Revising the Hypermobile EDS Criteria with Dr. Pradeep Chopra (Ep 154)

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Dr. Pradeep Chopra: [00:00:00] Doctors need to understand that these are guidelines. They should have the flexibility to have some leeway in making the diagnosis of EDS.

Dr. Linda Bluestein: Welcome back every bendy body to the Bendy Bodies Podcast with your host and founder, Dr. Linda Bluestein and the Hypermobility md. My guest, Dr. Pradeep Chopra, and I are tackling some of your hardest questions today. For example, how does Ehlers down low syndromes present differently in different sexes?

Are Hypermobile EDS and HSD actually different conditions and are the hypermobile EDS criteria appropriate and so much more? But let me first introduce Dr. Chopra to the few people who do not yet know who he is. Dr. Chopra is my friend, mentor, and the one who [00:01:00] convinced me to open an EDS medical practice in the first place.

He is world renowned for his incredible work in EDS and HSD pots, M-C-A-S-C-R-P-S, and Central Sensitization Disorders. Dr. Chopra is a Harvard trained board certified pain medicine specialist with over 25 years of experience. Jennifer Milner and I interviewed Dr. Choppa for episodes 70 through 73, which covered the impacts of EDS in a head to toe fashion.

Dr. Choppa has since joined me as a guest cohost for episode 77 with world renowned neurosurgeon, Dr. Paulo Boase and episode 1 52 with Dr. Theo Haes. I'm so excited because these are your really important questions and we're here to address them for you. Please submit your questions to bendy bodies podcast.com and subscribe to the bendy bulletin@hypermobilitymd.substack.com.

As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Stick around until the very end so you don't miss any of our special [00:02:00] hypermobility hacks. Here we go.

So I am here with Dr. Chopra and I'm so excited to get to chat with you today. 

Dr. Pradeep Chopra: Oh, my pleasure. I mean, I love being on bendy bodies, and thank you for inviting me again. Uh, not sure why you, thanks. 

Dr. Linda Bluestein: Of course I keep inviting you. Everybody loves, everybody loves hearing from you. And, and I wanted to share because, uh, when I was talking to Tessa before we started the recording, she was like, I didn't even know that you two knew each other outside of bendy bodies.

And I was like, so we have to tell that, that origination story, I feel like it would be, you know, really helpful. I want people to know how much you helped me When I first wrote my first article about pain in hypermobility disorders in 2017, and of course I was doing my literature search and everything, and I came across the article that you had written for the, uh, the big journal, the big genetics journal, and you were the lead author.

And so I [00:03:00] sent you an email and I said, you know, here's a draft of my article. What do you, what do you think? And you were so kind to write back. So we started having some, you know, email conversations, which then led to a phone conversation. And uh, I think that first time we talked, we maybe talked for like, I don't know, a few hours.

Does that sound right to you? 

Dr. Pradeep Chopra: Yes. All our conversations wind up being a few hours. I've been teaching medicine for many, many, many years and, and I can differentiate between a good student and a not so good student. 

Hmm. 

Because with a good student, every teacher wants to put that extra effort. 

Effort. 

And, you know, we're not so good students.

We like why waste time? And one of the things I liked about you was that you are very inquisitive. Actually. You still are. I still get this occasional email. I remember you sending me an email on LDN and you're, you're [00:04:00] constantly learning and evolving and I.

And then we bumped into conferences and I was so impressed with your enthusiasm to learn. Oh, it was amazing. And then you also went on a slightly different track with helping dancers and all, and I was like, it really, I was proud of you. And this is one of the things that teachers like is to see an enthusiastic student.

So it did, it wasn't my, it was a great, it was, it was a pleasure teaching you because I knew you would, you would do well with helping other people. 

Dr. Linda Bluestein: Oh, I really appreciate that, and you were so generous with your time and I, I felt like I kind of followed you around to these different conferences that you were speaking at and then would pick your brain and, and I don't know how well you remember this conversation, and, and I'm curious if you remember it.

Like, I remember it, it would've been in the fall of 2017, and we were having a conversation about, you [00:05:00] know, whether or not I was gonna open a practice. And you kept telling me, I think you need to do it. Yes. I think you need to do it. Yeah. And, and then you were telling me, you're, you're ready. And it, and I felt like it was, you know, before you have children, you're like, I'm not ready.

I'm not ready. Uh, 

Dr. Pradeep Chopra: yes, I remember that conversation because one of my things is that I want more people out there, uh, treating a DS or rather a DS specialists. 

Mm-hmm. 

And you know, it's because the, the more people there are obviously more people get help. And one of the things about you was that you, uh, you were in the Midwest, you were in Wisconsin.

And I said, listen, this, you are the best person to do it. You do EDS better than most people do 'cause you live it. And and we were at that point in 2017, we were desperate for, uh, more people out there. Now we have some more people, but we really need a lot of people to understand [00:06:00] this whole complexity of EDS, mast cell pots and all that goes along with it.

So you were ready then? 

Dr. Linda Bluestein: Yeah. Yeah. You, you said, you said you're ready. And I was like, okay. Well, I guess it's one of those things where you just have to jump in with both feet and, but so, so I, anyway, I, I was so, so excited to tell that story because I think a lot of people may not realize that we've. You know, met in person multiple times and, and I wanted everyone to know how much you helped me.

And I, I'm forever grateful. And yes, I do still send you emails from time to time to, to pick your brain on different, uh, various topics. And of course, you've been on bendy bodies quite a few times now, both as a guest and as a guest co-host. And I've enjoyed every single one of those conversations and can't wait to see where this leads.

So it's, who knows, who knows what we're gonna end up talking about. I'm sure it's gonna be, it's gonna be fun for everybody. 

Dr. Pradeep Chopra: This is going to be an interesting episode because, uh, there are a few things that I like to discuss, [00:07:00] uh, which, which I think are burning topics in EDS. 

Dr. Linda Bluestein: Okay. Do you wanna start with your burning topics?

'cause we absolutely can. 

Dr. Pradeep Chopra: No, you are the one who sent me that question. Okay. 

Dr. Linda Bluestein: Okay. We'll, we'll start with some of my burning questions and then we can move on to some of your burning questions. Okay. Sound like a plan. Okay. So the, the first question comes from one of our followers that, A, who asked why is the Hypermobile EDS diagnostic criteria the same for males and females, when boys often present differently and tend to score, score lower on the BITTON score.

My brother only scores the three or four. So doctors hesitate to diagnose him even though he has frequent dislocations, Maren features, gastrointestinal issues, migraines that cause 'em to vomit, chronic pain and fatigue. It's frustrating to see how many men and boys are dismissed because they don't meet one specific metric.

And I, and I wanted to talk about this too, because I do get messages from, uh, men, boys, males [00:08:00] who feel like they are, um, ignored because obviously we see so many more females than males. Right. So I thought it would be important to talk about how, how this does present differently in men and boys or what you're seeing in your clinical practice.

And, you know, should, should we have a different criteria for the different 

Dr. Pradeep Chopra: sexes? Yes. So the, so the 

2017, um, hypermobile EDS criteria, diagnostic criteria has a lot of flaws, 

a lot, um, and, uh, a lot of doctors who have not 

adapted to it and they don't accept it. And oftentimes when patients come in, this is the first question I ask.

Uh, who diagnosed you with EDS and did they use the 2017 criteria? I use it because it's a standardized [00:09:00] criteria, so I don't want anyone else coming back and saying, Hey, you didn't use the 2017 diagnostic criteria. Uh, but there are many, many flaws in it, and this is one of the biggest flaws is that it does not differentiate between men and males and females.

It's also. Skewed towards adult females and not as much for younger girls. And we'll get to that later on. 

Mm-hmm. 

