42. Pursuing a Diagnosis with Linda Bluestein, MD

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00:00
Jennifer Milner
Welcome back to Bendy Bodies with the Hypermobility MD, where we explore the intersection of health and hypermobility, focusing on dancers and other aesthetic athletes. This is co host Jennifer Milner, here with the founder of the Bendy Bodies podcast, dr. Linda Bluestein. Our goal is to bring you up to date information to help you live your best life. Please remember to always consult with your own healthcare team before making any changes to your routine. Our guest today is our very own Dr. Linda Bluestein, founder of Bendy Bodies and co host of the podcast. So. Welcome, Dr. Bluest. Dean. 

00:52
Dr. Linda Bluestein
So nice to see you, Jen. 

00:57
Jennifer Milner
I love when we do the ones where we talk to each other because we never get a chance to just sit and chat with each other. So I'm really excited about doing this, and it's going to be a great topic today that I know a lot of people are asking about. So everyone knows that you're the founder and the co host of Bendibodies, but not everyone may have heard your own Health Journey story. So could you share with us your own road to being diagnosed with Eds? 

01:22
Dr. Linda Bluestein
Sure. So, I knew very little about Eds working as anesthesiologist, and I'd gone through medical school, of course, residency, et cetera, but I still didn't know much about it. And I was diagnosed with something called a tarlov cyst, which is where there's a weakness in the lining surrounding the nerves. And so you get a bulging of these nerves and it can compress the other nearby nerves and cause sciatic type pain. And I had this terrible sciatica type pain, didn't go away for quite a long time, and that was the first time that I really heard about Eds. As I was reading more about tarlov cyst and trying to understand more about this diagnosis that I had and how it might be affecting my symptoms, I started reading that this is something that happens commonly in people with connective tissue disorders. And as I started digging into that a little bit more, I was like, oh, I wonder if this could explain some of the other things that I've experienced. 

02:20
Dr. Linda Bluestein
For example, I've had problems with ulcers on my cornea, which is kind of an unusual thing, especially the way they came about. I've also had a problem with this is what led to really my having to leave the operating room. I had a huge cyst inside a bone in my wrist, and I had to have bone grafting surgery, which led to a complication called CRPS. And so these were a lot of things that are kind of unusual. And as I started reading more, it was like, well, these maybe could be pointing to a connective tissue disorder. And the first rheumatologist that I saw, I'll just say was a jerk and looked at me like, you want to have something wrong with you? And it was like, no, I don't want to have something wrong with me. I want to know why all of these things are happening. 

03:07
Dr. Linda Bluestein
And for years I'd been telling my primary care doctor and my other doctors, I think there's something wrong with me. I get injured doing everyday things, I don't heal properly. I knew that I had difficulty building muscle mass and keeping my body strong, and so I kind of knew something was going on. But it wasn't until I was in my mid to late 40s that I actually, I guess mid 40s, when I actually got the diagnosis of hypermobile Eds. Since that time, numerous other family members have been diagnosed with hypermobile Eds. Ironically, some from listening to the podcast because I bring it up so often in conversations, I try not to talk about it too much, but some of them have listened to the podcast and been like, hey. So it's something that definitely has helped a number of us now that we understand the connections. 

04:04
Dr. Linda Bluestein
That's kind of how all of that evolved. I had to leave the operating room because of my problems with my wrist. I was no longer to do that job. But then trying to figure out how to help other people, I opened my clinic, I started my first podcast was The Hypermobility Happy Hour, which I co founded, and that was the first podcast surrounding joint hypermobility. And now there's actually several podcasts that are kind of related to this topic. And of course now I'm thrilled to be working with you on Bendy Bodies. I think it's a great marriage of the connections that I have and the perspective that I bring and the perspective that you bring and the connections that you have because you and I have such complementary skill sets. So I think it's a really cool project and it's been a lot of fun and we keep hearing from people that we're helping them, so that's the best part. 

