EITM: MCAS 2/22/24

Mast cell activation syndrome, anyone?

Episode Transcript

(00:00):
It's a little bit of a roadto how I ended up there, but
I'll take you down with me.Okay, let me start on Reddit.
Suck Richmond. I'm reading, Ohno, I'm reading you're saying hi to
a Richmond. No, suck Richmond. Suck not sub sup Yes, suck

(00:21):
suck Richmond. I moved here abit ago and I'm a wrestling fan,
but unfortunately having found too many peoplehere that are fans as well. So
I thought it would be dope toget a group of people together that like
pro wrestling in RVA, and wecould talk about it and maybe get together

(00:44):
and watch the PPVs pay per viewsor even go to a few of them
as a group. Just throwing itout there. If you're interested, comment
your favorite wrestler below and I'll hityou up. I hope there was a
good response. He got a lotof p Like I think even he he's
shocked at how many wrestling fans thereare. See it at five a m.

(01:06):
Saturday morning, and that is forelimination Chamber. Elimination Chamber from Perth.
We have all our Australian snacks readyto go, like well, vege
of mine actually yes, ough,so you can say, your kids are
going to hate that. We're doingomelets as a nod to Bluey. And

(01:30):
then I got some Australian chocolates,Foster mixed nuts and sour candies. What
about a bloomin onion that was notavailable at World Market. Oh, I
can't wait anyway anyway, but thenyou'll know this. So I was reading
that about the sup Richmond. SoI was reading that and then that got

(01:52):
me to another story. But itdeals with execation, not excation. What
is it? What is it calledelimination Chamber? Now, remind me you
watch Raw or SmackDown or both.We watched them both it all. Are

(02:14):
you familiar with Raquel Rodriguez. Yes, she just came back this past Monday.
She did. She was a lateentrant in the Battle Royal for the
final spot in the women's Elimination.She did earn a spot in Saturday's Elimination
Chamber in Perth, Australia. Beenout for a couple months. While the
chamber represents one of the most aggressiveexhibitions in WWE, it's nothing like what

(02:36):
Rodriguez faced during her absence. Well, I saw that, I was like,
I'll read Diane, look this upmast Sell m ast mast Sell cell
activation syndrome MCAS GOSH MCAS is acondition where the patient experiences repeated episodes of

(03:07):
the symptoms of anaphylaxis, hives swelling, low blood pressure, difficulty breathing,
and severe diarrhea. This chick,what's her name, Rodriguez Raquel? So
she put together a video like aI don't want to say a compilation video,
but kind of like a video thattook you through what she was dealing

(03:30):
with. Holy crap. I sharedmy family this video last night and I
had to stop it because I startedcrying. I think it was the Spanish
version of James Blunts You're Beautiful.Oh that is It's funny. I didn't
know the song, but I waslike, this sounds just like You're Beautiful.
Yeah, it was just Spanish,right. This is horrible though,

(03:53):
Yeah, I'd never even heard ofit. How do you get it though?
Is it genetic? She wasn't bornwith it or is it something she's
anetic and you live with it toa certain age. How old is she?
How old is Rachel? Early thirties? Okay, so she didn't get
it till she was thirty. Shewas diagnosed in January, and I think

(04:14):
some of it can be of noknown origin. Its just idiots. It
just shows up. Yes, nothingcauses it, like no trauma, correct,
Because that's what I was wondering,like like there's sometimes where like sometimes
the body needs you if you havesomething that's laying dormant. Yeah, sometimes
the body needs a trauma to kindof get it going. And I thought,

(04:35):
well, maybe that's what hers thevideo. Diane, you have to
see the video. I see thestill shot with like you, I have
seen nothing, bro, you gotto see you still ain't seen nothing.
It's under her arms. No,watch, she's crying. She's crying,
so is Tyler. But she's crying. Look out, she's red, she's

(04:58):
splotchy, she's swollen. Yeah,it does look like she's having like a
horrible allergic reaction. Look at herneck, Look at her face. I
turned it off in this clip righthere, she's Oh, I didn't see
that. Look at her lip there. Yes, she's like I feel bad

(05:19):
saying she looks horrible. But shelooks horrible. Well, she's treating it
with tears. Look at her back, like that's nothing like the well look
at her front, Oh my god. Hey, Kristen, will you see
if you can find me somebody whohas MCAS or who's ever dealt with it.