Um, so males, it is well known that the Biden score, which the, which the 2017 criteria, uh, depends on so heavily, and most doctors do depend on so heavily. Uh, is it, it evaluates a generalized joint hypermobility, but it has been shown that males score lower than females on average in hyper in on the Biden score.

Mm-hmm. 

Itself, just by, you [00:10:00] know, of the three components on the Biden score, males score lower compared to females in general. 

Right. 

And that, I mean, there are reasons for that. And we like, you know. The muscle structure in, in boys is a little more tougher than in girls. They don't go through the hormonal changes that girls go through.

But so the criteria in the, in the total ID criteria, the 2017 criteria, they have differentiated by age groups, but they never differentiated by male and females. Right. And so right off the bat, the Biden score doesn't apply. It's not fair to males, it's not fair to boys. And again, joint hypermobility decreases, naturally decreases with age.

Uh, but in boys, it actually decreases more as they enter into [00:11:00] adolescence and adulthood. Joint hypermobility decreases in boys. And then there are other things like ethnic backgrounds. Mm-hmm. Uh, muscle bulk, athletic conditioning. Can also reduce joint hypermobility, obscuring the actual underlying pathology.

And so the Biden cutoff for boys and girls should be different. Uh, and you know, I'll come to a solution at the end of all this, but first I need to just clarify that I don't want people to worry that Okay. I mean, doctors have to understand that they have to, we're not, we're not all Toyota Corollas that I, I can, in a Toyota Corolla, I can put a, a mechanic can put a hand in his, close his eyes and put a hand in there and touch a nut and say exactly what that nut is.

Mm-hmm. 

What that nut does. We're all different in many ways, many, many, many [00:12:00] ways. And this is one of the ways, and you know, what's disappointing is that this 2017 criteria was established in about eight years ago. And. No effort has been made to fix it. 

That's the problem. Uh, it was 

hoped that, you know, in, in all conditions, in every disease, and I can take one, for example, CRPS complex, AL Pain syndrome.

Mm-hmm. Which is an extremely painful condition. They came out with a criteria, you know, a while back and it was called the Budapest criteria. I think it's about 20, 30 years old. So they, a bunch of people got together and they came, they sat, they went to Budapest, they came up with the criteria. But a criteria is not established un it is not accepted unless you prove that it is correct.

So they eventually did studies on it, and a few years later they produced another paper, the same group, [00:13:00] and they said, yes, we were right. The criteria that we put out and, uh, during, in, when we met in Budapest is, is valid. Not only that, they meet, they met again recently, a couple of years ago in Spain, and it's called the Valencia Consensus.

And in that they again said, yes, it is still true. The Budapest criteria, with a few tweaks, they clarified a few things that were causing confusion, but they said that it's still valid and that's how it should be. Unfortunately, with this 2017 criteria, eight years later, we are still where we started with.

Uh, so yes, sex does make a difference. Uh, boys are tend to have lower Biden scores and that has been shown again and again. 

Dr. Linda Bluestein: So, uh, totally agree with you about the, the difficulties with the 2017 criteria, starting with the bite and score. And then there's like the little side note about the five point questionnaire, [00:14:00] which I think is a great tool by the way.

And the five point questionnaire, of course, is really important for historical joint hypermobility. So we have the same problem as you were pointing out in older. People because their joint hypermobility is going to go down with age. So they might score low on the biting score, but they still meet all the other criteria.

I had a patient recently who had a BITTON score of one out of nine, yet she had six of the, you know, 12 criteria in the middle. And I do use the 2017 criteria also. Um, and it's important to note that for these two examples that we're talking about, for both hypermobile EDS and CRPS, the challenge is because these don't have a really good, reliable biomarker.

Or in the case of hypermobile EDS, no biomarker. So we're using clinical criteria, right? So that's the, right, that's the challenge. And, and so getting a group together to decide on clinical criteria is challenging enough, but you raise an excellent point that it should then be studied. Are those clinical criteria.[00:15:00] 

Do they seem to be appropriate or not? And in the case of, for example, CRPS, do you know what the timeframe was like? You know, you're pointing out that the Budapest criteria came out, you know, quite a long time ago. Do you know like in that eight year time span, if it would be, you know, normal that there would be a number of studies conducted?

'cause I know that there is the project, you know, the road to 2026 where, you know, they're looking at revising the 2017 criteria and they did publish in 2023 an update for pediatric patients to the 2017 criteria. But yeah, we know there's a lot more work that needs to be done. 

Dr. Pradeep Chopra: The update. So on the CRPS criteria, they, uh, sort of clarifying the Budapest criteria.

I think it was only a few years. Uh, I think it was at four or five years. And that's the average time it takes to do a randomized control study. 

Mm-hmm. 

And they did this study and, and within a few years they came out and they said, yeah, it does meet the criteria and then reconfirmed it a couple of years ago.[00:16:00] 

And that started with almost all conditions where they have said that, you know, hey, uh, let's say pick up rheumatoid arthritis, uh, you know, rheumatoid arthritis, this is what we think, um, is the diagnostic criteria for rheumatoid arthritis. Uh, but just because we said it doesn't mean that it's written in stone, right?

So we've gotta do studies to prove that this criteria does, uh, match up or add it, or a tweak to it. Tweak it. Mm-hmm. You know, add or take away things. And that's how, so we're hoping that the 2026 we have, uh, additional information. I don't have any information on that yet, so hopefully we'll have something there.

Uh, 

one of the things about, so the question that you had asked was that, you know, um, his brother, um, scores very low on the bite and score. 

Mm-hmm. 

He gets only three or [00:17:00] four. And so the doctors don't wanna diagnose him with, um, ed Hypermobile EDS, but they also have to remember that the, that the 2017 criteria does not weigh heavily on the bite and score.

Uh, doctors have to look at these patients and say, okay, do you have all the other features? And like this, his brother has frequent dislocations, maronite features, GI issues, migraines, you know, chronic pain, fatigue, which are all what you find in patients with hypermobile IDs. So you take that into consideration, okay, this is a male, his Biden score is likely to be low, but has a lot of the other features, which again, going back to my Toyota Corolla analogy, just because you don't have that little sticker saying on the back Corolla doesn't mean that it's not a Corolla.

It has all the features of a [00:18:00] Corolla, so it must be a Corolla. And that's, uh, that's where, that's where clinical science and medicine comes into place to look at the whole patient and understand, okay, these are guidelines. They're not written in stone that you have to, it's not the law. These are to guide patients understand, and that's what they're called guidelines.

But you have that flexibility to understand, yeah, if there's something else that explains this condition, the symptoms that he has, sure, go ahead with it. But if you don't have any other diagnosis, you can't, it's unfair to send this patient home saying, well, you scored only three of those, uh, ten three or 10 on the, on the 9 0 9 or the patents score.

Therefore you don't meet the criteria. I don't know what's going on with you. That would be very unfair. 

Dr. Linda Bluestein: Mm-hmm. 

Dr. Pradeep Chopra: So you could look at the patient as a whole. That's the one part. 

Dr. Linda Bluestein: Yeah, no, I, I totally agree about looking at the patient a as a whole. And I think [00:19:00] another frustration that a lot of patients have totally understandably, is that the comorbidities are not part of the 2017 criteria.

Now they are kind of part of the 2023 criteria for, uh, you know, pediatric patients. You know, there's like these five questions that you ask, you know, is generalized joint hypermobility, pre present musculoskeletal complications? Are there comorbidities, skin and tissue involvement? And then have other conditions been ruled out?

So for that 2023 pediatric criteria, they do ask about comorbidities. But for the 2017 criteria, comorbidities are not included. So if you have pots, if you have mast cell activation syndrome, like if you're following the 2017 criteria, that doesn't give you extra points, if you will. Correct, 

Dr. Pradeep Chopra: correct. Yeah.

