Introduction

Kerry Reller 0:29

MCAS is everywhere right now. It's on TikTok, it's on Instagram, and patients are coming to our office asking, "Could this explain all of my symptoms?" Sometimes it might, but having a lot of unexplained symptoms isn't the same thing as having a diagnosis. Welcome back to the Get Healthy Tampa Bay podcast. I'm Dr. Kerry Reller, and this is part two of my conversation with Soondoos Rasheid Browning, one of our physician assistants at Clearwater Family Medicine and Allergy, about what she brought back from the Collaborative Care Summit a couple weeks ago. Today we're talking about mast cell activation syndrome, hypermobility, what happens when you've seen multiple specialists and still don't have an answer, and how we avoid forcing a collection of symptoms into a diagnosis that may or may not fit. And ultimately, we're talking about why good collaborative care isn't just about specialists talking to each other. The patient has to be part of it, too. So let's get into part two

Soondoos Rasheid Browning 1:27

So

Understanding MCAS

Soondoos Rasheid Browning 1:28

with MCAS, it's the mast cell activation syndrome, and yes, we're all hearing so much about it. I felt when I was in PA school, actually, we didn't really cover it. I'm gonna be 100% honest. So when I started seeing more patients with symptoms of it, I had to do a little more research myself. So this is why I take my happy butt into summits, conferences, and

Kerry Reller 1:54

But let me pause you there, because they didn't cover this in med school, and it is

Soondoos Rasheid Browning 1:57

see you

Kerry Reller 1:57

new and being researched. You don't- you're not gonna know about it or think about it unless you're going to these conferences, okay? So it's not, it's... I do- they are, covering it in allergy fellowships and things like that now, but,

Soondoos Rasheid Browning 2:10

Okay

Kerry Reller 2:10

was, not a thing. If you're not even going, if you're an allergist and not going to allergy conferences, you're not gonna know the updated diagnostic criteria. You're not gonna know a lot of these things. So that's why we go to conferences and have to do,

Soondoos Rasheid Browning 2:22

It is. That's

Kerry Reller 2:23

CME, and,

Soondoos Rasheid Browning 2:24

so important

Kerry Reller 2:25

to. So continue. I didn't, I just wanted to throw that out there

Soondoos Rasheid Browning 2:28

yeah. So important though, but like I, I was like, "Okay, did I miss something in school? Was it that much of a fire hose?" And I swear to you, I went through all of my old notes. I was like, "Nope, not in here. Not in here." I wanted to see if there was something preliminary that maybe it just went over my head, but no. So there's

Recognizing Symptoms vs. Making a Diagnosis

Soondoos Rasheid Browning 2:47

a difference between recognizing the pattern and proving a diagnosis when it comes to MCAS, right? I have patients that have come in with just a multitude of symptoms w- that range from, "I've seen every specialist, GYN, GI. I'm in the emergency room all the time. I feel like I'm gonna faint. I feel sick," right? And then they're telling me, "I might have allergy symptoms. I'm not really sure. I saw this on," like you said, "TikTok," or, "I saw this on Instagram while I was doomscrolling one night, and then I did research on it." And then they come back in to, to tell me what they found, and then we start having that collaborative discussion, patient to provider. And the symptoms make me sometimes think myself, "Okay, this might be mast cell activation," because this is what I read, too, when I went down that rabbit hole of studying. But at the end of the day, I've always known when doing medicine, you have to just have it as a differential versus an actual diagnosis, right? So we have to investigate it. And usually before I tell a patient, "Oh, you have MCAS," right? You have to actually establish it beforehand, so you and I had

Testing for MCAS

Soondoos Rasheid Browning 4:04

talked about it, and you were like, "Don't forget to order these labs," and all this other stuff. And great part is that Dr. Reller puts together an order set for these things, so she makes life so much easier in office. But it does help to have the labs already ready for your patient so that you know what you're ordering. But you have to communicate it with the patient that their the collection of urine that's going to be done is done when they are feeling well, not when they're having an acute symptom. And then when they develop acute symptoms, they need to go and get their tryptase levels tested so that we can see if there's changes between when they're feeling well and their tryptase levels. And there's essentially a number difference that has to be met, but do we always get a positive result?

