Part 2: Systemic Failures and Hidden Diagnoses: Dr. Hillary Merry’s Advocacy

In Episode 5, Part 2 of Occult Awareness, Dr. Hillary Merry continues her deep dive into the critical issues of Craniocervical Instability (CCI) and systemic medical neglect. 

Part 2 of the conversation, Dr. Hillary Merry continues to uncover the hidden flaws in the medical system, focusing on how often critical tests are dismissed, and the consequences this has on patients with conditions like Craniocervical Instability (CCI). She highlights the systemic negligence that leads to misdiagnosis and even tragic outcomes, sharing stories of patients who have been failed by the healthcare system.

Key points discussed in this episode include:

• The pervasive game of telephone in medical record-keeping.
• The systemic issues cause doctors to avoid certain tests.
• Real-life impacts of dismissing patient symptoms.
• Dr. Merry’s personal motivation and advocacy work.

This eye-opening episode is a must-listen for anyone interested in understanding the deep-seated issues within our healthcare system and the importance of advocating for unheard voices.

Transcript

00:00:07:04 - 00:00:19:15
Speaker 1
Like I don't like to face these ugly truths about humanity because I'm someone who really doesn't like I give people the benefit of the doubt to a fault. So. And I always think people are trying their best. Yeah.

00:00:19:15 - 00:00:24:00
Speaker 1
I feel like they're less likely to do the test for certain conditions,

00:00:24:00 - 00:00:24:16
Speaker 2
like that.

00:00:24:16 - 00:00:39:00
Speaker 2
It is criminal because like people do pass away because of this. And they usually won't know like people. Yeah. So many people, you know, have already died because of this kind of negligence. And like them just not doing, an adequate job of being diagnostician.

00:00:56:15 - 00:01:03:15
Speaker 1
So welcome to Occult Awareness, the podcast that shines a light on the shadows of the unseen

00:01:03:15 - 00:01:05:10
Speaker 1
being our health care journeys.

00:01:05:10 - 00:01:06:11
Speaker 1
And I'm Amy.

00:01:06:11 - 00:01:15:08
Speaker 1
And each week we explore the twisting path and diagnosis challenges that faced by those conditions that don't show up easily.

00:01:15:08 - 00:01:17:08
Speaker 1
On a standard checkup

00:01:17:08 - 00:01:30:18
Speaker 1
from EDS to CCI and a beyond. We are here to share real stories and bring the insights of health professionals navigating the intricacies of how conditions

00:01:35:19 - 00:01:40:09
Speaker 1
why there is doctors that persuade you not to do some tests because you feel like.

00:01:40:11 - 00:01:41:02
Speaker 2
Yeah.

00:01:41:04 - 00:01:45:08
Speaker 1
I've done my job already and you still want to do more.

00:01:45:10 - 00:01:56:07
Speaker 2
It does. Yeah. It's actually, and it's not even just the individuals that seem to have that attitude, but it's like the whole, systems that have that attitude.

00:01:56:07 - 00:02:13:07
Speaker 2
frustrating. It's frustrating that they continually, like, double down behind each other, but it's reminiscent of the way that administration works at like, Cornell as well, where I went to that school, because I noticed that same kind of like very irrational supporting of the last statement that was made on this issue.

00:02:13:07 - 00:02:41:13
Speaker 2
You know, even if it seemed that we've had an insightful conversation like, I'll get an email on this issue that's like, well, we feel that when they said this, that this is, you know, and this is like totally different and not related to my medical. Well, it's not related to my medical concerns, but it was related to like, me being allowed to, take time, but like take, a test early in that school, like where they allowed another classmate to and try to tell me my situation was different and I, you know, I shouldn't be allowed to.

00:02:41:15 - 00:03:02:16
Speaker 2
And that's something I won't let go. Like I'm not. There's little things that, like, show you what a place or person really is, who they really are, or like what they will really do when faced with a somewhat challenging decision which like this wasn't this is like a weekly quiz that, you know, I, I wanted to miss so that I could go and visit my grandmother, who was declining with Alzheimer's.

00:03:02:16 - 00:03:08:23
Speaker 2
And like, you know, this was like the last visit where she remembered me. So I'm glad that I went back a zero if I take a year off.