And so, you know, again, going back to the 2017 

criteria. Uh, and this happened with me recently. They, one of the [00:20:00] criteria that they have in the 2017 criteria is recurrent joint dislocations. 

Mm-hmm. 

And, but it says nothing about subluxations. And recently I came across a patient, I saw a patient with EDS, you know, everything was there.

Uh, went and saw a neurologist who actually was one of the authors of the 2017 criteria. And he said, well, you don't have, um, EDS, because you don't have recurrent dislocations. You have subluxations. 

Dr. Linda Bluestein: Oh my gosh. You're kidding. 

Dr. Pradeep Chopra: And I was horrified because dislocations, you know, in the United States, we call them dislocations, but they're actually, they're actually.

So you have ations where the joint dislocates, that's called ations, and if it, if it look dislocates and it comes back at place or what I call is [00:21:00] a slippery joint. Mm-hmm. That's a Subluxation. What's the difference? The patient is still suffering. Right? He still dislocating the joint. Even if he dislocates it for two seconds or two hours, he's dislocating the, they're dislocating their joints and he kind of reject.

I mean, that was like his big deal thing that, oh, it's, Dr. Chopra did not, uh, documented subluxations, but did not document dislocations. And honestly, most patients with EDS don't have dislocations. They have subluxations. 

Dr. Linda Bluestein: Mm-hmm. Right. Well, and and isn't it true that you can't tell the difference unless you have an x-ray?

I mean, can you tell that you, you can tell if you totally dislocated a joint and it's like out, out, and you have to go to the hospital and have 'em put it back, put it back in. But otherwise, isn't it true, especially if a, if a joint dislocates and then comes back spontaneously on a, a regular basis? I, I like the idea, I [00:22:00] love what you just said about the ations rather than making this like, you know, maybe artificial distinction between the two, because most of the time you don't have an x-ray.

Right. Looking at that. Yeah, 

Dr. Pradeep Chopra: you're right. You're absolutely right. So, so this, so in case of boys, we can't, we can't leave leave the boys alone. One of the things, the other thing in boys is that they are, their presentation is, like I said, is that basic structure is different. Their muscle structure is tougher and their ligaments are a little tougher.

It's just by, it's just by nature of their DNA. They have this phenotype where their. Muscles are, muscles are more, how do I put it? Coarse. 

Mm-hmm. 

And they're not as soft and flexible and so their hypermobility would be a different, very different criteria. But then you look at other things, you know, [00:23:00] a lot of the patients that I see that come in with hypermobile EDS, a lot of, a majority of their problem is not the EDS portion of it.

It's either the parts part of it or the mass cell part of it, or the CCI part of it. And so I tell them that, I said, listen, don't worry. We are here to fix whatever is broken. And whether it's, or whether you call, its a RAF suffering, your quality of life is not good. Otherwise you would be coming in my office seeing me.

Right? You would be out there, uh, you know, in school or something, studying or having fun. And so whatever it is that is stopping you from functioning, that's my, that's our job to fix. 

Mm-hmm. 

And that, what's I wanna talk to you about was what makes you Dr. Bluestein special in treating EDS? [00:24:00] I was asked this question, that's why I've been asked this question many times.

Like, Hey, you are an anesthesiologist. You know, how come you are, you're, you're treating all these things. You're, you're not a cardiac, you're not a cardiologist, you're not a immunologist, or you're not a, you know, a orthopedic surgeon. How come you can't treat all this? And that's when I realized that our education is purely based on studying each and every one of these conditions.

Anesthesiologists have to know cardiology. They have to know the pulmonology, GI, and cardiac stuff and everything. Not only that, as an anesthesiologist, you can have a patient with a heart disease come in for an appendix, and now you've got to batch both of them. So the patient might be septic and has a heart disease.

It doesn't get more [00:25:00] complex than that, and we handle those. So we know our anatomy, we know our physiology, we know our medicine. And this is the only branch in medicine that has to be an expert at all these branches. 

Dr. Linda Bluestein: Mm, yeah. Good point. 

Dr. Pradeep Chopra: See, you didn't even know how awesome you are, so you gotta change your si.

You gotta change your sign plate outside specialist, and then you go down. Anesthesia, ophthalmology, cardiology. Put all of those down there. 

Dr. Linda Bluestein: Yeah, no, those are good points. 'cause our training is very different than what I think most people realize. I don't think most people realize that, like you said, we have to know about all of those things because we have to know how they impact, you know, the drugs that we're gonna give and the positioning that we're gonna be doing and, and all of the other aspects of their care.

So, and oh, and I forgot to mention the article that you and I wrote, which was also, which was also fun. Yes, [00:26:00] yes. 

Dr. Pradeep Chopra: The article at Dr. Blue Street's, doctor is about perioperative care and anesthesia. And we talked about what are the precautions you have to a patient going into a surgery, what anesthesiologists need to know.

And, uh, 

since you that subject, I need to bring one, one, uh, PS a. 

The PSA is that one of the things that I've been seeing is that patients who are going in for, uh, tooth surgery, like, uh, wisdom tooth extraction or nose surgery, or even general anesthesia, uh, even though they tell their anesthesiologist that I have EDS, they still hyperextend their neck.

Mm-hmm. And then they end up with CI. 

Mm-hmm. 

Yeah. And that has me really worried. And so I did write to Dr. Boes, um, who's the neurosurgeon, [00:27:00] and I said, are you seeing this? And he said, we see this all the time. So we're in the process of, uh, writing up a case report of eight patients that we saw who had some sort of a facial surgery or dental extraction, ended up with CCI.

And we had written this in our paper back when we published it in the perioperative. Care for patients with EDS undergoing anesthesia. We had mentioned this carefully, like you keep the head neutral, you've do fiber optic intubation. We said that, but most, but in a dental office, they don't pay attention to.

Dr. Linda Bluestein: Well, I would say probably in a dental office. And unfortunately in other practices, I, I know I don't know about you, but I write a lot of letters for patients and clients if they're going to be having surgery. And fortunately it seems like a lot of the time they are well received. But if somebody doesn't have something like that and they just say, oh, I have EDS, so please be extra careful with my neck.

[00:28:00] I feel like that's often not taken seriously. And speaking of the paper that we published, and I believe it was published in 2020, um, 2019 or 2020, something like that, and we'll link that in the show notes. Of course. But I remember when, when we first started writing that I had this, you know, idealistic, I'm thinking, oh my gosh, this is gonna be in the New England Journal.

This is gonna be, you know, in jama this is like, so I know this is how naive I was. I'm think I'm thinking because I'm thinking to myself, everyone needs to know this. And I had been going to anesthesia conferences for, you know, a couple of decades, and I knew that there were all kinds of lectures on positioning, but I never heard any mention of connective tissue disorders.

So I'm thinking to myself, anesthesiologist, every single anesthesiologist needs to understand the implications of positioning a patient under anesthesia or managing their airway, like you said, you know, extending the, the, uh, the neck, et cetera. And so I'm thinking this is gonna just be like, this is gonna be [00:29:00] big, right?

And then, and then you were submitting it to all these different journals and you had to keep telling me, you know, we gotta keep trying. We gotta keep trying. And, and I was shocked because. Tell me again what the response was that you were getting, uh, when you, so 

Dr. Pradeep Chopra: there was one response, uh, that was just mind blowing.

So there's a very famous journal called Anesthesiology. Mm-hmm. It's like the Bible of anesthesia. Everybody has to, everybody reads it. And I wrote to the editor and I said, listen, um, I have this article that we've written on, you know, EDS and patients going through surgery at EDS, and the response was, oh, we don't, our readers don't get that many patients with EDS.

