MCAS Perspectives - Personal and Professional (Office Hours)

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[00:00:00] Welcome back, Every Bendy Body, to the Bendy Bodies podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility MD. Today we are going to do another episode where you guys are my guest. I'm going to periodically be doing these solo episodes, so be sure to submit your questions. You can visit bendybodiespodcast.com to submit your question. Please also visit the Bendy Bodies podcast to sign up for the Bendy Bulletin. We recently started releasing these newsletters and we would love your feedback on that also. Be sure to stick around until the very end so you don't miss any of our special hypermobility hacks.

As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Let's [00:01:00] get started!

I want to start off by reading a review from Sarah G., DPT, and she commented, as a doctor of physical therapy, I enjoyed listening to this informative podcast for all sorts of hypermobility related topics. I am a hypermobile individual with multiple autoimmune disorders and I specialize in treating hypermobility and EDS.

It's great to hear current research from MDs who are leaders in the field. I also enjoy the dance related episodes as I treat many aerialists. Thank you for providing this high quality evidence based content. I just wanted to say thank you so much to Sarah for this kind and helpful five star review.

Please keep the feedback coming. It is so helpful. For us to know what you're liking and what you're not liking, so please let us know whether it's positive, negative, or a mix. Uh, we really want to hear from you. Before I started my first podcast, I thought podcasting was so easy because I would hear people talking and it seemed [00:02:00] like they were just hanging out and chatting casually and it seemed like it was so, so easy.

But like with most things in life, once you do it, you realize that it is so much more work than you think it's going to be. But your feedback is what really makes it All the more worthwhile. So thank you so much for your feedback, and please do keep it coming. Next, we're going to address a question from one of the listeners.

Hi, Dr. Bluestein. First, thank you so much for creating the Bendy Bodies podcast. I found the podcast a while ago and have found many of the episodes to be incredibly informative and helpful. A question, maybe for your next solo episode, which happened to be timed quite well. I am 37 and have, like many others, experienced tons of medical gaslighting in my journey to get a diagnosis and trying to heal and improve my quality of life from what I have always thought was the trifecta of hypermobile EDS, mast cell activation syndrome, and POTS or postural orthostatic tachycardia syndrome.

[00:03:00] I know everyone's experience is different. But for me, the root cause of all my issues, including hypermobility, actually seems to be mast cell activation syndrome. But it wasn't until this year, 10 years after I started experiencing debilitating symptoms, though I have had symptoms in one form or another my entire life, that I discovered that MCAS is likely the root cause for me.

Now that I'm working with a doctor who specializes in MCAS and treating it appropriately, my quality of life is significantly improving. Are we doing a disservice to the hypermobile and hypermobile EDS community by not talking about MCAS and MCAS treatment more? If I had come across MCAS 10 years ago, when I first started googling my symptoms, rather than hypermobile EDS, I think my path to getting well would have been much different and faster.

Thanks so much, Jane. So I love this question and was excited to address this on the podcast because I feel like there's some different [00:04:00] elements of this question that are really important. So I'm going to start with this. Let's start first with the end of her question about not talking about mast cell activation syndrome more.

So I think it's kind of interesting to point out that nowadays we have so many different ways that we're getting our information that back when I was in medical school and when I was in my residency training in anesthesiology, we didn't have these, uh, these methods of learning. So now we have things like podcasts, of course, we have video platforms like YouTube.

We have the social media that informs us. Includes a whole variety of things, including short form video. We have blogs, we have vlogs, et cetera. These things are very helpful, but at the same time, it's very, very difficult to convey complex, nuanced topics when you're limited to the A certain amount of space, you can't add links like on Instagram, and you're trying to also make the information appealing to the reader.

There are many researchers and scientists [00:05:00] who have no social media presence at all, so you won't find their information there. And we all have limited bandwidth, so we all choose how we spend it. Um, I do spend a lot of my time, of course, doing this podcast and social media and want to thank my amazing team, um, but it truly does take a village when you're doing something like this, which of course also costs money.