00:03:08:23 - 00:03:32:21
Speaker 2
it's the same with, I think, some of these big academic medical institutions where if you do have even very real complaints about blatant abuse and you try to complain about it through the like, avenues that are allowed, you know, they're just going to defend themselves and say that they didn't do that or that they did their best because of this or that, or because, you know, I love how they always fall back on the fact that, like, your condition is so rare

00:03:32:21 - 00:03:42:24
Speaker 2
or so severe of a presentation that they have never seen, you know, even when I like no other patients that go to that same doctor or same institution, you know, who are just as severe.

00:03:43:01 - 00:03:55:06
Speaker 1
Yeah. This makes you really start wondering, like, why don't we really have this, this kind of like approach of where where they complain about certain things, like, we can be part of it.

00:03:55:06 - 00:04:17:24
Speaker 1
why can't we really be part of it when, you know, we send out the complaint form and request, right, for issues? Yeah, but they get to define themselves. But we never get to show up for ourselves, actually, to talk, you know what I mean? Like, with the evidence like that, there's no way we can only have like, five lines to write whatever outcome.

00:04:17:24 - 00:04:21:01
Speaker 1
Right? But usually we need the ten.

00:04:21:03 - 00:04:46:06
Speaker 2
Yeah. At least. Yeah. It's, there's a lot of different avenues I'm trying to, like, keep our stories quiet and silent, and I think, that's why this, this type of podcast, in this format of being able to, like, talk about it from, you know, our bed or whatever, it's very helpful because, like those barriers, those little things that, you know, to able bodied people like would not prevent them from doing a task.

00:04:46:10 - 00:05:13:07
Speaker 2
They do prevent us from doing a task. And like my point is, that's by design, you know, like, for example, the state website, to get by the Department of Health Services. you know, I live in Maryland, so, those services, those websites, that website is definitely designed to keep people out or to keep people slow to keep it so that things are not going through fast, you know,

00:05:13:09 - 00:05:14:12
Speaker 1
like that.

00:05:14:14 - 00:05:35:13
Speaker 2
Yeah. Like, that's just it's not even just that site. It's like any site that relates to trying to give aid from the government is going to be very slow. You know, Social Security has ours now. So, like, you can't even check your Social Security portal at night like that website closes. I can't even make this up. Like, I freaked out when I noticed this for the first time.

00:05:35:15 - 00:05:54:00
Speaker 2
because, like, yeah, like, yeah. It's why I don't always have the best working hours during the day. And so sometimes I do find myself checking things at, like, weird hours a night. because that's the only time I can get it done and, like, Yeah. No, you can't do that for Social Security. So I'll just add that to the list of things that happen to have to have annoying business hours, you know?

00:05:54:02 - 00:06:18:18
Speaker 1
Yeah. Well, it's like, this is insane. It's for disability. but then they made it, like, so inaccessible for us. Yep. We able to. Yeah, especially I know a lot of people who, like, don't was similar conditions like having issues with, like lights or reading computer. yeah, I have that. Yeah. Well so yes. Thank you.

00:06:18:20 - 00:06:36:01
Speaker 2
Yeah, yeah I have that issue like the light thing like migraines are another issue that like, I have probably always had from the age of, you know, a little child, but like, I didn't I saw like some of the way that I'm determined whether or not I think I have something has to do with like how affected I am by it.

00:06:36:01 - 00:06:54:03
Speaker 2
Like, you know, how you go in for certain conditions and they think that like, because you're not in enough pain. It can't be that, like I think that because migraines, like I saw my mom and like other people who have them, like really being debilitated by them, I just thought for my whole life that, sorry.

00:06:54:05 - 00:07:15:17
Speaker 2
I just thought my whole life that I couldn't have migraines, but I didn't have migraines because I know that they're just headaches. Like it's because they don't debilitate me. Even though. Yeah, like, they were always the kind where, like, when I go upstairs or, like, you know, possibly it would get worse, like, like made it, you know, worse, like all of these things, that kind of make more sense now.

00:07:15:17 - 00:07:16:10
Speaker 2
But,

00:07:16:10 - 00:07:24:02
Speaker 2
Yeah. Like, it's I just thought I thought migraines is something that's, like, really debilitating. So it can't be when I have.

00:07:24:04 - 00:07:28:14
Speaker 1
Or like, you know, there's a lot of, different type of headache now.

00:07:28:16 - 00:07:52:05
Speaker 2
Right? Yeah. Yeah. Like, it's like, for me, like migraine in. Yeah. The understanding even around migraines has shifted a lot like which was starting to happen when I was in college because I studied neuroscience and psych, in college, like, they were starting to realize that migraines are, very similar to, like, seizures. they in a lot of ways are small seizures.