Uh, if you want to write an article on pain in EDS, uh, sure, go ahead. But our, our anesthesiologists don't see many patients with EDS. And I'm like, first number [00:30:00] one, you are wrong right there. Right. Okay. Right. Because EDS patients do go through a lot of surgeries. Right. The second thing is that. Okay. So they don't see many EDS, but do they see at least a hundred?

Right? So you mean you can go ahead and damage their necks Right. At these 400 patients that you've just seen? Right. Instead of warning them about it. Right. And, and a few years later, after we had written that article and it was published, I did write to him a follow up and I told him, look, we have a case series of eight patients that which you thought was not relevant for your journal, has turned out to be extremely relevant.

One patient got para had actually developed, uh, AIA from that. Oh no. That was what motivated me to write, to have. Mm-hmm. So on that question, uh, for the [00:31:00] dentists, what, what I tell patients now is that even though I write it in my notes, uh, I don't think they read my notes. Uh. The dentist don't read my notes.

Right. Uh, mainly because my notes are 17 pages long. Right, right, right. Mine too. But so, but what I do tell them, I tell patients is take your neck collar with you. If you don't have one, buy your neck collar, a hard neck brace and put it on. 

Yeah, 

great idea. 'cause now they won't forget. Right. And even they try to extend, hyper extend your neck.

They can't because you are in the optimal position. 

Mm-hmm. 

And that's what I tell them. I said, don't try it. Explaining to them they won't remember. They get busy with their digging around for that hurt molar, which is back in there. You know the wisdom tooth is right back in there. And 

so put your collar on [00:32:00] 

as medicine doesn't work.

So now you're screaming because. Lido didn't work and you're like, ah, that hurts. And then the dentist is getting frustrated because he can't get in there because you are screaming in pain. And so he takes your neck right way back, opens your mouth back, and then you end up with CCI. 

Dr. Linda Bluestein: Yeah. Yeah. That, that's a great suggestion because you're right, it doesn't matter if we try to make it short, there's gonna be people.

So that's 

Dr. Pradeep Chopra: hack by the way. Yeah. 

Dr. Linda Bluestein: Yes. That's a great hack. You snuck in the hack. 

Dr. Pradeep Chopra: Yes, yes. I love it. So hack is always carry your neck brace if you're ever getting anesthesia, dental work, doesn't matter how small it is, uh, or anything with the nose. One of the cases in that eight, right, in those eight cases is a patient who had turbinate surgery, nose surgery.

Dr. Linda Bluestein: Yeah. 'cause for nose surgery also. You're position like that. Yeah. Yeah. Or Or thyroid. Or parathyroid. Right? A thyroid. 

Dr. Pradeep Chopra: Oh, [00:33:00] that's right. Yeah. Yeah. That's a good word. So we are gonna hack, we are gonna hack right in the first half hour of our Love it. Love it. There you go. Perfect brace for everyone. If you're wondering which neck brace, uh, it's, the Miami J collar would be the best one.

Uh, it works otherwise also, and if you wanna take it, uh, to the dentist or wherever, take it with you. Even if you're going for surgery, uh, if it's a major surgery, tell them that you need to put the brace on. 

Mm-hmm. 

Insist on that when you have your pre-op testing. 

Dr. Linda Bluestein: Yeah. I think that's a cool, and if you get a great hack and 

Dr. Pradeep Chopra: Yeah.

And if they get a pushback, if you get a pushback saying, oh, but you don't have instability, tell them that I don't want instability. That's the reason why I'm wearing this brace. 

Mm-hmm. Mm-hmm. 

There are too many cases. And I talked to Dr. Bois about this. I said like, how many are you saying? He says a lot.

So I was kind of horrified with that. [00:34:00] We just geared CCI. Yeah. And back. 

Dr. Linda Bluestein: Yeah. And like you said, I mean, even one case is, is too many. And I'm glad you pointed out about the journal anesthesiology because yeah, that's what everyone reads that that's the journal. So, so we're gonna take a quick break and when we come back, I wanna talk a little bit more about this hack because I think this is really important and I have a follow-up question related to that.

But we're gonna take a quick break and we will talk about that a little more when we come back.

This episode of the Bendy Bodies podcast is brought to you by EDS guardians, paying it forward in the Ehlers Danlos syndromes community patient to patient for the common good. I am proud to serve on the inaugural board of directors for EDS Guardians, a small charity with a big mission and a big heart now seeking donors, volunteers, and partners, patient advocacy and support programs available now.

Travel grants launching in 2025. Learn more shop for a cause at their swag store and join the revolution at EDS guardians.org. [00:35:00] Thank you so much for listening to Bendy Bodies. We really appreciate your support. It really helps the podcast when you like, subscribe and comment on YouTube and follow rate and review on all audio platforms.

This helps us reach so many more people and spread the information to everyone. Thank you so much again, and enjoy the rest of the episode.

Okay. We're back with Dr. Chopra and we were just talking about this paper that we published in 20, late 2019, early 2020, something like that. And it was about perioperative considerations in people with EDS and how I was thinking this was gonna be in some massive journal and, and we got it published and it was great.

But I I, I definitely did not have my finger on the pulse on that one. And you were giving us this great hack about wearing a neck collar. And what I wanted to ask is, I. Do you think that anyone who has an EDS diagnosis should do that? And then my follow-up question to that is, what if you don't have an [00:36:00] EDS diagnosis, but you have an HSD diagnosis, but you don't have any known neck problems?

Do you still do it? 

Dr. Pradeep Chopra: Alright, let's talk about that. Okay. 

Um, if you have an EDS diagnosis, buy a neck collar, whether you have CCI or you don't have CCI because if you don't have CCI, you don't want CCI. 

Mm-hmm. 

So it's like a airbag. You pay for an airbag in the car, whether you want it or not, whether you probably, hopefully never use it.

So the same thing if you're getting any kind of anesthesia, any kind of nose surgery, eye surgery, anything to do with, uh, above your neck, your head, including, uh. What I call is both payments for dentists is taking out the wisdom teeth. I don't know why they take out the wisdom teeth in everybody. Every patient that I've asked, [00:37:00] why did they take out your wisdom teeth?

And they're like, I don't know. And 

so I think they do it for both payments and so, so take it's, it's, it's like a safety 

belt. Take your, get a neck collar. It's not worth it because trust me, it's not worth getting CCI. 

Mm-hmm. Mm-hmm. 

You don't want the surgeon and his knife and with his screws and bolts in there.

No. Uh, what was your second? Oh, HSD and E. Yeah, we, oh, that's the one I wanna talk about. The HSD and the whole thing about HSD and, and the, okay, I'm just gonna hold off on the swear words, but can you use swear words on this? Is the FAA gonna get after 

Dr. Linda Bluestein: us? No, I think you can use swear words. No, I don't swear.

We can always cut, we can always beep them out if we have to. 

Dr. Pradeep Chopra: No, no, no. I, I don't swear. I'm sorry about that. 

Dr. Linda Bluestein: But 

Dr. Pradeep Chopra: for all [00:38:00] practical purposes, we'll get into this discussion of GDS and HST date on, but for practical purposes, if you've ever been diagnosed with HSD, assume that you have to do the same precautions as EDS.

Mm-hmm. 

Assume the same thing 

because you don't, it's not worth the risk. Right. 

It's really not worth the risk if you, if you think you have hypermobility but have never been diagnosed with it, and your entire family for generations have got all the EDS stuff and you are the only one who has not been diagnosed, but you feel like you, you can do all those funny tricks, uh, with the color.

Dr. Linda Bluestein: Mm-hmm. 

Dr. Pradeep Chopra: You can go along with that. 