So like for me, because of the podcast and I do so much on social media. Um. I don't have time for as many other things like research, writing, um, seeing patients, etc. And this is also challenging because the medical management of conditions doesn't reimburse anywhere near as well as when you were doing things like surgeries and procedures.

And it was actually quite interesting. There was a podcast guest very recently who literally said to us, um, that they were going to be going into the OR. That afternoon, I needed to reschedule the time because they were going to be doing a procedure that pays the bills. So it's probably not known to a lot of people that if you are [00:06:00] doing more of the medical management of things, and especially if you're taking care of people with complex conditions like hypermobile EDS, long COVID, MECFS, MCAS, et cetera, these are very time consuming things.

So you're often spending a lot of time relative to. Other people in a practice that might be seeing a variety of more acute problems and chronic problems. Also, we have lots of information about the connections between the different components of this trifecta, mast cell activation syndrome, POTS, and EDS, but we need much, much more data.

I recently started a newsletter on Substack and would love for you to subscribe to this newsletter. It is much easier to share complex topics via something like a newsletter. Okay, so now let's address the other part of Jane's question, mast cell activation syndrome approaches. First, I just want to remind you what mast cells are.

They're part of the immune system. They're [00:07:00] immune cells that live in the tissues and these cells are present where we interface with the environment. So they're present in the mucosa of like our nose and our throat and our sinuses. They are present in the gastrointestinal tract, in the airways, in the lungs.

They are also present in the uterus and the vagina and the skin. So any place where we interface with the environment. And they are there to respond to external threats. Now I want to share with you my evolution of understanding mast cell activation syndrome. I can remember when I first heard about mast cell activation syndrome I was cooking pasta in my kitchen and you might think well why in the heck would you remember specifically when you first learned about it?

So I had just met somebody who was starting a nonprofit for their disease. EDS in Wisconsin where I lived at that time and she was explaining to me about mast cell activation syndrome [00:08:00] and that most doctors knew about mastocytosis which is when you have an increased number of mast cells but that most doctors were not very familiar with mast cell activation syndrome which is when there's a normal number of mast cells but they released more mediators and they degranulate.

more easily, so they're more sensitive to things in the environment. And I remember her telling me this and telling me that it was just so much more common than what most people realized. And during that year, 2017, I attended multiple conferences on EDS, and of course there was discussion about mast cell activation syndrome as well, and that is also the same year that I opened my clinic.

Shortly before I opened my clinic in 2017, I was giving a talk at the local YMCA, and I was talking about chronic pain. There was a mom there who came up to me afterwards and asked me if I thought I could help her daughter. She proceeded to tell me about her [00:09:00] daughter who was diagnosed with hypermobile EDS and was having all kinds of unusual symptoms but the most worrisome one was that she was having symptoms of seizure type activity and she had had quite an extensive workup and was ultimately diagnosed with non epileptiform seizure disorder.

So the mom came up to me after this talk. and asked me if I thought I could help her daughter and I said, I don't know, I honestly hadn't even opened my clinic yet. I said to the mom, I don't know if I can help her or not, but I certainly am willing to try. They did end up scheduling an appointment and this was the second patient that I ever saw in my practice, Wisconsin Integrative Pain Specialist, which I started in Wisconsin in 2017.

As they were describing to me these episodes that, uh, this young lady had. I thought, well, I'm not exactly sure what could be causing this, but mast cells can do so many unusual things. [00:10:00] Could this be related to mast cell activation syndrome? So, I proceeded to prescribe her a number of different therapies that I had learned about for mast cell activation syndrome.

And she came back for her 30 day follow up, and I almost fell out of my chair. She said, I have not had a single episode since I saw you 30 days ago. And I was shocked. I was like, wow, it actually worked? I couldn't believe it. So that was my first case of really realizing how important mast cells are.

Later, I was preparing for a conference in New York on mast cell activation syndrome. This was in 2022, so obviously quite a few years later, and I'd been treating a lot of patients during that time, many of whom either had suspected or diagnosed mast cell activation syndrome. When I was preparing for this conference, I was asked to give a presentation on pain, and mast cells.