04:57
Jennifer Milner
Well, I agree. I think a lot of people are getting helped by what we do, which is of course the whole reason that we do it and share our own stories, which can be hard sometimes. So our whole conversation today is centering around seeking a diagnosis. But before we get into that, could you go over the different types of connective tissue disorders and what might lead to a diagnosis for them? 

05:22
Dr. Linda Bluestein
Sure. So not all connective tissue disorders are hereditary. That's the first thing that's important to know. And connective tissue disorders are usually related to the proteins, the collagen and elastin, and the extracellular matrix like fibrillin and other things that are involved in forming connective tissue, which is present in our ligaments and our tendons and basically all throughout the body. We have connective tissue everywhere in the body. That's what's connecting everything to everything else. The hereditary disorders of connective tissue include Marfan syndrome, osteogenesis imperfecta, louis dietz, Stickler syndrome, and the one that I generally focus on the most because number one, it's the most that I know about, and number two, it's the one that affects the most numbers of people are the ailers Danlos syndromes. And we know now that there are 14 different subtypes of Ehlers Danlos syndromes. And when I'm working with my patients, I really try to focus on the big picture of the Ehlers Danlos syndromes because of the fact that the criteria may change over time. 

06:24
Dr. Linda Bluestein
And we know that there are the 2017 criteria that were established by the International Consortium, but that may be revisited. The hypermobile type of ailers Danlos syndrome is the most common type by far. It accounts for 80% to 90% of cases of Ehlers Danlos syndrome. And we know that is the only type that does not yet have a genetic marker. There is a group at MUSC working the Norris Lab that is working on finding genetic markers, and they have found a candidate gene for hypermobile Eds. They will be publishing about this, hopefully fairly soon, once they are able to do so, that'll be really exciting. And also the Eds Society is working on the Hedge study, where they are also collecting large numbers of patients to do genetic analysis, and they're working to find other genes as well. Because most of us that work in this space, we do believe that it's not one gene that accounts for the clinical picture. 

07:27
Dr. Linda Bluestein
The phenotype that we see hypermobile right now, diagnosing hypermobile Eds is based on clinical criteria, and there is a worksheet that can be found on the EHRs Danlow Society website. There's also a link on my website to that worksheet. And otherwise the blood test can be done to rule out some of the other genetic disorders. You can do a blood test to rule out the other types of Ehler Stanlos syndromes. The blood test and DNA test can be used to rule out Marfan syndrome and the other hereditary disorders of connective tissue. 

08:06
Jennifer Milner
So what I just heard was a very great answer that boils down to there's not one thing. So anybody who's looking for a fingerprick and a ten minute test to tell them, guess what? You've got this. That's not the way that it goes. It's a complicated path, which is why we want to talk about it and why so many people get frustrated with it. I know that the topic of getting a diagnosis for Eds, especially hypermobile Eds, can be very divisive and people have strong opinions on it. Why might a medical staff or medical professional specifically encourage someone to seek a diagnosis? 

08:45
Dr. Linda Bluestein
So once a person has a diagnosis, there might be some things that they could have access to that they would not have access to otherwise. For example, school accommodations. A lot of school age students can really have a lot of difficulty with day to day functioning. So it can be very beneficial for them to have accommodations so that they are able to perform their best in school. So having a diagnosis can be very important for that, for people that are working. And we want to keep people working as much as we possibly can. Working is so important for our sense of purpose in life and meaning and so much of who we are as human beings. And so it can be very helpful to have the diagnosis for work accommodations. I have to confess, when I first was having my own health problems, I had no idea that my employer even had any obligation whatsoever to do reasonable accommodations for me. 

09:46
Dr. Linda Bluestein
And it wasn't until much later that I found out, well, what exactly does that mean? And basically what that means is that if you are working for the Mayo Clinic, their degree to which they need to accommodate people with disabilities is significantly greater than if you're working for me with my tiny little micropractice. I am not expected to build ramps and all kinds of other things. But if you're a Mayo Clinic, you're a massive institution. You are expected to accommodate people with disabilities. So it's important to know for those things. It's also important for insurance coverage. So, for example, if you have a diagnosis of Eds, you may be able to get more visits for physical therapy, and you also may be able to get insurance coverage for out of network providers if you don't have an in network specialist for Eds. So I have had some patients get really good success with getting coverage with visits from me, even though I'm out of network for them, because they can demonstrate that there is no in network provider for Eds, and so therefore they can get coverage. 