(05:40):
Looks like burns, Diane, thoseare that's like hinds and stuff.
But you said it's not just adermatology based response. No, Diane,
what did what did? What didyou say? Well, hold on,
I got to give the number.Kristin, Will you do me a favor,
see if you can find somebody whoeither had MCAS, somebody who has

(06:01):
had mc A S because I wantto get to that part. Maybe somebody
in their family has it, andI'm assuming they know it is MCAS,
but I'll give you the whole name. Mass cell activation syndrome eight six six
to Elliott eight six six two threefive five four six eight. What are
the symptoms again? Heart related symptoms, low blood pressure, they said,

(06:25):
it's oftentimes can be sort of likeanaphylaxis with the swelling and the flushing of
your skin. Right, Okay,wetological, but that's not wheezing, shortness
of breath, diarrhea, nausea withvomiting and cramps, different type of elimination
chamber. By the way, it'sher butthole, Elliot. Everyone knew a

(06:48):
yeah, but it's like that's thatthose symptoms are too all over the board
for me. Now, the treatmentof some acute episodes should follow recommendations for
anaphylax, So you start with likean EpiPen if depending on the severity of
the symptoms and antistamines and stuff likethat. How do you get rid of
it? Doesn't sound like you cando. You have to do. You

(07:11):
just have to manage it. Soit just shows up as an unexpected guest
and it'll never leaves. Then howis she wrestling? Are you okay?
What was what happened? Oh?You know what? You suck three people
through the radio? No, youknow what's funny? I meant to do
that quietly. Yeah, Dan's lookinginto it the No, you know what

(07:32):
I got? Do you ever getit where? Let me tangent for a
second. Here we go. No, but do you ever get it where?
You got to bat in the cave. But it's like a real it's
almost like like like like almost likea piece of like dried skin, and
you could feel it flapping in andout when you breathe. So I got
I got like a thin drive,I got a thin drive. Boogie in
there? Can you hear me anapkin? Please not those those are the

(07:58):
good ones. Those are the JerseyMike ones. What are we saving those
for? Excuse me? Is therethe special Her Company? Special Spill Russia?
Shanna? All right now, I'mback anyway. Yeah, I don't

(08:20):
even remember what I was saying whenDiana interrupted me. And I'm busy looking
at the comments on that Reddit post. Oh no, but if it,
if it shows up out of nowhereand never leaves, what are you?
What are you supposed to like?I don't understand what you're supposed to do.
And then the story that I wasand listen, I've never heard of
Raquel Rodriguez. Come on, remembershe came in and made a name for

(08:41):
herself in NXT as Dakota Kai's bodyguard. No, but I got really nervous
when you said remember she came in? And I was like, oh no,
perhaps she's been in the studio.That was China. Oh that I
remember. I made her cry thejust like Raquel did to me last night
full Circle. The if Dane heardthe audio, she'd understand more. The

(09:03):
it's do you know the song You'reBeautiful? Right? I haven't heard the
other version though, just sing itin Spanish in your head, and that's
it almost as many you're beautiful andyou are most Yes, you don't know

(09:24):
those words. She dated Latin guy. Yeah, by the way, the
biggest problem was she didn't understand anythinghe said. But when he's saying this,
forget thing. By the way,you know what's impressive that James Blunt
can sing in two languages? Wheream I going? Line one? Hi,

(09:46):
elliot in the morning? Hello?Yeah, Hi? Who's yes?
Good? You want to roll upthe window? Oh here, let me
take you off of my Yes,all right? Is that better? Much
better? Yes? Are you familiar? Are you familiar with mc as Yeah,

(10:11):
I'm getting diagnosed with it while workingon it, because it takes a
long time to diagnose. Like ifyou're looking at it right now, you'll
see, like there's a thousand differentways that can present itself. How does
yours? How does yours? Howdoes yours? Present? A couple of
different ways? So like when Iget exposed to cold temperatures and stuff,
like if I go swimming in acolder pool or colder water, I'll get

(10:33):
like hives all over my body fora while, and like once you dry
off and more. Month if theyleave, or I'll get really low blood
pressure for like days, like weeksat a time, and like it's so
like we it took so long tofigure it out because it's like a whole
bunch of different things. I'll benauseous for a long time, like days