And in the preparation of this lecture, I read [00:11:00] lots and lots of journal articles and realized that mast cells are very heavily involved in the initiation and the maintenance of chronic pain. So ever since that 2022 mast cell activation syndrome conference, where I did this presentation, mast I started changing the way I approached patients and even if they seem to be on the lower end of the mast cell activation spectrum, because I really feel like it's a spectrum, it is also a syndrome, but I feel like there's really a significant spectrum.

So I'm going to. So, as I started treating more and more people using these mast cell directed therapies, I started getting better and better outcomes. So this really was such convincing evidence to me that mast cells really are heavily involved in this initiation and maintenance of persistent pain. So we know that one possible way that mast cells initiate and maintain pain is through peripheral sensitization.

When [00:12:00] mast cells degranulate, that leads to the production of pro inflammatory mediators, and some of these might sound familiar to you, because they include things like serotonin, tumor necrosis factor, nerve growth factor, histamine, and triptase. This results in the nociceptive neurons, or the pain sensing neurons, releasing what are called vasoactive neuropeptides.

And that leads to the recruitment of immune cells, including mast cells. And that leads to a positive feedback loop that leads to chronic pain. So the mast cells are degranulated, and that leads to the production of these pro inflammatory mediators. That results in the neurons, the pain sensing neurons, releasing these vasoactive peptides, which causes the recruitment of more immune cells, including mast cells.

So this positive feedback loop is one of the things that sensitizes the nervous system. to pain. [00:13:00] We also know that mast cells are probably involved in central sensitization. Mast cells degranulate in what's called first order excitatory synapses, where the communication occurs between the neuronal and non neuronal cells.

These nociceptors release these inflammatory factors that activate the second order neurons and non neuronal cells, including mast cells. This induces neuronal activation via Pro inflammatory cytokines and chemokines, and this includes again tumor necrosis factor and interleukin 1b and a variety of other components.

It also includes granular components like serotonin. So to answer your question, Jane, um, number one, The sharing piece is challenging, but a lot of us are trying to share more about mast cell activation syndrome. I believe that this question was posed before we released the first two newsletters on [00:14:00] Substack, both of which did address mast cell activation syndrome.

So, Jane, if you're listening, I hope you enjoyed the first two episodes of the Substack newsletter. Please let me know if you found that helpful. Because I do think that's going to be a really great way of sharing information with all of you. The next question I want to address is, can you share more tips on choosing a doctor?

We've talked about this a little bit on previous episodes, but I want to discuss it again. So first, we want to consider The years in practice and experience, you want to consider the pros and cons here. And of course I will be making some generalizations and remember that there are always exceptions to every rule.

So younger doctors that are recently out of training. There's some definite advantages. They're going to have newer knowledge. They will have just recently been in a teaching institution where there are lots of people doing exciting research projects and they will have [00:15:00] learned a lot of the really latest science.

They're also possibly less jaded or biased because they have not been out in practice as long. At the same time though, it's really important to remember that they have less clinical experience than older doctors. You learn a lot in school and you learn a lot in your residency. For anesthesiology, it's a total of 12 years of training post high school.

So four years of college, usually four years of medical school and four years of residency. And of course you learn a lot over those years. But there's no substitute for years and years of seeing patients and being the one ultimately responsible. I will never forget the first time that I was left alone in an operating room during my residency.

This is how you normally, you know, learn about doing anesthesiology. You spend time with different people and who are already anesthesiologists, of course, [00:16:00] and They are teaching you various different things. You already will have done a lot of book reading and learning that way. But the very, very first time that somebody says, okay, I'm going to leave for 15 minutes and come back and you're alone with this anesthetized, fully asleep patient on a ventilator, all the monitors.

Um, it is. It is. Terrifying. At least for me, it was terrifying. It is very, very different when you are the one responsible as compared to when you're in your training and you have other people you can turn to. So, you really need volume of patience and you need that experience. Doctors who have been practiced for longer, it can be very, very beneficial, especially if they're your surgeon.