10:51
Dr. Linda Bluestein
Sometimes you can also get better access to referrals. And those are very important because Eds does not belong to any one specialist. That's part of the difficulty. It's not like it is a solo neurologic condition, so it belongs to the neurologist. It's not solo an autoimmune condition, where therefore it would belong to Rheumatology. Probably the closest specialty to which Eds would belong, hypermobile Eds, I should say specifically would be physical medicine and rehabilitation. A lot of us believe that specialty is probably the best suited to taking care of those patients. Geneticists, of course, are also extremely important, especially for the other subtypes of Eds besides the hypermobile type. 

11:39
Jennifer Milner
That makes sense. And as you said, again, there's not one specific person, right? So it gets complicated. So on the flip side of that, why might some medical professionals discourage someone from pursuing a diagnosis? 

11:55
Dr. Linda Bluestein
So I often will talk to people, even if I suspect that they have hypermobile Eds, and I will let them know that this could have significant implications when it comes to life insurance. We know that hypermobile Eds does not impact lifespan. It greatly impacts quality of life. But in general, for most people, it does not impact life expectancy. But insurance companies are not at the point yet where they're making that distinction, at least often this is the case. So sometimes if a person does not have that diagnosis yet, I will ask them, do you feel like you have adequate life insurance? Because I don't want to put this on your record unless I know that you feel comfortable in that regard. And also the other thing that I would mention is medical insurance, that if you work for an employer, then it's easier. But if you are self employed or just shopping on the marketplace, then and I'm not an insurance expert, so everyone needs to do their own due diligence here, but things are constantly changing in the insurance space. 

12:58
Dr. Linda Bluestein
And so if you have a preexisting condition that can impact your ability to get coverage. So those are a couple of reasons why I would maybe discourage someone from pursuing a diagnosis. The other reason I would say is I always ask people why is this important to you? And it would depend on their reasoning. If they feel like they are doing really well, they feel like they're doing all the right things, they feel like they don't need it for validation, they don't really need it to access referrals and things like that, then oftentimes they say, okay, I don't think you need to pursue a diagnosis. I think you can continue to do what you're doing. You're doing the right things already. And so maybe hold off on doing that. The last thing I want to add under that is that every single type of specialist needs to know about these conditions, because most of us that work in this space do believe that hypermobile Eds. 

13:52
Dr. Linda Bluestein
And if you don't fit that clinical criteria, but you have a picture that looks like that, then now the default diagnosis is hypermobility spectrum disorders. If you fall into either one of those categories, we know that those seem to be getting more common and they also seem to be much more prevalent than what we originally thought. And therefore these people are presenting to all types of specialists. So it doesn't matter what type of medical practice you have, you need to know about these conditions. 

14:23
Jennifer Milner
Yeah, that's fair. And I can see the reasoning, as you said, for both encouraging and discouraging from a medical point of view. So on the other side of the prescription pad, you and I have both spoken to a lot of people who have said that having a diagnosis made them feel affirmed, like they're finally being told it's not in their head. And you even said that earlier in our discussion today. I know something's wrong with me, I just want to know what it is. So, keeping that in mind, what are some reasons a person, an individual might pursue a diagnosis? 

14:57
Dr. Linda Bluestein
So it is very validating. I know for me, personally and professionally, when I have given people this diagnosis, they feel like, okay, I'm not crazy. And it is amazing what happens when you realize that, because it's so common for many of us, myself included, to have experienced medically induced trauma, meaning that you've gone to appointments and they've been traumatic for you. And that's all I mean when I say medically induced trauma, you've gone to an appointment or you've had a procedure or whatever, something didn't go well, that person dismissing your symptoms can cause you to have self doubt. It can activate your sympathetic nervous system and actually worsen the symptoms that brought you there in the first place. For example, pain disordered, sleep, palpitations, anxiety, et cetera. And that exacerbation of those symptoms can cause problems in your closest relationships. You can end up getting so obsessive with your symptoms because you know something is wrong and you just don't know what it is that the people around you feel. 