(10:54):
and days. How did they finallyhow did they finally zero in on it?
So it took forever because it's adifferent different things. I kind of
like figured it out because my bloodpressure was dropping, like someone like you
faint, well you can faint.So I was like looking up, like
why is this happening? Because likereally with like my weight and stuff,

(11:18):
we're blood pressure should probably be high, but it was like really low,
and so read it. Of course, you know, you're searching for things
that people are like, oh,m C as just happens to me,
and like all these other things startedfitting. Like I thought I was just
like allergic to chlorine and like stuffin like sea water, But it's probably
MCS. I mean, I don'twant to say that it is until it's

(11:41):
like ye, but like all theLuckily I'm not one of those people.
But just like the blood pressure highsand nausea, I'm thankful for that.
But what I do when I'm gettinglike Simpson is like it sucks. But
Allie, like really playing like justbread or just rice for a couple of

(12:05):
days and it goes away. Hey, you know what if that works for
you, then I mean you listen, you do what you gotta do,
right, Yeah, I mean youget really tired, rice, Hey,
let me know, let me knowhow that turns out. I hope everything's
okay. I know that you saidyou're in the process of getting diagnosed,
but I hope everything turns out okay, Yeah, I'll think it will little

(12:28):
fun. All right, very good. I appreciate it. Thank you,
ma'am. Good attitude. That's greatattitude. Pm A, Hi Ellie in
the morning. Hi is this night? Yeah? Hi? Who's this Hi?
It's from Purdicksburg. Yes, doyou have MC as I do.

(12:48):
We're actually trying to pin down whichspecific version of it that I have.
I just got my genetic test backand I am waiting for my follow up
from the doctor. Wow, Soyou're like that other lady where it is
it's very hard to diagnose it is. We actually thought that it was We
were looking at like regular autoimmune fora long time, and then I started

(13:11):
having like anaphylaxis episodes, and soI went back to get another skin test
done, and I reacted to thenegative control, which is just saline.
And I ended up changing doctors becausethe one doctor is kind of like,
well, now, yeah, that'snormal. I'm like, no, that's
not. So the second doctor wasthe one who went and ran a bunch
of tests, and when the likethe first round of blood test came back,

(13:33):
he was like, oh, yeah, it's totally like a mass cell
disorder. And now it's just genetictests and figuring out which form of it
it is, because if it's theone that I think it is, it's
called hereditary alpha trip to semia.Yeah. So it's basically just multiple copies
of this one type of gene.It's relatively harmless, right, So they

(13:56):
were talking about putting me on abiologic what is that? So, uh,
it's called zolaire. I think it'srelatively new, but functionally it would
make it so that it absorbs thehistamine response and so functionally I wouldn't have

(14:18):
asthma or allergies anymore. Oh,okay, that's pretty good. Do you
have the squords? No, Idon't thankfully. All right, hey listen,
I'm I'm hoping. I'm hoping thebest for you. Thank you.
Hey, you got it, thankyou. That's weird, man, biologics

(14:39):
are produced using living organisms. Ohit's like a flu shot or like you're
living salad bar the which I love. Now, I know we've only heard
from women. I was just gonnaask because of that. Yeah, is
it mostly like lupus is mostly womenduring child bearing years? Is mcas mostly
ladies? In reading a on it, it's about eighty twenty. Real.

(15:03):
I don't want a male to belistening who maybe has some symptoms think,
oh, but this is only forthe for the girls, right it is
not? No, no, Likewhen I got diagnosed with lupis, it
was it was like ninety ten.It was all women, wow, yeah,
and then you get it and you'relike, uh oh the but yeah,
that was ninety ten. Now beforelike post childbirth and before what is

(15:26):
it called, like before you getyour period, then it's then it's fifty
to fifty male female. But duringchild bearing years it's like ninety ten for
women. It's crazy. When youwent to the doctor, not to make
Raquel's story about you, right whenyou went, did you feel like they
were dismissing some of your symptoms?No, it was really frustrating because nobody.
Nobody tested me for lupis because theywere like, there's not going to

(15:50):
be a twenty one year old dudein here being diagnosed for lupus, right
right. Yeah. And it wasone doctor who has since retired, but
he was he was like, I'mgonna sit down here, get undressed.
I want to watch you get undressed, which was a very odd request,
see like your mobility, but hewatched me. Yeah, because mine was