Kerry Reller 4:55

Yeah, it's you wanna get a baseline tryptase, right? And then one when they're having symptoms. Usually within 30 to 60 minutes if

Soondoos Rasheid Browning 5:01

Yeah

Kerry Reller 5:02

usually within four hours. And I think it's 1.2 plus the baseline that would be like it's considered positive

Soondoos Rasheid Browning 5:10

And how often in clinic have you been able to get positive tests yourself?

Kerry Reller 5:14

times the baseline plus two. Yeah.

Soondoos Rasheid Browning 5:18

Yeah.

Kerry Reller 5:19

How long ha- I have not had a patient successfully get the symptomatic lab draw

Soondoos Rasheid Browning 5:25

Yeah

Kerry Reller 5:26

in our practice. I... And so yeah, so I don't know. I, they have a baseline that's normal, like they're not having elevated baseline tryptase, which if that's when we are suspicious with other diagnoses like, Hereditary alpha-tryptasemia. But, so I don't, we don't have, anybody with a high... I have some people with a high baseline, I should correct myself. I know there's a young kid with one, but with the baseline tryptase. But then the point is that they haven't gone to the ER or get that emerging test with the, the change. So I don't have any official diagnostic criteria based on the tryptase alone to say anybody has MCAS, if that makes

Soondoos Rasheid Browning 6:05

Yeah. A- and that's the hard part because then you start thinking, "Okay, I want this clinical history to make sense, and but I really do need objective data and evidence," right? And half the time you're not gonna get that, or you could get false positives too, and we don't want to be in a place where we're over-treating somebody or telling them they have something that potentially that they don't. So how

MCAS Symptoms and Diagnostic Criteria

Soondoos Rasheid Browning 6:30

many times have you felt that you might need to repeat a study like that? Like-

Kerry Reller 6:35

Yeah, no, I honestly would repeat something before giving them a diagnosis such as this. But really, that's only one part of for MCAS diagnosis,

Soondoos Rasheid Browning 6:43

Mhm

Kerry Reller 6:44

A lot of people will come in with multiple symptoms, and part of it is having two I guess sy- symptoms, right? So

Soondoos Rasheid Browning 6:50

yeah

Kerry Reller 6:50

from different categories, right? So you mentioned GI, you mentioned allergy, right? So we're talking about hives, swelling, anaphylaxis is a big, red flag there. GI, abdominal pain, diarrhea, nausea, flushing, things like that with the skin. But you also mentioned GYN, which I haven't heard anybody else say, which is interesting because I was recently listening to a collaborative lecture with a bunch of people on MCAS and it, they were, it was from GIs giving the lecture, and one of the people mentioned, endometriosis is somehow getting in this mix here. So

Soondoos Rasheid Browning 7:22

Yes. I guess

Kerry Reller 7:22

now brings in GYN, and I hadn't h- that is not in diagnostic thing I've seen yet. So yes, we've got the GI system, the cardiovascular system, you know, respiratory clearly, and skin, but I hadn't heard anybody include the GYN yet. So yeah, endometriosis is somehow being associated with this. the one we haven't talked about was musculoskeletal, but you were gonna bring

Soondoos Rasheid Browning 7:46

Yeah.