16:10
Dr. Linda Bluestein
They kind of push you away and it can become very isolating. And we know that isolation is a very bad thing. It's really so important to be connected with other people and have support. And we know that love and fear are opposites of each other. And when we're in that fear part of our brain that reptilian part of our brain that exacerbates our symptoms on the other side, if we feel loved and cared for by our providers and our friends and our family, then that can really help lessen our symptoms. 

16:44
Jennifer Milner
Yeah, I can definitely see that. So looking at all of that, would there be reasons that someone personally might not want a diagnosis then? 

16:55
Dr. Linda Bluestein
I think that's a highly personal thing. I think that there definitely are people that I have seen as patients and I've discussed with them. I always discuss at the very beginning what is your goal? Because most of these people I could talk to for days and not get to the bottom of everything that would be important to talk about. So it's really important to know what their goal is. And for a lot of the people it is to have a diagnosis. Every once in a while, though, I get people that they really don't want a diagnosis, they want a comprehensive treatment plan, they want to know what are the things that they can do, but they actually don't want the label. And I think that's really fabulous if they can have that intuition that for them having a label is actually not going to be helpful and could potentially be harmful. 

17:47
Jennifer Milner
Yeah, I could see that. And as you said, it is very individualized. So everybody is going to have to make the choice that they think is best. And most people will feel pretty strongly one way or the other which direction they want to go. So we've talked about the different angles of having a diagnosis, sort of the pros and cons from both sides of the table. So let's assume that someone does want a diagnosis. And you've shared there's really no one clear path to getting a diagnosis. So how would someone start? 

18:19
Dr. Linda Bluestein
Yeah, that's a really good question. So oftentimes this is raised by someone's physical therapist. That is a very common thing. And I do find that physical therapists are much more knowledgeable about hypermobility than most physicians are. So oftentimes the physical therapist will say to you, gosh, you really are. Actually, that was kind of how it was first raised to me, as I think about it. I mean, I was having this in my own mind, but one of my physical therapists had pointed that out. Many of my physicians had pointed out that I had severe elbow hyperextension. They had pointed out that I had extreme neck range of motion, but they never said anything about what that might mean. In fairness to them, they probably also didn't know. Awareness about Eds definitely has grown over the years, for sure. In terms of where someone would start, I would say that it's important to have one person in your corner, and that could be your primary care provider, that could be one of your specialists, that could start with your physical therapist. 

19:24
Dr. Linda Bluestein
Your physical therapist will do an assessment and they will make notes. They will put things on your record in terms of what they found on their assessment. But in terms of ICD ten codes, those do have to come from a physician or now a nurse practitioner or a physician's assistant. So if your physical therapist is somebody that is knowledgeable about other providers in the community, they could maybe point you in the direction of a primary care provider. Or maybe there is a rheumatologist who is interested in these conditions. A lot of rheumatologists, they're so highly focused on autoimmune disorders that they're not as interested in Eds. So you don't want to automatically assume that someone that is a rheumatologist is going to be super interested, even though they deal with a lot of joint type issues. So it's really kind of finding that person who really will take an interest in you will take the time, and also for you to explain that I don't expect to have this accomplished in one visit. 

20:28
Dr. Linda Bluestein
If you're working within the traditional healthcare system, physicians are paid based on number of patients seen in a day and procedures and surgeries basically by insurance companies. That's what insurance companies value. So in a lot of practices, they are seeing very large numbers of patients in a day. They might be seeing 30, 40, 50. I've heard of doctors seeing 80 patients in a day. I cannot even imagine. If you think about that worksheet, there is no way that someone is going to be able to take the time to do that in a ten minute visit. It's physically impossible to do that responsibly. So I think it's important to build the relationship and to say, this is something that I have thought about. I'm wondering if it might apply to me you could take in the worksheet, you could take in an article or something that you have found online. 

