boy, yeah, the sickness part.

I think a lot of people take that for granted.

It's a reality.

You can't make it to the altar and not mean that, because you know that's part of the roads you're.

On, Doctor Stone, What most inspires you or what can you leave us with about working with IgG four related disease patients?

I couldn't be more optimistic about the future for people living with IgG four related disease now.

I think there's every reason to believe medical brisk breakthroughs in IgG four or late disease are going to continue at a growing pace in the very near future.

We can understand the path of physiology, we can do clinical trials, we can get medications approved, but none of that is more important than educating people about the condition that they have, helping them understand it, and helping them learn to live with it.

Well, you are so resilient and you have just very quiet, strong confidence about the way in which you have navigated your health challenges.

Nico, what do you want people to take away from your story.

I think what I did learn was from my mother.

I remember once being like, I'm really sad that this is happening, and she said, because you're looking at the big picture, why don't you look at the small picture?

And I said, what's the small picture?

It's live long enough.

Just live long enough for today, Live long enough to feel better to get up in the morning, Live long enough for them to come up with a new medication.

Live long enough to finish that task that you have, maybe not today, but possibly tomorrow.

You just have to live long enough to get over the next hurdle.

That's all you have to do.

And when you take it and bite size morsels, it's really possible to see that you can get it all done.

I can't walk fifteen miles every day, but when we went to Lake George, I was able to walk as many steps as I needed to have a good day with my husband.

So I live long enough to just enjoy today.

I'll worry about tomorrow or tomorrow.

For more on IgG four related diseases, visit IgG four word dot org.

That's IgG number four word dot org.

You can read more about Nika's story in her book misdiagnosed the search for doctor house and follow along on her website Nicabeeman dot com.

I'm Nica Beeman van Scheck and I was diagnosed with IgG four RD after seventeen year search.

On next week's episode of Symptomatic.

From the moment Halee Sanchez started her period, she could tell that something was very different.

Suffering debilitating minstrel cramps and intense bleeding, Haley spent half of every month fighting just to stand up.

When she joined the Air Force as a medic, Haley did not predict how agonizing her symptoms would become.

I wasn't willing to risk being held back in boot camp, so I just kept pushing through.

The pain got so bad within an instant, it just kind of went black.

Consistently dismissed by military doctors, Haley suffered in silence for years before finally getting the test that would reveal a condition so rare that they had never seen it before.

As always, we would love to hear from you.

Send us your thoughts on this episode or share a medical mystery of your own at Symptomatic at iHeartMedia dot com, and please rate and review Symptomatic wherever you get your podcasts.

We'll see you next time.

Until then, be Well.

Symptomatic, a medical mystery podcast, is a production of iHeartMedia's Ruby Studio.

Our show is hosted by me Lauren Brightbacheco.

Our executive producers are James Foster, Matt Ramano, and myself.

Our supervising producers are Ryan Ovadia, Haley Aliah Ericson, and Daniel Ainsworth.

This episode was written by Haley Aliah Ericson and edited by Daniel Ainsworth.