Kerry Reller 7:46

up in a second, too, so

Soondoos Rasheid Browning 7:48

Yeah, so

Hypermobility and Ehlers-Danlos Syndrome

Soondoos Rasheid Browning 7:49

the musculoskeletal is a lot of these patients devel- start being very hypermobile or they have these fractures, but unexplained fractures, and they're just like, "Oh yeah, I- I've always been susceptible to fractures." Or even, So specifically speaking in regards to a patient that I'm working with now, she's come in seeing everybody till now she's "I need a primary care to piece together everything, because I feel overwhelmed dealing with it." So we were looking at everything. I did her intake, and I'm like, she's extremely hypermobile. Let me see what's going on with her, because she also was telling me she's having these syncopal episodes. We checked to see if she had any orthostatic hypotension. literally went through everything with her till one day I said, "All right, so I wanna just do an office visit where we just check and use a Beighton scoring so that I could see if potentially you clinically meet criteria for EDS, which is Ehlers-Danlos. And she met a lot of the criteria outside of the cardiac. She did see a cardiologist. She was never told that she had any mitral valve prolapse or regurgitation. So those criterias weren't necessarily met, but everything else, it was five out of five. So when sitting and talking to her, I was like, "Listen, it's not a definitive diagnosis definitive always requires additional workup. But this is somewhere to start, right? And this kinda helps you know what are things you should be watching out for, being a patient that potentially has EDS, right?" But still working on MCAS with her, still working on a whole bunch of other things with her, because I don't truly believe a lot of the time that the, that it's a one-problem thing. It could be overlapping problems, and that's why I always think, okay, listen to the patient all the way through. And mind you, like, when you have to do these types of visits with a patient, what was initially scheduled for a nice 20 minutes visit ends up being 40 minutes because these patients are lost. They're at wit's end. They've seen everybody, and they are looking for someone to come and piece it together, because other providers have done the tests but not necessarily gone into detail with what the test really had to offer. 'Cause she brought me certain things and said, "I don't know what this means. What are they trying to tell me with this?" And I feel like as primary care, our job is breaking down things to a more understandable one-on-one level with a patient. When specialist care do their job in specialty, do review things with their patients, but we always have to reinforce that review

Kerry Reller 10:55

Yeah, I wanna apologize. I misspoke and jumped the gun a little bit because we were talking about MCAS and the diagnostic criteria, and I jumped over to MSK, which is not part of the diagnostic criteria for MCAS, but you mentioned Ehlers-Danlos, which is associated, we think, with MCAS. Nobody really knows anything yet. And, POTS, you alluded to the cardiovascular thing, which can be associated to MCAS. But they are not part of the diagnostic

Soondoos Rasheid Browning 11:21

No, no. It's more so overbite

Kerry Reller 11:23

the gun. We were talking about MCAS, and we talked about labs, right? We talked about the symptoms and needing, different organ systems, right? And the thing we didn't mention was the third criteria

Treatment Response and MCAS

Kerry Reller 11:33

is actually treatment response

Soondoos Rasheid Browning 11:35

Yes

Kerry Reller 11:35

something to stabilize the mast cells. We're talking about mast cells,

Soondoos Rasheid Browning 11:39

mhmm

Kerry Reller 11:39

give off, All sorts of inflammatory markers and including histamine. So one of the mainstays of the treatment of the MCAS and the third criteria is, giving antihistamine, see how they respond, giving mast cell stabilizers, seeing how they respond, maybe even an IgE zoler and seeing how they respond. We kinda skipped that and jumped into MSK just 'cause it's associated, and have, I knew you had this patient that you've been kinda working up for it and using those beighton score criteria. But I wanted to go back and explain the rest of the MCAS

Soondoos Rasheid Browning 12:08

Absolutely

Kerry Reller 12:09

'cause I jumped the gun. But yeah, I don't know if you have any more comments on the MCAS, like, diagnostic criteria. And it's so good that this conference clearly with the dermatologic overlap, the allergy overlap, I think you said GI as well that's a huge thing that you're gonna hear about, and plus it's all over social media,

Soondoos Rasheid Browning 12:25

yeah. It's just more so saying listen to all of the symptoms and all of the problems to lead you somewhere, because yes, criteria can help you get the diagnosis, but sometimes we're so focused on criteria That we are like, "Oh it doesn't meet the criteria, so now the test answer must not be this." And 'cause my mind still runs in, "Oh doesn't meet the criteria. Gotta include that test answer. Now I'm down to the 50/50 choice." And that's not how it is when you treat a patient, because sometimes they'll meet a criteria, sometimes they won't. Because maybe they won't have hypersensitivity to one thing over the other, but like you said, the treatment at part of that triangle is, they have to try the treatment. The Xolair would help, right? And if it helps, then would that necessarily be part of diagnosing them with MCAS at the end?