21:19
Dr. Linda Bluestein
Maybe you've found it on the Ehlors Danlo Society website and with a couple of things highlighted. Don't get too, you know, more sparing information is better. And then let them know that this is something that you would like to discuss at a future visit and would they be open to that. 

21:38
Jennifer Milner
That's great advice. Building on that, let's assume, as with this person who is seeking a diagnosis, let's assume that no one in their medical area is that a connective tissue specialist. So what possible specialties, as you've mentioned earlier, might be likely to recognize connective tissue disorders. If you can expand on that a little bit, like, where would they go next? As you mentioned, Rheumatologist, what others? 

22:05
Dr. Linda Bluestein
Sure. So it's always surprising to me. I had a patient the other day who shared with me that she has an amazing gastroenterologist who's very aware of Eds, aware of Mass Cell Activation syndrome. And I was so excited because she is in a local area to me, and I always love to have more and more resources. So I was very happy to hear about that. If you are seeing, for example, a cardiologist for your Pots which postural orthostatic Tachycardia syndrome, they may be more aware of Eds because of the fact that there is such significant overlap between Pots and Eds. Now, some cardiologists are not good at really recognizing or treating Pots at all. Other cardiologists are really knowledgeable about Pots, but they may be treating it as a cardiovascular condition and not the neurologic condition that it truly is. If you're seeing a neurologist for Pots, which if I have my choice, that's where I usually send people, is to a neurologist for Pots. 

23:11
Dr. Linda Bluestein
If I feel that they need really a lot more than what I can offer in terms of Pots treatment, I refer them to some of the neurologists who are really super fabulous in this area. And they are, of course, knowledgeable about Eds. Again, because of the overlap. Some allergy and immunology doctors are quite knowledgeable because of the mass cell activation syndrome patients that they may be seeing. But again, if you're a very traditionally trained allergy immunology doctor, I know some, they do not acknowledge mass cell activation as a condition. And then there are some oncologists who treat mass Cell activation syndrome and so they might be more knowledgeable. Physical medicine and rehab, as I mentioned, that might be a good specialty to pursue, especially because they would be a type of doctor to be really working with you in terms of improving your physical functioning. 

24:08
Jennifer Milner
Okay. All right, so you talked about this a little bit earlier, but I want to circle back to it. If a person has an appointment with a doctor that they've heard is open to learning about things outside their field or seems to be interested investing in their patients, if it's a GP or an internist, something along those lines. Is there anything that the patient can do to prepare or to bring to that meeting to help them get the most out of the meeting? You talked about the handouts and the sparse highlighting. Are there any other steps that they can take to be ready when they walk into that meeting? 

24:46
Dr. Linda Bluestein
Sure. So the Eds Society, the Ehlers Danlow Society has great resources on their website, and they have the papers from the 2017 American Journal of Genetics. They have a lot of those papers also in layman's language. Now, of course, your physician doesn't need it in layman's language. However, they are abbreviated in that capacity. And that might be a good place to start with your primary care provider or one of your specialists. And I highly recommend printing those up. I would print two copies. So you have a copy and your doctor has a copy. Highlight the relevant sentences. Just a very small number, not the whole thing. I have a tendency to do that sometimes. My family makes fun of me because my books, the whole things are highlighted and there's sticky notes all over the place. You want to keep it very sparing. And there also were new papers that were published in the 2021 American Journal of Genetics that came out, I believe it was November. 

25:49
Dr. Linda Bluestein
There's a whole series of articles about Ehlers Danlos that are, of course, four years newer than what they published in 2017. They're a little bit different than what was published in 2017. So some of the 2017 papers are still super important because they address things in a little bit different way. So I think those are some really great resources. And if someone is looking to dive a little bit deeper into this topic, I have created a course that I'm just going to give a quick plug for a course that I created with Kia Steele, Hell's Bells and Mass Cells. If someone is interested in kind of diving deeper into how to work with your doctor to get more out of your medical appointments. If you have a complex illness or you are needing a lot of medical care, that's great. 