(16:12):
very arthritic in natures stretched out.He made that under yesterday. But he
just sat there and watched me getundressed, and he was like, I'm
gonna test you for lupus. Iwas like, didn't do whatever you want?
Where am I gone? I'm alreadyjust you're sitting there watching me get
naked. Line five, Hi Elliotin the morning. Hey Eli? Does

(16:36):
this mean? Yeah? Hi?Who's this? Hey? It's justin and
great time to talk about guys withthem mcs. Huh wait do you have
it? Uh? Yeah, I'vebeen. I've been going through some diagnosis
and procedures from it. I actually, uh I have you to thank for
believe it or not. Though,about four years ago or so, you
were talking about Ayler's Denmos syndrome,right, and I was having some issues

(17:02):
with my health. And since thenI've found out what EDS is and it's
led me to m CAST. Andlet me put it this way, when
you're filling out Social security disability stuff, I have too many things to list,
but yeah, yeah, MCAST iskind of in this realm of pots
and everything where people just don't knowwhat's going on, and one thing presents

(17:27):
as something else, which presents assomething else. And because for me with
als Dan Loos and MCAST is actuallyreally related to Eric dan Los as well,
my body is just on fire allthe time. EDS is a connective
tissue disorder that presents in different ways. So like my joints are shot and

(17:48):
they don't know if it's the mCAST making me sweat, if it's the
POTS, which is partulal, youknow, a whole other thing. There's
chronic fatigue syndrome that comes along withit. It's under this like umbrella of
you know, if I have tobe honest, it's it's under umbrella of
things that doctors don't know and we'rereally just at the cusp of trying to

(18:11):
figure all of this out. Wow, covid Ha has actually been a huge
help for it because of the cardiovascularissues and the chronic fatigue. It's actually
brought some light to this stuff.But but yeah, I haven't seen that
video on i'mcass. But the symptoms, the nausea, the sweating, the
fatigue, it's horrible. Yes,there's a lot of that too. Yep,

(18:36):
vomited and in the pig this morning. So yeah, Oh dude,
that sucks. Bro Yep, LikeI would take I mean I have,
but I mean I would take diarrheaevery single day. I hate vomiting.
I hate vomiting. It's it's horriblethough, because it's it's partly from the
neurological part with the the the issuesthat go on with the system, because

(19:00):
it's partly your neurological system. It'spartly your you know yourselves and an issue
with them and everything. But yeah, there's just a ton going on with
it, and it's like a fullstruntal of salt on your body. Hey,
like, how did they control you? I'm still trying to figure that
out. Oh dude, that sucks. Yeah, it's it's it's not fun.

(19:23):
I mean from the flex i.I had a pout of a fib
yesterday or the day before. Itjust kicked in for no reason, and
my body just goes goes crazy.So they don't fully know if it's been
from mcast because of this umbrella likeI was talking about, But it is
under an umbrella many different things thatjust your body just goes haywire and goes
berserk. It's kind of like anautoimmune or lucas like you said, where

(19:45):
your body is fighting it itself,but they just don't know. So I'm
happy you guys are talking about itand yeah, do you do? You
have the last thing and then I'lllet you jump. Do you have to
be real careful about like going outand doing things. If I got to
be careful if I'm going to benauseous if I eat something, if I

(20:10):
go on a trip or whatever,which is very rare that I have to
be careful of what I eat outto dinner. You know, if you
want to have a night out withfriends, sometimes you have to rest all
day and on Saturday go out fora few hours and then you rest all
day on Sunday because your body justcan't take the the the assault that it's
always under if you will, wow, well, dude, the well,

(20:32):
I'm glad that you called. Ihate that you have it. I mean
that's horrible. Well, thank youvery much. No, thank you for
talking about it. It's it's notfun. It's a lot of doctors.
It definitely affects your whole family andeverything, because it's not just the person
dealing with it, it's you know, they're the spouse, the sisters,
brothers, and an uncles, parents, everybody. So well, think of
me the next time you puke.No. Well, I mean, I'm

(20:56):
just trying to be nice. I'mtrying to be good. Hey, I
appreciate it. Be well, myfriend, thank you. Oh my god.
Quite a few articles about long COVIDtriggerings, and also Becky writes on
Facebook, I tried doing cupping andit led to a severe reaction, which
they believe, even though it's notclinically diagnosed, is mass cele activation.

(21:22):
Do you have the squirts? No, you were just in the bathroom.
I have to pee? Okay,No, how do you know that she
went to the bathroom because he followedme out and asked me if I wanted
to go into the men's room andI said, no, I'll use this
one and please wash your hands.And guess what he didn't do? You
were out before me and I tooka while because I was washing my hands.