Dr. Linda Bluestein: Yeah, there's, there's probably no downside really to, uh, to, to doing that. And especially nowadays with the GlideScope and other methods of, uh, video laryngoscopy, there's more options. You know, you don't have to do an awake fiber optic [00:39:00] intubations like, you know, like that was the only option a number of years ago.

So I think that's really good advice. And I do wanna talk in a little bit about hypermobile EDS and HSD and are we drawing a, a line in the sand artificially? Do we think that they actually are separate conditions, or do we think that they're actually one and the same? But I, but I first want to ask you what you think about the, we, we talked a little bit about the 2017 Hypermobile EDS criteria.

What do you think if you, if you could wave a magic wand and you could just like, pick the clinical criteria for hypermobile EDS, what would you include and what would you drop off? Or how, how would you change it? 

Dr. Pradeep Chopra: So do you want me to, um, look through the 2017 criteria and talk about, let's talk about, we're gonna do it together.

Okay. Okay. What should be there and what shouldn't be there. Okay. [00:40:00] Um, so the cri, so they've 

divided it into three, three, the three criteria to it, right? Right. The first one is the standard Biden score. And, you know, the Biden score has been around for ages and it has been well studied and everybody knows it, and it's fine to have it in there.

I, I think it's pretty good. Uh, you know, some people have complained that it only looks at the small joints, doesn't look at the big joints, et cetera, but it is what it don't doing clinically. Nine, there are nine things, takes nine seconds. 

Dr. Linda Bluestein: Yeah, it's very, very quick. What do you do? Have you used the lower limb assessment score ever?

Because that's, you know, that's 12 different tests that you can do on each side. Now, mostly I see physical therapists doing this, but for a population like dancers and other athletes who tend to get injured in lower extremities, I think that that's also a good scoring tool. And then there's the Tokyo and, I mean, there's like a [00:41:00] million different scoring systems, right?

But the Biden is, like you said, it, it's so quick and easy to do, it's easy to memorize. Um, and it's, and it has been studied a lot. Yeah. 

Dr. Pradeep Chopra: Yeah. If somebody were to ask me, like, what would you add into the Biden score? I would say knees as one of the things. So, you know, make it a round figure and make it 10 things.

And look at the knee if there's hyperextension of the knees in there. So good. 

Dr. Linda Bluestein: Yeah. Well, hyperextension of the knees is in the Bit Score. 

Dr. Pradeep Chopra: Oh, I'm sorry. It's, sorry. 

Dr. Linda Bluestein: Yeah. Yeah. I, I think, I think if we were to add something, what do you think about adding the shoulders? 

Dr. Pradeep Chopra: Oh yeah, 

Dr. Linda Bluestein: I think shoulders would be a good thing to add.

Dr. Pradeep Chopra: So on the upper extremities we have the pinky finger and we have the thumb. 

Mm-hmm. 

And then we have the elbow, and then you can add the shoulder in there. And the lower extremity, the hip is a difficult one to look for. Hyperextension. 

Mm-hmm. 

It's difficult. So the knee is fine. And of course the back, they've looked at the [00:42:00] spine, which is fine.

Dr. Linda Bluestein: Maybe ankles. 

Dr. Pradeep Chopra: Actually ular. Hypermobility is probably the most common hypermobility you ever see, and also the most harmful. 

Mm-hmm. So, yes, 

ankles would be a good one to look at. Okay. But here's the thing, going back to our male female thing, you know, if you find that, okay, this, this boy seems to have hypermobile EDS, but doesn't quite meet the biting criteria, then add some of these things like the ankles or look at, you know, like you said, look at the shoulder.

Because these are guidelines, as I kept keep saying they're not, it's not the law. Mm-hmm. These are guidelines. Mm-hmm. 

Um, the problem is that in the, in criteria two where they've asked about some of the things, I'm just gonna skip off, skip some of the, 

the one that is, [00:43:00] uh, very, uh, 

aligned towards women, uh, older women.

So they have pelvic floor rectal rine prolapse, uh, in children. I don't know about you, but I've never seen a recal prolapse or a uterine prolapse in a child. 

Dr. Linda Bluestein: No. Never in a child. 

Dr. Pradeep Chopra: I've never seen that or heard a no pers woman. Yeah. I've never seen a uterine prolapse in men. And if I do, I, I let you.

For that matter. I've never seen a prolapse, even a rectal prolapse in men. 

Hmm. 

Interesting. I haven't I He hemorrhoids. Yes. Hemorrhoids, yes. But that hemorrhoids is common. You can't base your diagnosis of EDS on that. Right? Yeah, definitely not. And you know, ly Paris women that, that's women that have never been pregnant having rine prolapse.

So now you are going into a older age group. 

Mm-hmm. [00:44:00] 

So you don't see U Trend Pro. I mean, the realistic thing is that we, you and I see lots of EDS patients lots, and we have never seen rectal prolapse or U Trend prolapse in children. Right. But are there people who are seeing them? I don't know. Why would they put them in the guidelines then?

Mm-hmm. 

And so this is skewed more towards older women than younger women. And then Nali Paris woman, that is really. Boxing it into a very small set of women who have never been pregnant and are having er, recal prolapse. So that, that criteria is kind of strange, weird. But I'm, I don't know. There must have been studies that they've looked at and they put it in there.

But I'm hoping in the new guidelines, they'll take that off or modify it 

Dr. Linda Bluestein: or, or modify it. Right. Because what if you've had pregnancies but you have [00:45:00] horrible, I mean, there's also degrees of prolapse too, right? I mean, so you could have mild prolapse for is gonna be different than severe prolapse. And I think that's the other problem with a lot of these criteria.

So if we even look at the first one, unusually soft or velvety skin, that's so subjective. I, I feel like, so that's very subjective. Yeah. That's the other challenging thing. Yeah. 

Dr. Pradeep Chopra: Very subjective. Um, you know, a Africa for some reason, I mean, African American women have generally very soft, velvety skin.

That's just my observation. 

Mm-hmm. 

Uh, even without EDS, they have soft, velvety skin. So hard to say that, but it's only one of the five, which is okay. It's not a bad one. But this pelvic floor rectal or uterine prolapse is really, uh, and in Nly Paris woman, that means women who are never in pregnant. I mean, if I would change the criteria to say after say one or two pregnancies, [00:46:00] and if you see rectal prolapse or uterine prolapse, then it's a big deal thing.

Mm-hmm. 

Um, dental crowding is fine. Erect magically, you know, the rest is fine. In feature B they've said, they've talked about, um, positive family history. This is gonna take years to happen because, you know, we have, this was, this criteria was established in 2017 and it took a couple of years for it to be accepted.

People to start using it. You know, personally, I think I started using it in 2019 when I was a little more comfortable with it. Uh, but if somebody comes and says My grandmother was hypermobile, but I I, but she was probably never, they never ran the 2017 criteria on her. Right. Right. Yeah. So this feature B doesn't up, yeah.

A positive family history of joint hypermobility, first degree relative, then that makes sense. 

Mm-hmm. 

Doesn't have to [00:47:00] be H EDS. 

Mm-hmm. 

And then in feature C, uh, they talked about, you know, uh, recurrent joint dislocations is recurrent joint dislocations. Another way of saying subluxations. 

Dr. Linda Bluestein: Well, it does say recurrent joint dislocations or frank joint instability in the absence of trauma.

And it does say for feature C must have at least one. And I don't know about you, but like all of my patients meet the middle when the chronic widespread pain for more than equal to, or uh, more than three months. And then the first one, musculoskeletal pain in two or more limbs recurring daily for at least three months.

And I think it, I I should also point out that you and I, so I just wanna point out that you and I have been, you especially have been seeing these patients. You, you, you were seeing these patients long before this criteria came out. Right? So Right. For for, it's, it's kind of funny, you and I are both like, I'm, at least I'm looking at the criteria right now on my computer.