Um, if they're your surgeon or your anesthesiologist, they likely will have had some complications and maybe that will have helped them to be more cautious when it comes to patient selection. They're going to have a different perspective because they will have worked with a lot of [00:17:00] different patients over the years.

They also might have had their own medical problems, so they may So, these are some of the things that you need to know to be able to relate to you more easily. Potential downside, though, is they might be more jaded because maybe they've had some negative experiences with patients, and they also might not be as up to date as the younger doctors.

I remember when I was realizing that I couldn't practice in the operating room anymore, I felt so sad because I felt like I was at the height of my career. I practiced for over 20 years, and over that period of time, I I got better and better at really being able to anticipate when a patient was getting into trouble.

So, while you're doing a general anesthetic on somebody, you know, you're monitoring their heart rate and their blood pressure and all kinds of different, you know, vital signs and you're increasing the gas or turning the gas down, you're giving, you know, more drugs, you're monitoring their breathing, etc.

And over time, you know, you get much better at [00:18:00] being able to anticipate subtle, subtle changes. So doctors who have more years of experience might be beneficial for certain things and younger doctors might be more beneficial for other things. The next question I want to address is, what if you are not having a great encounter or are worried that you're not going to have a good encounter?

So I have some suggestions. First, make small talk with the staff and find out how the day is going so you know what to expect. When you arrive at the clinic, you can start by talking to the person at the desk, and then you can talk to the person who puts you in the room. And you can find out from them.

If they're having a particularly busy day, if there's been a lot of emergencies, or if things are running relatively smoothly. Some days are going to run more smoothly and your care team is going to be in a better mood, but other days they will not be. And of course, these things kind of go hand in hand, and I think it's helpful just to have a sense as to how things are going that day.

If you're seeing someone that you [00:19:00] see regularly, you might be able to tell, but if you're just doing a one off appointment, you probably won't. So even before the appointment, ask people. How is your day going? Um, everyone you see, if you show an interest in them, that's going to help turn things into a more positive direction.

You want to give everyone the same benefit of the doubt that you want them to give you. So, start out positive and friendly. Um, it's okay to bring prior negative experiences into the appointment if it serves a purpose. And if you can do it in a friendly way and avoid prejudice. Blaming. So you could say something like, if I appear nervous, it is because things didn't go well with my last doctor.

When I first opened my practice, I didn't want to interrupt patients when they would tell me about their prior negative experiences, but I realize now that oftentimes we wasted a lot of time because they would spend so much time telling me about these prior negative experiences and that also often led us to [00:20:00] focus on the wrong things.

So if you have had prior negative experiences, which you probably do, in fact, you probably have a lot of prior negative experiences, there is a time and place to have that kind of conversation and I think that's really, really important. But it is possible that your doctor is They're probably not the right person to talk to about this, and you also don't want to waste precious time during your visit having this conversation, but you do want to find out who the appropriate person is to share your concerns and possibly have some kind of resolution.

If you can go into your appointment feeling more, um, If you're optimistic and having realistic expectations and being considerate, you're more likely to get what you want. Because doctors know that patient satisfaction is very low and they will try harder if they think that they have a chance of pleasing you.

But what if, what if your doctor is distracted, [00:21:00] distressed, or disinterested? Because if so, they're more likely to be dismissive. A couple things that you can do. One is you can let them know that you were not expecting a cure. A lot of times the reason why doctors are Distracted, distressed, or disinterested is because they feel like the problem is too big for them to handle.

You can let them know what the one thing is that is most important for you to know. So, what do you need to come out of that appointment with? So, for example, it might be that you really, really want a referral to a specific specialist. Or maybe there's a single lab test that is really, really important to you.

Or maybe you need them to listen and validate your concerns. Let them know that that's the thing that you really, really want to get out of the appointment. If needed, you can ask them, I think maybe we got off to a bad start. Can we start over? Also, you can let them know that this appointment really means a lot to you and that you really need them and you [00:22:00] need their help.

Of course, there's different ways that you can say this. So tone of voice matters a lot. Your nonverbal body language means a lot. So if you have your arms crossed, that's going to convey a very different tone than if you have your hands more open and if you're leaning forward. If you can change the tone of the session, that's great.