26:38
Jennifer Milner
I know that there's a fine line between feeling like, I know there's something wrong with me and I want to find out what it is and it becoming an obsession. And you visit 20 doctors and they're all like, no. So you want to walk that line for your physical health and also for your mental health. And sometimes it's hard to know where to stop. And you and I have interviewed and heard from so many amazing people who have told these stories over and over again about how I knew something was wrong with me, I just didn't know what it was, and how their individual journeys to getting a diagnosis were so different. But all of them had that common thread of I knew something was wrong. And when the doctor said nothing was wrong, I knew they were wrong and just trying to get there. 

27:26
Jennifer Milner
But at the same time, we want to be realistic and not become obsessive about it. If a couple of doctors have been seen, no one agrees with the patient's gut instinct that they have a connective tissue disorder. Where can this person go from there? And how long do you encourage someone to keep trying for a diagnosis, realizing that once they meet you, that's great and that's the endpoint, and they probably will get that diagnosis, but how long would you encourage someone to sort of keep going for that? 

28:01
Dr. Linda Bluestein
Yeah, that is such a good question because there's an institution that I'm aware of that has a program for managing chronic pain. It's like a resident program. You stay there for several weeks and one of the things that they tell you is stop chasing diagnoses, stop going to doctors, stop. And I understand kind of why they say that. But at the same time, I think it's really hard because a lot of people, they have been dismissed, they have been disregarded, they have not been listened to. So I would go back to again, what are your reasons, what are your goals? Why is it that this is something that you feel that you really need? Because there was a paper that just came out, I believe it was August of this year, looking at muscle mass in people with HEDS and HSD and muscle strength. And basically one of their conclusions was treat people with HSD and Eds, hypermobile Eds the same. 

29:02
Dr. Linda Bluestein
Which I would say not just for the muscle strength part, but most of us, I think, treat those two conditions pretty much the same. So in terms of getting a diagnosis specific to Eds, I would say keep that in mind. The other thing is there is an ICD ten code for hypermobility syndromes. And I do sometimes see people I just saw someone a couple of days ago, actually, that had a diagnosis from another provider that was something like hypermobility. The way they fully wrote it out was something like hypermobility related joint pain or something like that. So maybe your provider is willing to write something like that. Just make sure they don't write benign joint hypermobility. Because that is like as soon as people see the word benign, even though benign really in general means not cancer, but if people see the word benign oftentimes, they think that it means that it's an innocent thing. 

29:55
Dr. Linda Bluestein
It doesn't cause any problems. The other thing that I want to mention is it's really important to be aware of confirmation bias and medical student syndrome. So when I was a medical student, things were completely different. We didn't have this crazy access to the internet. We didn't have people that could themselves look up all this information, read all these studies, and so this was really known. As medical student syndrome, but now it's kind of anybody's it could be anybody's syndrome. But hypochondriacis what can happen is we can read these things and we get confirmation bias. If we see a list of 20 things and we have eight of those things, we'll be like, yes. And we can end up thinking, I must have this, even though maybe what you have is something different. So it's important to keep in mind that I would say that if you think something is wrong with you're probably right. 

30:48
Dr. Linda Bluestein
I had somebody tell me once, I feel like I'm dying. This was when I was at Mayo as an intern, and I took that very seriously. It was an inpatient in the hospital, and he was like, I don't have chest pain. I don't have shortness of breath. I don't know what it is, but I feel like I'm dying. And I'm like, okay, this has got to be something is going on here. And it turned out he had meth hemoglobinemia. Long story. But anyway, he was right. He was dying. And there was actually a very easy fix for what he had. We gave him the antidote methylene blue, and he was fine. So I do believe that people know their bodies really well, but I think we have to be very careful with the information that we read nowadays. We could spend 24/7 reading things online, and we need to remember that the people who spend more time online in general are people who are not doing as well. 

31:37
Dr. Linda Bluestein
So when I first was having issues with my tarlov cyst, I did try to remind myself, but it was hard, that the people on the tarlov cyst listserve were people that were having a lot of problems. And the people who had tarlov cyst who were out doing their thing and happy and having no problems, they're not hanging out online. So I think that's just another important thing for us to remember. 