Kerry Reller 13:22

Yeah. As long as we rule out, hereditary alpha-1 antitrypsin, rule out mastocytosis and things like that. But we're not gonna go into that today. That's

Soondoos Rasheid Browning 13:28

Yeah. Yes, but it definitely we go into the differentials, gotta go-

Kerry Reller 13:33

do that all in 15 minutes, right?

Soondoos Rasheid Browning 13:35

Yeah, we do so much

Kerry Reller 13:37

kidding. no, we have to bring them back. But, what I was pointing out with that is that this is such a complex disease state or whatever we wanna call it, syndrome I guess, and there are people who are dedicating clinics just to these, for these

Soondoos Rasheid Browning 13:54

Yes

Kerry Reller 13:54

though. And if we need to send them there, whether they're virtual clinics or in-person clinics, like that's a possibility as well. Yeah. 'Cause if they just need more time to do that. But anyway, we do a lot of that in the office as well. Yeah. I think we've covered so much. Is there any like main... Like you've learned so much. What's like, you've already started doing things differently I guess, like in the office since your conference, which is great. Is there anything that you would say that we need to rethink how we've been doing something?

Soondoos Rasheid Browning 14:24

Ooh, that, that's a little gutsy of me to say, "Hey, I'm a 90-day new PA and we gotta do things different."

Kerry Reller 14:32

All right. We can skip that question. That's a good point.

Soondoos Rasheid Browning 14:35

Maybe next year. Maybe next year I'll be like, "So this is what we should do different." But no, actually I feel

Continuing Education and Collaborative Care

Soondoos Rasheid Browning 14:40

like we do a lot of things great in the office. I think everybody comes from a different modality of care within the office, and how everyone understands, interprets medicine is important. Yes, we learned everything by the book to take a test but at the end of the day, is it applicable clinically always? Not really, because our tests are dated to five years ago of treatment, if that makes any sense. So a lot of our learning within school is very

Kerry Reller 15:16

mean it's

Soondoos Rasheid Browning 15:17

backdated.

Kerry Reller 15:17

Yeah.

Soondoos Rasheid Browning 15:18

yeah, like it's very behind.

Kerry Reller 15:20

All the research and stuff that's going on, that's not

Soondoos Rasheid Browning 15:22

You...

Kerry Reller 15:23

tests and stuff that we do.

Soondoos Rasheid Browning 15:24

Yeah

Kerry Reller 15:25

go to conferences and learn the cutting edge things and try new things even if it's not evidence-based, like

Soondoos Rasheid Browning 15:30

Yeah.

Kerry Reller 15:30

out on a lot of stuff I

Soondoos Rasheid Browning 15:32

Yeah, and if you're not seeing a patient and then going afterwards after seeing the patient and saying, "I'm gonna go into Open Evidence or UpToDate for a little bit and try to figure out something outside of what I learned in the past," then you kinda get stuck into using old treatments or staying on the steroids versus thinking outside of the box. I think collaborative care in general was just being part of that summit, and doing what I do in primary medicine it does require that collaborative care aspect because I really didn't see myself honestly doing primary care. Jumped into it headstrong towards clinical year. Initially, I had no desire in taking care of multiple problems. I was like, "Give me one problem." That's it. But then you realize, oh that one problem of I don't know cardiac or derm or whatever, they actually have multiple problems still, so might as well just see all the multiple problems, stay fresh on things. I always am a big believer of keeping yourself educated, listening to others collaborating with providers that you're working with going outside of your comfort zone today was one of them for me, so