I have it pulled up here. And we're having this conversation as two people who [00:48:00] specialize in this space. And, and there's a lot to talk about on each of these individual things. So how can we possibly expect a family practice doctor? Timbuktu to look at this sheet and be able to make a diagnosis reliably.

Um, you know, I, I just, I, I just have to chuckle at that because it's, it's a lot, it's a lot for somebody to try to take in and understand, even if they have the, um, desire to help these patients and evaluate them for hypermobile EDS. Exactly. So 

Dr. Pradeep Chopra: my, um, I mean this is, so, this, these 

criteria are so restrictive.

They, it has, it has to be a little loser in making these diagnosis. And also this, these are doctors need to understand that these are guidelines. 

Mm-hmm. 

They should have the flexibility to, you know, have some [00:49:00] leeway in making the diagnosis of EDS. Um, and in features CI actually see all three of them. Not so much as dislocations.

I don't see dislocations. I see subluxations, which can be frank joint instability. But like I said, one of the authors on the same 2017 criteria had an objection to that. 

Mm-hmm. 

And I didn't realize it. And I went and went back and I looked at the criteria. I said, oh yeah, they don't have subluxations in there.

They only have dislocations. 

Mm-hmm. 

And his objection was that, uh, this patient did not have sub dislocations. It had, he had only had subluxations, therefore did not meet the criteria. 

Dr. Linda Bluestein: Yeah. So they thought that they should not have the diagnosis of hypermobile EDS because they did not have. Actual dislocations, which, you know, again, if you look at it, it does say, or frank joint instability.

So I, I also, you know, I your point about guidelines, we have guidelines all over the place in [00:50:00] medicine, right? We have tons and tons of guidelines. But I was also curious, now that you pointed that out, I was curious to look at the very top, and it says, diagnostic criteria for hypermobile EDS. And it says, this diagnostic checklist is for doctors across all disciplines to be able to diagnose EDS.

And it says the di, the clinical diagnosis of hypermobile EDS needs the simultaneous presence of all criteria one, two, and three. It does not say, these are guidelines. Follow your clinical judgment. Am I, am I right or 

Dr. Pradeep Chopra: am 

Dr. Linda Bluestein: I 

Dr. Pradeep Chopra: wrong? Yeah. They should change that to guidelines. That should be guidelines. But here's the thing, it's fine to sit down and, you know, sit down together.

And a lot of smart people, it's important. People sat out together. Yeah. It's 

Dr. Linda Bluestein: important. And 

Dr. Pradeep Chopra: they, they, I think it was a huge step when they came out with this. But before this, it was the Wild West, right? Everybody was using their own criteria. 

Mm-hmm. And 

unfortunately it was not for made firm. So a few [00:51:00] years went by and there was no studies to confirm that this diagnostic criteria was true and correct in every form.

Mm-hmm. Or, you know, there was, and a lot of the, uh, like I have a local, not local, but in, in my region, I have a geneticist, um, who sees a lot of EDS patients, but will not use the 2017 criteria. 

Dr. Linda Bluestein: Oh, interesting. 

Dr. Pradeep Chopra: He doesn't use it. And a lot of doctors have said, a lot of the geneticists have said that they won't use this criteria because, I dunno, I've never asked them why, but I'm assuming it's because it's not too restrictive.

It is. And plus there's like in over here, they want, there are two points on, um, echocardiogram, mital prolapse or dietician. Right? So what do you want me to do? Hold off on diagnosing you till you go and [00:52:00] get an echocardiogram and come back. Right. So these are some of the things that need to be, 

you know, make it a little more looser, not so tight.

And also one of the things that, 

uh, I get some pushback from people who are skeptical about the diagnosis of that, the existence of I, there are, there are, believe it or not, in this day and age, there are, there are physicians who think EDS doesn't exist. 

Mm-hmm. 

And, and there is because, oh, you didn't get this diagnosis from a geneticist 

mm-hmm.

Is gonna do the same. It's gonna look at the same 2000 criteria as I am looking at it or anybody else is looking at it. Right. He's not gonna do a genetic test because there is no genetic test. Right. And then that's my other thing. Pet peeve about this whole genetic thing about diagnosing EDS [00:53:00] is there are so many other conditions that are hereditary, but we don't send them to the geneticist.

For example, migraines. There is a, a type of migraine called a familial hereditary migraine. We don't send them to a geneticist to diagnose them. 

Mm-hmm. 

There's, there's a form of, uh, high cholesterol that is familial, is based on the diagnosis. You know, it's based on other things. It's not based on sending the patient to a geneticist and say, Hey, does this patient have hypertriglyceridemia?

Right. So there are many, many conditions Marans, for example, let's take a connective tissue disorder marans. You, you don't need to have a geneticist make that diagnosis. If you meet the criteria, you don't need it. So there are many conditions out there. Yes, you can get the geneticist to do a generic test to [00:54:00] make it absolutely sure that this is marans, but you don't have to.

And even, even the published literature on EDS that's out there has said that to diagnose somebody with a EDS, you don't need a geneticist. Um, so there are many conditions that are ary that we don't, uh, we don't need a geneticist to make that diagnosis. But yet there are physicians out there will not accept a diagnosis of EDS 'cause it wasn't made by a geneticist.

Mm-hmm. And 

then we have geneticists who don't want to accept the 2000 criteria and they have their own, they're still looking at the Illa French criteria or whatever, Brighton criteria and all that. And they're still basing it on that. So there is a, there's a lot of education to be done out there and we can, we'll talk about that later on.

Dr. Linda Bluestein: Yeah. There's a lot that that needs to be done and, and you're absolutely right. There [00:55:00] are people who. Try to get in to see a geneticist and they call the office and the geneticist office says, we won't see people who are, have suspected hypermobile EDS. There's not enough geneticists to go around. I mean, we know that this is a much more common problem than what was originally thought.

So yeah, the geneticists need to be focusing on the more rare things, the more complicated genetic things and, and things like that. So, and I think the criteria, the 2017 criteria are, uh, like you said, it's a great start. It's a really good, well-intentioned thing. Um, but yes, following it up with studies would be fabulous to see.

And I don't know, maybe for the road to 2026, maybe there are studies that are going to be evaluated, um, to see, you know, I know, I know there are some studies that have looked at which of these criteria of part, uh, part feature a, of criterion two, which ones are more common. I know for example, genic Papules was one that was.

Like out of those 12 [00:56:00] things, that was one that was more common in the people that had a hypermobile EDS diagnosis relative to some of the other things. So hopefully there's studies like that, that are being done that will, you know, really help to decide what the criteria are. 'cause a lot of people obviously are very upset because they either had a diagnosis and it was taken away or taken.

They thought that they should have a hypermobile EDS diagnosis, but they missed, you know, by one point or something. And so the person said, Nope, I'm gonna diagnose you with HSD. Um, so I, and, and we we're, we always say that HSD can be just as serious, if not more so in some cases then hypermobile EDS. But we know that that's not the reality, right?

There's people who, you know, are having the hypermobile EDS versus, versus HSD label and they get treated very differently and people take the hypermobile EDS more seriously. 

Dr. Pradeep Chopra: Yes. So. 

I don't, I think I may have, um, it's very rarely that I'll diagnose somebody with [00:57:00] hst. I mean, I can count them on my hand really one hand how many people I may have diagnosed with hst.

Mm-hmm. Because I don't, I don't take this criteria as, as so strictly and tightly. 

Mm-hmm. 

For example, if your pinky finger is supposed to go to 90 degrees, right? 

Mm-hmm. 