(21:45):
Okay, how old are you?Who me? Why? What's wrong?
Last I checked? Seven? Igotta take a break. Where am
I going? Line? Win?Hi? Elliet in the morning. Hey,
it's Aaron and Bartle. How arey'all? I am, well,
I'm gonna feel bad in a minute. Why so I have mass cell as

(22:11):
well because it's part of my allergy? Oh my god, what don't you
have? You have? You havebunions, you have everything. You've got
ibs or like or you're missing abowel like. I don't even you've got
everything, Taylor, she has thattoo. I don't even know what Hayler's
dan Los is. You just saidher as was connected. Oh you got
Jardians, You've got sky Rizzy,you got all of it. Get the

(22:37):
windows out of cars. God damnit. I think I told you all
this before, but it's related.It's because the mass cell of it was
four and a half years ago.I ended up being found by the paramedics
goal in my bathroom floor, completelyunconscious, that had lost complete control of

(22:57):
my bowels. And it was amass episode. Yes, oh god,
Aaron, the things that you admitto. She's she's told us that before
hey, y'all come in, Igot a puddle of poo. You know
that. The amount the amount oftherapy I've gone through to try and get

(23:22):
past that one. And when Ihave to tell the story to like get
past it, I was like,And when I was in the ambulance and
I had species on my hand,they didn't have anything to wipe at all.
So I got to the hospital withspecies in my hand, hurt.
So you were laying on the bathroomfloor, bagoon and butt all wide open

(23:45):
and just tishing yourself. I hadno memory of leaving the front door when
I was on the phone with theparamedics, like truly begging to get here
because I thought I was dying,truly thought I was going to die.
It was. It was the worstI've ever gone through my entire life.
Don't even have a clue how Imade it to the bathroom. And when
I came to there are probably sixparamedics and firefighters in my bathroom, folding

(24:08):
their nose and they sent all thehot ones. Hey, so what a
aaron? What did they do toWhat did they do to treat you?
So this is the weird thing aboutmasssell of it mimics certain things. And
so I take zertech every day andI carry an EpiPen everywhere I go.

(24:30):
But go backwards to like two thousandand two. For six years, I
had a deadly shellfish allergy. We'retalking like, went to the allergist,
got the back test for all theneedles, everything came back positive for shellfish,
carried an EpiPen with me, hadseveral episodes epipend myself, went to
the hospital for eating like a kaysadia that was cooked on a grill of
shellfish on it, bloody mary withclam juice. Fast forward. I finally

(24:55):
get in with this like top notchallergist. He's like, you never had
a shelfish Oh sorry it up intwo thousand and eight, went back in
protesting it was all gone and Iwent, what do you mean it's all
gone. They're like, we've neverseen this before. Clearly your shellfish allergy
went away. And I'm like,I don't understand. Fast forward to two
years ago. I'm sorry, fouryears ago. After that episode of episode

(25:15):
in the bathroom, this really goodallergist told me, I was never alerted
to shellfish. It was the masscell presenting and it's all about the histamine
and how it releases in your body. Wow, that's crazy. That's crazy,
and you know, and it's weird. And I mean, listen,
I don't know how long I've knownyou now, but I never knew that
you had I know you got everythingelse under their son going on, but

(25:37):
I until this, until this,Jennifer Rodriguez, girl, I've never eaten
Raquel Rodriguez. I've never even heardof this. Yeah, it's it goes.
It's one of those things that goesalong with certain other things that like
if you have pots, a lotof people have mass el if you have
ellen standlos, a lot of peoplehave pots and mass cells. So it's
like check check check. It justkind of comes along with other things that

(25:59):
you have. And I will saythe X at the time when I got
in touch with him, I said, coming straight to the hospital, do
not go home, And he wenthome and cleaned the entire bathroom. I
bet I wouldn't have done broke upwith them, but hey, the toilet's
clean, right good, I'll breakup with you. You're cleaning up.

(26:21):
We're done. And by the way, you know you know who, you
know who we should really think forall of this, Like that guy said
that he was glad we're talking aboutit. We just learned that Aaron and
Barlow's got like we've learned a lotthis break. If not for somebody going
sup Richmond, I moved here asa wrestling fan, I never would have
ended up down this road.