But if not, and if they're really having a bad day, then maybe you want to give them another chance. If you're not able to change the tone of that conversation, and if you feel like, no, this is a pretty typical day, then you might want to find someone else if you can. One patient who is a healthcare professional told me, you have to read the room.

And I think that is a good way of looking at it. And I would also say, he's just not that into you. I don't remember what movie that's from, but I think it's really, really important to get a sense of how interested the doctor is in helping you. Also, if you have a [00:23:00] PCP and they're discharging you because you are complex, let them know that you're not choosing to be complex.

If you are being discharged from the practice, ask them why, and ask them to write it in your notes. Maybe it's because they have nothing to offer. Maybe it's because you're too complex. If it's because you challenged them, they're probably not going to put that in the note. But at least if you have something in writing in the note, that might be helpful for when you try to get the next doctor.

I know there's a number of you that have been discharged from multiple practices and it can be really, really hard to find a doctor to help you. So that's why I'm suggesting that if you can, get it in writing and really find out the reason why. Because that will help you be able to choose somebody better.

To help you in the future, that's hopefully going to be a better fit. We're going to take a quick break and answer more questions 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 Syndrome community, patient to patient for the common good. [00:24:00] 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 edsguardians. org. 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. This is your podcast, so I want it to be as helpful as possible. In the description of this podcast is a link to a survey to collect your feedback. If you contribute, you will be eligible to receive an appreciation gift.

We will be selecting one lucky person for a bronze EduCoaching session valued at 275. Please [00:25:00] see the link for details.

The next question I want to address is, how can I describe my symptoms in a way that my doctor will take me seriously? First thing I want to point out is you might be describing things to your doctor that they have never experienced, and they probably also have never heard about them in school. So one example, if you have severe fatigue and post exertional malaise.

This is something that your doctor has maybe never experienced except for when they've had the flu. You might want to try to relate that to an experience that they have had, like if they've had the flu, because otherwise they might not know what this feels like. You might want to remind them how exhausted they likely were and how any exertion made them feel worse.

And you could share with them that this is how you feel on a regular basis, if that's the case. What can often be challenging, is that your doctor might be comparing you against the sickest case they have [00:26:00] ever seen of whatever the condition is that you think that you might have and you're seeking a diagnosis for.

So let's say, for example, you suspect that you might have upper cervical instability. And you actually are seeing a doctor who even knows what that is in the first place or understands that that can happen from a medical condition and not just from a car accident, for example. So let's say you're seeing a doctor and you're concerned that you have upper cervical instability and you start talking to them about upper cervical instability.

In their mind, they might be thinking of that worst case that they've ever seen of upper cervical instability, or they might be thinking of something that they read about upper cervical instability that was an extreme example. The same thing goes for whether it's CSF leak, tethered cord syndrome, ME, CFS, etc.

If they do treat patients with hypermobile EDS, hopefully they have seen a wide, wide spectrum of patients with hypermobile EDS so they know that some patients [00:27:00] are pretty highly functional and have mild symptoms, but other patients are extremely debilitated and are having multi systemic symptoms. It's really, really hard to understand symptoms that you have not experienced.

If you can recall a period that you did not have these symptoms, you can compare yourself then to how you are now. It might even help to bring a photo. You could bring a couple of photos, of course they're going to see how you are now, but you could bring a before and after photo. This has been really helpful for me with some of my patients who previously had been, you know, athletes or extremely active people.

I've had some people share with me pictures of them, you know, hiking, climbing, doing some very intense activities, um, which really helps me to understand where they're at and why it's so difficult to be dealing with these symptoms. Let them know that you will do anything. that is in your power to try to get as [00:28:00] close as you can to where you were before.

It might not be realistic to get back to that really super physically active person that you were if you were an athlete or a climber or something like that, but let them know that you really want to improve your functional capacity as much as possible. I know one of the things that people get really frustrated over is Is the prescription to, quote, exercise.