32:01
Jennifer Milner
That's very true. And the Internet, as we know and see so often, is that double edged sword. It's a great place to get information that we used to have to go to a library and look up and scroll through the microfish or flip open an actual encyclopedia. So we have so much information at our fingertips. But also there's no guarantee that, number one, that information is right. And number two, the sample that you come across is an accurate sample of everyone. So you lurk in a connective tissue disorder group, and you hear all of these horrible things because perhaps these are the people who need support and they need to talk to each other. And as you said, the people who have connective tissue disorders who are doing just fine and not having so many issues are out there living their life and may not need that group. 

32:46
Jennifer Milner
So you may not realize that it's not an accurate representation of every person with a connective tissue disorder. So, yeah, it's important to remember that even as you and I work on the Internet, that's where we put our information. But that's one of the reasons we do it, is we want to help people find accurate information and sort of see a reasonable presentation of that information and not hopefully a bias in one way or the other. 

33:13
Dr. Linda Bluestein
And it's so important what you just said, because the source of the information is so important. So oftentimes I have people send me things or ask about things and they're totally not credible at someone trying to sell some crazy thing. If you wanted to find something that says that popcorn causes cancer, I think you could type that into Google and you could find somebody saying that popcorn causes cancer. So I think we need to be careful about our search terms also and try not to lead the witness, so to speak. If we're trying to look something up, I think it's important to type that search term in and or when you find the resources to just be very careful about what you read. 

34:00
Jennifer Milner
I would agree with that. We have covered a whole bunch around sort of seeking a diagnosis, whether or not different reasons that medical professionals may or may not encourage it, and different reasons people themselves may or may not want it. And you've given us so much information about how to start seeking that diagnosis because it's such a complicated path with so many different ways to kind of get there and no one sure. Hypermobility 101, here we are. Come to us for your ten minute fingerprick and find out whether or not you have this. Is there anything else that you wanted to add that we didn't have a chance to cover yet? 

34:38
Dr. Linda Bluestein
I did want to just briefly mention a couple of myths. One. Is that because of the fact that Ehlers Danlow syndromes are genetic? I have heard other colleagues say that if someone is not diagnosed with Eds in childhood, they must not have the yeah, I literally I presented my self, I took a risk and I presented myself at one of these collaboration meetings where you discuss like, difficult pain patients and I told them about my diagnosis. Blah, blah. And they said, Are you sure? Because if you're not diagnosed, that's a genetic disorder. And it was like, really? Because as you get older we know that your collagen is less strong and healing isn't as good. And so it's not surprising that some of these things will come out more with age. And also I had symptoms since I was a baby. I didn't really go into those details, but I had lots and lots of symptoms in childhood as a teenager, et cetera. 

35:41
Dr. Linda Bluestein
The other thing that I would like to mention is that the whole idea that these are quote, invisible illnesses I think is really so ironic because, yes, I think there is a certain aspect that's invisible, but they're also incredibly visible. Like you can see if someone is hypermobile, right? I mean, you and I can pick them out from a mile away, right? And then also there's a lot of the other features of hypermobility disorders or connective tissue disorders. Not that those are interchangeable terms, but there are some features that are quite visible. So it's important to keep that in mind. And then the last thing that I wanted to mention is just that people are very heterogeneous in their presentation. So it's important to know that if you think that you have hypermobile Eds or you know someone that has hypermobile Eds and someone else has it, they're not necessarily going to look identical. 

36:36
Dr. Linda Bluestein
And this is why we think that there's probably multiple different genes that are responsible for creating this phenotype. The phenotype being the clinical signs and symptoms that we see and the genotype being the genes that underlie that phenotype. And we know that in medicine. What do we look for? We look for patterns. If you hear the word syndrome, it means pattern. We are looking at, okay, this person has this pattern that fits this best. Oftentimes we'll have a working diagnosis and we'll have a differential diagnosis, meaning that this is what we think the person has right now, maybe these are the things that alternative explanations. That's what the differential diagnosis is. And the last thing that I wanted to mention is just that keeping in mind that caring for hypermobile Eds HSD patients is very time consuming. And as I mentioned earlier, with insurance it is very challenging because they recognize numbers and procedures. 