And if it goes to say 89 degrees or 80 degrees even, does that mean you don't, so I don't go that that far. Mm-hmm. Your, if your, if your elbow is hyper extensible and anyone can see is hyper extensible, but it hasn't, doesn't meet the exact degrees with a, with a protractor, uh, or a goniometer, it doesn't meet that criteria.

Doesn't mean I'm not gonna diagnose you with EDS. Right, right. I, I take it a little more. I fluff it a little bit. Mm-hmm. I take it a little more loosely because if everything else squeaks, if everything else meets, I'm not gonna [00:58:00] be hooked on that one little point. If your car looks like a Toyota Corolla runs like a Toyota Corolla and it says Toyota, but doesn't say crawler, it's still a crawler.

Dr. Linda Bluestein: Right? Right. And I think there's a big difference between a primary care doctor using this criteria and somebody like you who has seen, I don't know how many, thousands and thousands of people with EDS that you've seen over the years, it's obviously, it's a lot. So you, you can pick up on it probably super quickly.

Whereas a family practice doctor who wants to learn the criteria and wants to be able to diagnose hypermobile EDS, they've, they've seen a lot of people with hypermobile EDS, but. They haven't diagnosed them yet. You know, they, they've seen them in their clinic, but they didn't necessarily know that that's what was wrong with them.

So if they're just starting out, I think it makes more sense for them to be more closely tied to a set of criteria because for them to use their gestalt is gonna be a little bit different, don't you think? 

Dr. Pradeep Chopra: Right, right. [00:59:00] Because they don't realize that as that this is a fluffy criteria. It should be fluffed up a little bit.

Loosened up a little bit. And I agree. And you know, um, I had a very interesting di discussion with a very famous pediatric cardiologist who's written a lot about pots and I said, you know, this criteria for diagnosis of POTS where your heart rate has to go up by 30 beats per minute. How tight is that criteria?

I was thinking of criteria. He just broke out laugh. He cracked up laughing. He said, yeah, we have people who have been told that they don't have pots because. Their heart rate did not go up to 30, but went up to 29. 

Oh my gosh.

I'm like, right. That is exactly true. Right. The patient is light ha, lightheaded, you know, is fading all over the place. Has a, [01:00:00] is is having, palpitations, has all the symptoms of pots, but their heart rate did not go up by 30 beats per minute. It just went up by say 28 beats per minute. Right. And they're like, sorry, you don't have pots.

Dr. Linda Bluestein: Right, right. Because we human beings pick those numbers. Right. We pick the number of 40 if you're 19 or younger and 30 if you're over. So yeah, we just picked those numbers. We could have picked 25 or 35 or, or whatever. So yeah, no, I think that's, that's another great example. So I appreciate you bringing that up.

Dr. Pradeep Chopra: That's, that's where experience comes, comes into play. Right. If everything else matches and there's one little criteria that doesn't match, okay, fine. The patient has the condition. 

Our job is to, even if you don't name it, treat the patient. Mm-hmm. Right? And that's 

what, that's what they've said in the, in the, the EDS [01:01:00] Society Association and everything else.

The EDS literature they've mentioned again and again is, you know, if the patient has the symptoms, then treat that right. Whether the patient meets the criteria or not. So if you're having a patient with lightheadedness and palpitations and anxiety and all the other symptoms of parts and does not quite meet the criteria, go ahead and treat it.

You're not gonna say, it's not parts go home. I don't know what's wrong with you. 

Dr. Linda Bluestein: Right. Yeah, no, I totally agree. Unfortunately, the latter is what often happens, you know, people go in for an appointment and they say, Nope, well you don't have this. You don't. I mean, I don't know that they necessarily are saying you don't have pots.

'cause they, if they know about POTS, then they probably are gonna say, well, an increase of 28 or 29, or whatever the number might be. If they even did do a til table test or Nassau Lean test, so they're doing, you know, orthostatic vital signs in their office, I would hope that they are going to [01:02:00] take that approach and they're gonna treat the patient.

But I hear from, you know, listeners of this podcast all the time, that because they don't have these labels, they're being denied treatments and so that is a huge problem. That's bro. So we have had such a great conversation. Can you believe it? We've already been talking for about an hour, so we are gonna have to defer some of these questions to, um, to our next conversation.

Um, and as you know, we always end every episode with a hypermobility hack. So you already gave us a hack in part one, but do you have a hack for part two for us? 

Dr. Pradeep Chopra: Hacks come to my mind. They just come into my brain at, at certain times 

Dr. Linda Bluestein: that that's fair. I, I have to tell you, I, I wanna tell you with just in to buy you a little time, 'cause maybe you'll come up with a hack while I'm, while I'm mentioning this.

Dr. Pradeep Chopra: If you give a problem, I might come up with a hack. 

Dr. Linda Bluestein: Okay? Okay. I will, I will think of a problem, but I, but I just have to tell you. People love your analogies. Every time that [01:03:00] you've been on the show, I get people saying, first of all, how much they love you, and second of all, how much they love how you explain things and they love your analogies.

So I just had to throw that in there. 

Dr. Pradeep Chopra: I like analogies because people, medicine is a complex subject. 

Mm-hmm. 

And you have to, 

you have to think of in, in terms of how, how people were not, you know, were not 

physicians and have, even with physicians, I, I still use analogies. 

Mm-hmm. 

So when I'm talking to my patients, I'm talking in terms of how they would, how we use in our day-to-day lives.

And that's how I explain to them. 

Mm-hmm. 

Uh, but if you gimme a problem, I might. Think of some, 

Dr. Linda Bluestein: so, so, so I, I, let me give you a problem. What about the person who suspects that they have pots, they suspect they have hypermobile EDS and they, they really don't care about the label, but they do want [01:04:00] treatment.

So they're going in for an appointment, they're listening to this podcast, they have an appointment next week, and they, they wanna get treatment for their hypermobile EDS. And we know there's no magic pill for hypermobile EDS. There's no magic pill for pots either, but there are some treatments. What would you tell that person?

Do you have a hack for, for that, that person who has this upcoming appointment and they're, they're less concerned about the label than they are concerned about getting some treatment that might help their symptoms? 

Dr. Pradeep Chopra: Sure. So the first thing is you go to the local pharmacy and you, or you go to Amazon and buy a blood pressure instrument and check your blood pressure and your heart rate.

And of course you can do that whole tilt tables thing at home, just lie down and. For 15 minutes, get your blood pressure and your heart rate stand up. Uh, take, take your blood pressure and heart rate and then again, wait for 10 minutes standing. Take your heart rate blood pressure, and if there is an increase in the [01:05:00] heart rate, don't worry about the 13 number.

Your heart rate increases. Your blood pressure is relatively low. It's not high, but it's relatively normal to low. Then just go to salt, salty snacks. Take salt, drink, uh, electrolyte fluids. Uh, sports drinks. Not Gatorade, not propel. Mm. Sports drinks. There are lots of them out there. Uh, lots of good brands.

Uh, liquid IV is a brand, uh, LMT is becoming really popular among people. 

Mm-hmm. 

And I think it's, I think the amount of sodium in that is a little higher. Take that, and 

compression shorts. Mm-hmm. Compression shorts. 

These are the, so whether you are going to the cardiologist and getting a diagnosis or not, even if you go to the cardiologist and they don't give you the diagnosis, but you are still very symptomatic with being [01:06:00] lightheaded, palpitations, your heart is working really hard, pumping this and your brain fogged.

Mm-hmm. 

Then just do this. And 99% of people who actually have pots love taking salt. 

Mm-hmm. 

You don't need, you don't need to have a label for this, 

you just need to treat it the way, but always get one 

of those devices like an Apple watch. Um, that'll, I prefer the Apple watch because it talks to your phone and it warns you if your heart is climbing up.

And of course if you fall it, send a message to your emergency contacts. But you can use any other device like a Samsung device. There are all kinds of devices that measure heart rate, but it should warn you, um, if your heart rate is rising and if it's rising, then start taking precautionary measures.