Often times people are given the advice to exercise without being given the specifics about how to do that. And a lot of people have tried exercise but instead of making them feel more energized it makes them feel worse. Let them know that you have tried exercising and that you need some tips for how to start moving more without making you feel worse.

Hopefully, they will be able to direct you to some resources that will be helpful for you. Again, remember, we are taught and shown extreme [00:29:00] examples in medical school, and so it is very important to remind the doctor that, um, well, it might not seem as significant to them. It's really, really significant to you.

And how they So, definitely describe how these symptoms are affecting you. You want to describe your symptoms as factually and clearly and quickly as possible, and don't put in unnecessary details. As they say in journalism, you don't want to bury the lead. It is not uncommon for people, for their first appointment with me, to share their symptoms.

There's tons and tons and tons of information and it can be like trying to find a needle in a haystack. So while we need lots of information, it can be very, very helpful to have that information organized. Now, you might need to have somebody help you with this because I know a lot of people have brain fog and other limitations.

But sometimes we're not ignoring your symptoms, but we're lost in a list that is too [00:30:00] long or includes what we feel are irrelevant details. You want me to practice describing your symptoms to your friends or your family in short sentences, maybe two or three minutes maximum, and definitely talk about why you are concerned and how this affects you.

You can always start with less information, but have more information readily available. So what I like is for people to have a one sheet. One page that contains the most critical information. If you had a really, really limited period of time, the most critical information would be on that one sheet. And I'm going to liken this to when I would be doing an emergency cesarean section.

So it was not uncommon, either an emergency cesarean section or somebody coming up from the cath lab that was crashing. So, meaning that Like, from the time you knew that you were going to be anesthetizing this person to the time that you're putting them to sleep is a matter of maybe five minutes. [00:31:00] So you have a room usually set up to do these emergency cases, so that part is taken care of, but you race over to the patient.

Um, area where this person is. So whether it's the OB suite or maybe it's in the cath lab and literally as you're walking with the, uh, the staff who have the person on a gurney while you're walking from the cath lab or the OB suite to the operating room, you're asking them the most critical questions.

You're looking at the airway. Because you want to know what the airway looks like, assuming that they're not already intubated. So you look, you have them open their mouth, you look in their throat, and you make sure that you're not going to run into any difficulty putting in the breathing tube. And then you also want to know what are their allergies, because that's obviously crucially important information.

And then you also want to know if they have a history of malignant hypothermia, which is a condition where people get high fevers during anesthesia. Those are kind of the three critical things that, that you ask. If you have time, you also kind of want to find out about their medical [00:32:00] problems. But in these kinds of situations, you usually don't have that kind of luxury.

So I want you to think about this in the same way, even though it's not a crisis situation like that. You probably only have Maybe 5, 7, 10 minutes with your doctor. Even if you have a longer period of time, let's say you have an hour with your doctor, that's still a lot to cover in an hour, because you likely have had problems for many, many years.

So, I suggest that people have a timeline, a bulleted timeline. A bullet point timeline that starts with the mom's pregnancy and if there was any problems with the delivery and then it could go into childhood and then like elementary school, high school, college, if you attended college, but break down like your twenties, your thirties, forties, depending on how old you are, but have everything.

Bullet point and keep it succinct. So that's one document you want to have. Only pull out that document if [00:33:00] it's asked for, though. Don't immediately start with that timeline document. The other document you want to have is a bullet point list of Symptoms, and that could be ideally by, uh, different systems in the body.

So you could have the musculoskeletal things grouped together and you could have like that category of, you know, musculoskeletal. And then you can have a bullet point of, you know, shoulder pain and shoulder subluxation, or you could have a bullet point for knee pain and, uh, dislocation of the patella.

Each thing just gets one bullet point. You can always elaborate and add more information, but I would start with having these documents that have the really, really short information. It's kind of like if you're writing a tweet, you start usually with something longer, and then you get it down shorter and shorter and shorter.

If you start with these other documents, it makes it easier then to create your one page or [00:34:00] one sheet. So you want to have the bullet point list of your timeline, you want to have the bullet point list of your symptoms, and then using those you can also create the one sheet that has your medical problems, your past surgeries, your medications, your allergies, things like that.