Kerry Reller 16:51

That was, it's good

Soondoos Rasheid Browning 16:52

You could tell everybody. Sh- she hit me up Wednesday and she was like, "Hey, you wanna do a podcast?" I was like, "Sure. I'm terrified. I'm not ready. I don't do these types of things." So she's like, "You'll do fine." I was like, "Okay." But I th- I just think,

Kerry Reller 17:09

that

Shared Decision-Making with Patients

Soondoos Rasheid Browning 17:10

I think it's important that we keep on doing things that put us in in a collaborative care setting because it'll also help us in shared decision-making. I think we need to start doing shared decision-making with our patients as well, not necessarily giving them the the opportunity to tell us what they want always, but questioning why what they want worked for them in the past and what's going on today that might not be 100% why what they want will treat it. So being respectful with them and asking them, "Okay here's what evidence tells me. This is what a study has said," and not just some kind of study that has 12 patients that was done, right? I'm more so thinking, "Okay, this is a meta-analysis study. This is a true double-blinded cohort study." Seeing something that is actually really studied in depth and giving a patient reasonable options, giving them time to think it over rather than saying, "I'm prescribing this today." I've found more often than not if I tell somebody, "This is what your options are," write it down for them, tell them to read it, and that they can schedule back or message me via portal, more often than not they come back and say they're willing to try something that I'm recommending because it gives them the opportunity to actually understand something outside of the couple minutes

Kerry Reller 18:37

I feel like I have that conversation a lot with menopause care, which is interesting. Maybe they're not someone who's educated themselves with social media with about menopause and thinks everything is related to menopause. But I'm like they're having a lot of these reported symptoms that I know are could be from menopause." And I'm like I think you might wanna try some, estradiol cream and progesterone," right? So I will give them sources to go learn about and read, and then, "Hey, let's come back and see if you, I think, those things identify with what, you're experiencing," instead of, "Go see the cardiologist 'cause you're having palpitations. Go see the psychiatrist 'cause you're having anxiety and depression and things like that," right? So I will, essentially use we have these screeners and tools that are validated sometimes in medicine, and they have some menopause questions and things like that. So I will say, "Okay, go do this. Go read this. Go follow this person on social media. Come back and tell me what you learn, and tell me if this is you. Should we try this medicine?" So I think it's a similar approach of what you're saying. So the patient can feel, valued that they are making the right decision for themselves too. And that's definitely different than historical medicine where, I'm doing this, you do it or else.

Soondoos Rasheid Browning 19:47

Yes, or else, right?

Kerry Reller 19:49

Yeah.

Soondoos Rasheid Browning 19:50

but to touch on that menopause piece as well, it's very difficult because you've gotta think how much shame there is for women who are older to actually discuss certain things when it comes to sexual health and what their symptoms are because of the fact that these things were not discussed in the time when they were younger, right? So maybe in another 20 years from now, if you and I are still practicing medicine, it might actually be different. They might be the ones starting to come in and telling us, "Hey, estradiol's a thing. Give it to me. I'm ready. I don't like this anymore. I don't like the way that I'm feeling." "Oh I heard this is what's available to me. I'm ready to start HRT," so those are different things, and I think all of these things come with time, like we were saying, old medicine versus new medicine

Kerry Reller 20:41

I hope that's not 20 years from now. I hope that's like months from now

Soondoos Rasheid Browning 20:45

I don't know.

Kerry Reller 20:45

people

Soondoos Rasheid Browning 20:45

I don't know. We need more social media telling people, "Oh, start your HRT."

Kerry Reller 20:51

one thing we didn't discuss with itching and oddly hives and treatment and things like that, there's a very much associated estrogen component to that, that I don't wanna go in today, but I just wanted to mention it since we just brought up menopause. But yeah, that is in a whole nother can of worms essentially that we could be discussing with the itching thing. But hormonal re- related, which I don't think we up. You mentioned several other pathways, but not

Soondoos Rasheid Browning 21:19

Yeah.