37:35
Dr. Linda Bluestein
So there are a lot of us that do take care of this population of people. And we wish that we could work within an insurance system, but we know that we can't do our job the way we want to and really take care of our patients the way we want to. And that's why we do it the way we do. 

37:53
Jennifer Milner
Yeah. And that's a whole other conversation that we could have about trying to navigate the medical insurance field, right? And all of the issues that come along with that I know even our listeners could tell us hours and hours of stories about because it's difficult. As you said, it's complicated. But nothing about connective tissue disorders is necessarily straightforward. So we're grateful that you are sharing your expertise and your wisdom on this subject with us. So if people wanted to get in touch with you and learn more about what you do or set up time to work with you, for those of the people out here there who don't know, how can they reach out to you? 

38:39
Dr. Linda Bluestein
So the best place to go is to my website, which is WW dot hypermobilitymd.com. And from there you can see kind of what the different options are. I do workshops, I work one one with people and I also share a lot of free information, obviously through the podcast, but through lots of other social media outlets as well. I'm on Instagram a lot. Also on Twitter, Facebook, LinkedIn. Those are probably the main places, but start with my website. That's the best place to kind of get a good overall picture. 

39:16
Jennifer Milner
And also, I know our listeners, I'm sure, follow you on Bendy Bodies, Instagram, Bendy Underscore Bodies, but you also have your own page on Instagram at Hypermobilitymd where people can also and should subscribe and get all of the great information from you that way as well. Well, you have been listening to Bendy bodies with the hypermobility MD. Today we have been speaking with Dr. Linda Bluestein, the actual hypermobility MD herself. So thank you so much, Dr. Bluestein, for sharing your information with us and letting us hear from you on this really important topic. 

39:58
Dr. Linda Bluestein
Absolutely. It was great to chat with you and I hope that a lot of people find this helpful. And of course, we love to hear from our listeners about what do they want to hear about, what are they finding helpful? We love getting those messages. So I would encourage anyone listening to this episode that has things that they want to share with us. Please don't hesitate to reach out. Info@bendybodies.org is the best email to use, but you could also reach us on our Instagram page as well. 

40:28
Jennifer Milner
Absolutely. So until next time, thank you everybody for listening and we will see you later. Bye bye. 

40:37
Dr. Linda Bluestein
Thank you for joining us for this episode of Bendy Bodies with the Hypermobility MD, where we explore the intersection of health and hypermobility for dancers and other aesthetic athletes. If you found this information valuable, please share it with a colleague or friend and leave us a review on your favorite podcast player. Remember to subscribe so you won't miss future episodes. If you want to follow us on Instagram, it's at Bendy Underscore Bodies and our website is WW bendybodies.org. If you want to follow Bendy Bodies founder and co host Dr. Bluestein on Instagram, it's at hypermobilitymd all one word, and her website is WW dot hypermobilitymd.com. If you want to follow cohost Jennifer Milner on Instagram, it's at jenniferperiodmilner Milner and her website is www.jennifermillner.com. Thank you for helping us spread the word about hypermobility and associated conditions. We want to hear from you. Please email us at info@bendibodies.org to share feedback. 

41:46
Dr. Linda Bluestein
The thoughts and opinions expressed on this podcast are solely of the cohost and their guests. They do not necessarily represent the views. 

41:53
Dr. Linda Bluestein
And opinions of any organization. 

41:54
Dr. Linda Bluestein
The thoughts and opinions do not constitute medical advice and should not be used in any legal capacity whatsoever. This information is not intended to diagnose. 

42:02
Dr. Linda Bluestein
Treat, cure or prevent any disease, as. 

42:04
Dr. Linda Bluestein
This information is for educational purposes only and is not a substitute for medical advice, diagnosis, or treatment. Please refer to your local qualified health practitioner for all medical concerns. We'll catch you next time on The Bendy Bodies podcast.