Now you might think, there's no way I can fit all that on one page. Again, try to think of it as a tweet. Try to get rid of things that are the least important and keep on there the absolute most important things. You also can probably condense certain things. So, for example, if you have allergies to multiple different antibiotics, you For the purpose of the one sheet, you can say allergy to multiple antibiotics.

There's going to be other places where you will put in the specific antibiotics that you're allergic to, but for the purposes of the one sheet, try to condense things. So [00:35:00] you could say, for example, if you have a lot of environmental allergies, you could say multiple environmental allergies. So keep that one sheet very, very simple.

It's very succinct and very clear and you can use boxes to try to delineate the different areas and it's actually pretty amazing how much you can fit on one piece of paper. I think it's very helpful to have this because then you can bring that into any appointment. You can update it periodically as information changes and also this is the kind of information that they want in an emergency.

So, let's say that you do have a medical crisis and the paramedics come to your home. On that one sheet or in an app on your phone, you could have the most critically important information. So there you would have your allergies, um, your most critically important medical problems, um, et cetera. If you're taking any medications that they should know about.

So say for example, you're taking insulin, they definitely want to know about that. If [00:36:00] naltrexone, it's important for them to know about that as well. Uh, you also want to have a binder and in your binder, you will have a The ability to find tests or other things that they want. So, you should have a section of all of your imaging results.

So, whether it's a chest x ray, MRI of the knee, MRI of the back, etc. Ideally, you don't inundate the person with all of that information up front, but you have it in a binder that you bring to the appointment. So, if they ask, what did that MRI show? You had an MRI of the brain. What did that show? Ideally, you can then pull it out and be able to show the person what that showed.

Now I understand that this might be very, very challenging, so you might need to have someone in your family help you with this project. You could also practice your description of your symptoms with your family and friends. Make sure to describe why you are concerned and how this affects you. And get feedback from your family and friends.

Ask them what they thought about [00:37:00] how you described your symptoms, and ask them for feedback on your one sheet, and your binder, and your timeline, and your symptoms, all of those different documents. Next, I want to talk about how we are taught to think about symptoms, and you can think about this in a who, what, where, and when format.

So, for example, you want to have the answers to these questions, where is the problem, does it stay in one place, or does it move? When did it start? How long does it last? And how often does it happen? Is it changing? Has it been getting worse or better? Or is it about the same? How severe is the symptom?

What makes it better? And what makes it worse? If you think ahead of time about the answers to those questions and or write the answers down to those questions, that will save a lot of time in the appointment. When you are writing down that bullet point list of symptoms by system, that is not the place to put the answers to these questions.

That document where you [00:38:00] are documenting symptoms by system is just going to be more of a list. But you can take another piece of paper and write down the answers to these questions for the most important two to three questions. These are the symptoms that you are wanting to discuss. So I would definitely write these answers down ahead of time so that you don't have to sit there and be hemming and hawing and trying to figure that out because some of these questions are hard to answer.

I know for me, when I go to the doctor, sometimes it's hard to say how often something happens because we're trying, we're trying to go on with our life, we're trying not to pay attention, but it's important for them to know. Okay, another important thing that you can do with your symptoms is look Check out some reliable websites to learn about possible explanations.

Now, you don't want to lead with this, but you want to have that information available because you could say, well, could it be this? So I strongly recommend that people do not label their symptoms, [00:39:00] that they go in reporting their symptoms, as I said earlier, as objectively as possible, very succinctly, very directly.

But if you have been able to do some research using reliable websites, If your doctor is kind of struggling to come up with an explanation, then you could say, I've done some research, could I tell you what I think it might be? I think that is a better approach than coming in saying to the doctor, I think I have blank, because I feel like Then, it's a lot harder for them to think about your symptoms in a more objective way and you don't want them to miss anything.

So sometimes, when you start out by labeling your symptoms, it leads us down a path that may or may not be the right path. Some websites that you might want to check out include NIH, CDC, WebMD, major teaching centers and there's a lot of non profits that have really, really excellent websites that can have helpful information.