Kerry Reller 21:20

Yeah.

Soondoos Rasheid Browning 21:21

Yeah. So more so what was discussed was the IL-4 pathway going into type two inflammation and the, yeah, the IL-31. So the, because those are the... But IL-4 being one of the biggest pathways that is highly treatable now with Dupixent.

Kerry Reller 21:40

Yeah. Wow, we've covered so much. I don't

Soondoos Rasheid Browning 21:43

Dhau

Kerry Reller 21:44

if I don't know if we have time for anything else. We probably did two episodes here.

Treating the Whole Person

Kerry Reller 21:47

What is one thing you want the patients to walk away with after listening to today's episode?

Soondoos Rasheid Browning 21:53

I think I want patients to understand that I'm coming to them with a more, like, relatable background. That I will talk to them medicine, but at the end of the day, I'm more so talking to them as a human. Because I myself go to the doctor as well, and if I've struggled with something or my kids have struggled with something, I do share stories with my patients. I've had patients straight up ask me, "Would you go on this medication?" And then sometimes I say, "Yes, I have actually," if I've started them on something. You have to give them that feeling of knowing that if you're willing to be someone who starts a medication, does the same treatment yourself, has a family member on it, because if you're not and you're not honest about it, also they'll be able to tell. But if you're not, Then why are they gonna do it? Why would you propose it to them just because it meets a guideline? You have to believe in what you're doing as a provider so that they can believe in you

Kerry Reller 22:56

We should be treating our patients like family,

Soondoos Rasheid Browning 22:58

yes

Kerry Reller 22:59

absolutely. Yeah, I like that. was that one thing you said at the beginning? If you don't Oh. Oh, no. Okay. word, the skin of wisdom into bodies. I really like that,

Soondoos Rasheid Browning 23:11

Okay, so skin is the window. Yeah it's the window to what's in the body, and that was one of the biggest things that, we covered during our discussion during the conference. So I wish I had the actual picture of the slide, but I even found it great because this is all hosted... the whole summit was hosted by Diversity in Dermatology, and they gathered everyone from all over the United States. So that's even way more cool that you're meeting all these other professionals who are taking their time to carry on in a panel. And what I especially loved about it is that they did not stand up there and lecture you. So three of them sat down and they had a panel with discussion, and it was like watching a live podcast, which was so cool because they had the slides up, but they were talking and bringing on their patient cases. So I really enjoyed that

Kerry Reller 24:07

Yeah, I do like patient cases at conferences. I think they're doing that a lot more, which is nice. But yeah, this was a great, conference with the collaborative care. It definitely, I think, emphasizes what I try to do in the practice, which is whole person care and, collaborating with other people as well, and in you guys, like my, my physician assistants and nurse practitioners. I think it's super important. I don't know everything. I have to look things up. You've come from somewhere else. You just came out of, l- school, so you clearly,

Soondoos Rasheid Browning 24:34

where everything's memorized

Kerry Reller 24:36

Yeah, exactly. So this has been a great conversation, and I hope all the listeners agree. And we'll bring you back on something else, I'm sure. But thank you

Soondoos Rasheid Browning 24:45

Absolutely.

Kerry Reller 24:46

us.

Soondoos Rasheid Browning 24:47

Maybe one year from now when you ask me what changes I would make, and then I'd probably sound like diarrhea at the mouth, and then you'll be like, "Wow, shut up."

Kerry Reller 24:56

I don't know. I think you could come back sooner than a year and have a lot more to share. But thank you so much for coming on today, and everybody stay tuned next week for next week's episode. Get Healthy Tampa Bay.

Soondoos Rasheid Browning 25:08

Bye. Thank you again, Dr. Reller

Kerry Reller 25:11

Bye

Soondoos Rasheid Browning 25:11

Thanks