Dr. Linda Bluestein: Mm-hmm. And, and I usually tell [01:07:00] people when they're doing the home test to just keep cycling the cuff and keep looking at the pulse for that 10 minute period of time and write down all of the numbers. 'cause what we're looking for is for the pulse to, for a diagnosis of POTS or for, to be consistent with a picture of pots.

Right. Is for the heart rate to come up and, and stay up. Right. So, um, if we have lots of numbers, that's helpful. Lots of sets of vitals. I, I had a patient once who was seen in their primary cares office and the primary care doctor did orthostatic vital signs. And they, for whatever reason, had the person standing for 30 minutes, first of all, which is an incredibly long period of time.

And, and not only that, they recorded in their clinic note, the baseline, uh, blood pressure and pulse, and then the average over the 30 minutes. And I was like, where's the raw data? Yeah, 

Dr. Pradeep Chopra: no. You know what the best thing is to get one of those smart watches, right. Say list. I'm just not pick one Apple. Watch [01:08:00] you get that.

It should synchronize with your phone. Okay. And that's what I do. I even, before I do the whole testing, I look into their heart rate trend. Mm-hmm. And you can see that. You can see how the heart, heart rate spikes all over the place. Yeah. All over the place. If it's spiking all over the place, you have pots or orthostatic intolerance.

Mm-hmm. 

And for those who are interested, there is Peter Row, Dr. Peter Rose, uh, the chief of card, chief of cardiology at John Hopkins or, uh, but he's, he's done a lot of work on, on POTS and orthostatic intolerance. He's the man and he wrote a little book recently on Orthostatic Intolerance. It's worth a read.

It's a pretty good book. 

Dr. Linda Bluestein: I just found it. It's called Living Well with Orthostatic Intolerance. 

Dr. Pradeep Chopra: Yeah. 

Dr. Linda Bluestein: A Guide to Diagnosis and Treatment. So, love it. And it's, it's not even that [01:09:00] expensive. So, um, there'll be a link to that also in the show notes. So that's, that's a great, see, that's a hack on top of a hack.

Dr. Pradeep Chopra: Yeah. And I, I wrote to him and I said, oh, so now you're gonna be rich making money of this book. And he said, no, it John Hopkins. 

Dr. Linda Bluestein: Oh, haha. I don't think, think it's perfect like 

Dr. Pradeep Chopra: seven years, uh, on writing it. 

Dr. Linda Bluestein: Yeah. I think most of these books that people write, um, yeah, like you said, take a long time to write and, uh, yeah.

I doubt that, uh, any anybody in this space is ever gonna get rich on, on one of their books. So, so this was such a great and fun conversation and as I expected, I knew this was gonna happen. I have so many questions yet for us to discuss, but that's okay. 'cause we are gonna have more conversations. And so I want you to save up your questions.

I'm gonna save up my questions if you're listening right now, well, of course you wouldn't hear this. If you aren't listening right now, please submit your questions to bendy bodies podcast.com. We love answering your [01:10:00] questions and so, uh, we will definitely get to lots more topics. Dr. Chopra, before you go, can you let people know where they can find you and if you have any special projects or anything that you're working on right now?

Dr. Pradeep Chopra: Oh yeah. Um, sure. Uh. Well, I guess you can find me. When you Google me, you'll find me. All those negative reviews are not true. Okay. I don't think you have any negative reviews, believe it or not. Yes. Yeah. Uh, but you can find me there. The easiest way is to email my, uh, office. Um, it's snappa, SNAP a2@gmail.com.

Okay. And, um, and that's, uh, the projects that we are working on is we did a beautiful, we wrote a really nice paper That was we, that was my, uh, pet project was we looked at the number of patients with EDS who are being misdiagnosed. 

Mm-hmm. 

[01:11:00] Guess how many people were misdiagnosed with people with EDS were misdiagnosed.

Boy, I not just misdiagnosed. Not misdiagnosed, misdiagnosed. Like they were given a psychiatric diagnose. 

Dr. Linda Bluestein: Mm-hmm. I read this 

Dr. Pradeep Chopra: 94%. 

Dr. Linda Bluestein: Yeah, I read that paper. It was really good. Yeah. 94%. 

Dr. Pradeep Chopra: All we did was we asked everybody who came and we asked these five questions. Mm-hmm. Have you been ever told that this is in your head, it's 'cause of anxiety, or it's conversion disorder or au and all you had to do say was yes and no.

And we looked at the data and we were horrified. 

Mm-hmm. I thought it would 

be like 60, 60, 70%. It was 94.4%. So these people are not, it wasn't missed. The diagnosis was missed of course, but they were instead given a wrong diagnosis. Right. So we're now, we're now writing a paper. I have a really [01:12:00] nice medical student and he's very enthusiastic.

Mm-hmm. Jan Ben Lee is my, he's come and exported writing papers. Oh, that's fantastic. Yeah. It's nice to have some good help. 

Dr. Linda Bluestein: Yes, for sure. And 

Dr. Pradeep Chopra: he's, uh, we're writing a paper, the case series on, uh, the whole, uh, issue of getting CCI from dental extractions. Uh, there's another paper that's in process is do joint stabilizing surgeries help people with EDS or not?

Dr. Linda Bluestein: Mm. 

Dr. Pradeep Chopra: Yeah. 

And the results are shocking. 

Dr. Linda Bluestein: Yeah. No, that's a really good one. I that will 

Dr. Pradeep Chopra: need a drum roll for me to give you the results. 

Dr. Linda Bluestein: Yeah, yeah, yeah. We, we definitely have to talk about that. Uh, I, I, I know I was very fortunate with my terrible, terrible loosey goosey, multi-directional instability shoulders that my upper extremity surgeon was like, no, do not ever let somebody try to tighten up those shoulders for you because it's not gonna [01:13:00] work.

So, um, yeah. Well. So, yeah, unfortunately that, uh, often, often does not have a good outcome. We know people don't heal as well, and oftentimes it doesn't address the underlying problem. And then, and then on top of that, if you end up with CCI or something because of an airway mismanagement, oh my gosh. Talk about just a, you know, uh, uh, just horribly mismanaged case, so, well, those are exciting projects that you're working on.

That's great. 

Dr. Pradeep Chopra: You know, um, Dr. Bluestein, your Bendy bodies has made an impact in the life of a lot of EDS patients. Sometimes I'll be giving them, I'll be telling them something and they say, oh, yeah, I heard that on bendy bodies. Aw. I'm like, whoa, 

Dr. Linda Bluestein: that makes me happy. 

Dr. Pradeep Chopra: And, and I did go back and I looked at some of your, uh, of, of the podcasts that you've had, and you've addressed quite a few, uh, difficult topics in EDS.

[01:14:00] You have, you've done well. 

Dr. Linda Bluestein: Well, thank you. It's over 150 episodes now, which means that the library is over 150 hours. Yeah. And if they were all like our conversation with Dr. Boase, it would be 450 hours. That was a long one. That is a long one. That was a long one. So, well, it's been so fun chatting with you as as always, and thank you for the kind words and I look forward to our next conversation.

Dr. Pradeep Chopra: Thank you. And thank you for having me once again. Of course, and it's always a pleasure.

Dr. Linda Bluestein: I really loved that conversation with Dr. Chopra, and I'm sure you did too. As I hear from listeners like you all the time, he's so great at explaining things and has such great analogies and has so many years of experience treating people with EDS and comorbidities, so this was such an important conversation.

Thank you so much for listening to this week's episode of the Bend D Bodies. With the [01:15:00] Hypermobility MD Podcast, you can help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast. This really helps raise awareness about these complex conditions.

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