So, when you [00:40:00] are When you're approaching your medical appointments, it's really, really important to have an attitude that is, um, friendly and positive. You want your doctor to feel like they do have a chance of helping you. A lot of people I know, because I've heard this from colleagues of mine and I've had this happen to me.

There are times where a person has had so many prior negative experiences that they go into an appointment with a brand new doctor already kind of judging them. And And we don't want the doctor to judge us, so it's important to not judge the doctor prematurely. You want to go into that appointment with an open mind and demonstrate a willingness to receive the information.

You want to demonstrate that you are wanting to work as a team, and I think that's more likely to then have them want to help you as a member of your team. One of the best things you can do as a patient is to have realistic expectations. [00:41:00] If you have realistic expectations, for example, you go into your appointment and you have one goal, and that goal is, You know, you want a referral or, or something like that.

And the doctor is able to give you that, then they're more likely to want to help you in the future because they know that they possibly can give you what it is that you want. Even if it means coming back for another appointment a few weeks later, let them know that you have realistic expectations, that you know that they're not going to cure you in the first appointment or the second appointment or probably even ever.

Let them know that they can Win and that they can help you and they will be so much more likely to try to help you. Okay, let's move on to our hypermobility hack for this episode. I want to address questions to ask your doctor and this is from the Society to Improve Diagnosis in Medicine and we will have a link in the show notes.

These are things that you want to ask your doctor in particular at the end of a session. [00:42:00] What is my diagnosis and what else could it be? I can't tell you how often people talk to me and they don't actually know what their diagnosis was. Make sure that you know what your diagnosis is. It may or may not be the same thing as the ICD 10 diagnosis that they're putting on your paperwork for insurance because oftentimes those are more general and we might not put something as specific on the paperwork for insurance purposes.

So ask, what is my diagnosis? When you are asking, what else could it be? You are asking them to expand on the differential diagnosis. So we're taught in medicine to think about the most likely diagnosis and then something called the differential diagnosis. The differential diagnosis is the other things that are most similar or present most similarly to that condition that is the diagnosis.

So ask what [00:43:00] else could it be? Next you can ask why do you think this is my diagnosis? Is it from test results? Is it from my physical exam? I think this would be very helpful for you to understand why it is that they're arriving at that diagnosis. Can you give me written information on my diagnosis? Do you have a pamphlet, a website, a non profit organization, a podcast, something where I can get more information in a written format, in a verbal format, something that will help me understand my diagnosis.

Can you explain the test or treatment you want me to have? What are the risks to the test or treatment you want me to have? It's often surprising to me that people are not, um, informed enough about possible risks for various different treatments and for various different tests. Um, some tests like a plain chest x ray or plain x ray of the hip, there's really not Any risk, but if you're having, for example, an [00:44:00] MRI with dye, then now you're having the risks of the dye, which can be quite significant.

Even if you don't have an immediate reaction, um, there is a thing called gadolinium toxicity, which is definitely understudied. So even with gadolinium, which is one of the newer, safer contrast dyes, there are still potential risks. So you want to ask about the risks and you want to ask What happens if I do nothing?

I feel like that's really important because you want to understand the risks and the benefits of the test and treatment that they're recommending to you. Also ask, when do I need to follow up with you? And what should I do if my symptoms worsen or change or I don't respond to treatment? So these are some things that I suggest that you ask at the end of your appointment.

Make sure you go into your appointment with a list of questions to ask during the appointment as well and let them know that you have some questions you want to ask at the end. So hopefully they will allow a little bit of time to address these questions. [00:45:00] Of course you can skip some of these questions if they address them during the appointment.

Alright, well that's it for today. I hope you found this helpful and I want to thank you for listening to this week's episode of the Bendy Bodies with the 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. If you would like to dig deeper, you can meet with me one on one. Please check out the available options on the services page of my website at hypermobilitymd. com. You can also find me at Jolinda Blue. Bluestein on Instagram, Facebook, TikTok, Twitter, or LinkedIn at HypermobilityMD.

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