00:07:52:07 - 00:08:13:09
Speaker 2
and that like kind of evolved into, like it's kind of reminds me of, like the autism, like really understanding that's happened and happening. Yeah. like, you know, I have a family member who has, like, pretty severe autism and like, always did from a young age, you know, like had epilepsy as well and stuff. and that's what I used to think was autism.

00:08:13:09 - 00:08:32:07
Speaker 2
Right. Like, I would never considered that like I had autism until, you know, the last couple of years, like, my providers like, mentioned it, but, or when I asked about it, I think and they agreed that they think that's the case. But as an adult, obviously you can't just like go get a diagnosis for autism. that's another thing.

00:08:32:08 - 00:08:52:14
Speaker 2
It's not covered for adults. It's only covered for children. But if you were someone who wasn't diagnosed as a child due to the negligence of the system, they still won't cover it as an adult, even though there's services that, like I kind of need and can really use right now, that, you know, I can't access them getting diagnosed as like $5,000.

00:08:52:14 - 00:09:19:15
Speaker 1
just hear something about similar about that on TikTok. It was like someone was like, oh, please give me the money. Like $5,000. You know, get that autism like, you know, diagnosed. So yeah I actually read something about the factor that the brain stem issues, whatever is small damages or compression or whatever, that has a bigger chance to have autism.

00:09:19:17 - 00:09:38:00
Speaker 2
Yeah. Yeah. I think that our understanding around autism is like, just starting to open up to what it maybe really will be, you know, understood as in maybe 20 or 30 years, but,

00:09:40:06 - 00:09:59:17
Speaker 2
It's a big part of, like. Yeah, I think it's something that we don't have the full picture on it. I don't even like, like the fact that certain condition, like brainstem, like, damage could lead to this. I think that might be the case. It might be correlated with that or might even be causal. But, like, I, I'm not sure.

00:09:59:19 - 00:10:22:15
Speaker 2
Like, the lens that I'm seeing it through is through like a non pathologic lens right now as of recently. Like I feel like autism isn't necessarily the reason autism is a disability is because we're in a capitalist society. You know, let me put it that way. It wouldn't be disabling if we were, you know, in a society that wasn't structured in such a way that like, you know, makes us a commodity, like we have to brand ourselves.

00:10:22:15 - 00:10:41:15
Speaker 2
We have to create a like when that started happening in this country, like, I got very uncomfortable. I still don't like the idea that I have to brand myself or be like, I have to pick a phrase or like a name that will be my brand, or like a mission. Like they'll be my mission, like as a person, you know, like that's something that you do for a business.

00:10:41:17 - 00:10:55:16
Speaker 2
and I think that some of this whole movement to, like, market yourself and brand yourself and everything is having like a weird impact that most, you know, that most things like have only, you know, like something starts. We don't always like foresee the downstream effects of like, you know, phones or internet or anything, you know, even anything.

00:10:55:16 - 00:11:17:18
Speaker 2
It's just like an advancement. Right. But I think that some of the downstream effects of this, like branding is, like a sort of it's making people, one note, like it's I think it's going to make it even harder to see people as multi-dimensional beings that are, you know, capable of change because it's like, oh, well, what if, you know, this was your mission before?

00:11:17:18 - 00:11:49:06
Speaker 2
And now based on this new information, you have like a new mission? you know, in a way, I think it's like preparing ourselves into boxes, into corners a little bit more. and I don't want to do that. Like, I'm so averse to being constrained in that, in that way that I don't even like, it's, like, I don't know, I just have so many ideas and there's so many things that I've done in life at different stages where I thought that was the thing that defined me, that or whatever, like, and I am someone who I can commit to something for a long time, but I, I don't.

00:11:49:08 - 00:12:06:24
Speaker 2
One thing I enjoy about where I am now is like being able to not identify as all the identities that I had, and like it is negative, like it wasn't negative at first. It's hard. especially because I had like just reached a milestone, you know, of earning a degree I worked on for like, a really long time.

00:12:07:01 - 00:12:33:08
Speaker 2
and. Yeah. And yet still, it feels good to not have to be that not have to be a veterinarian, like, in all circles. And to have that be a primary identity of mine or to not even have, like, being smart as an identity of mine, like having these cognitive issues like get worse, like there are definitely and I think just like the word smart and like intelligent, all of that is like difficult to pin down at, at the, you know, at the least.

00:12:33:10 - 00:12:58:01
Speaker 1
But yeah, I said, yeah, I did like a lot of branding right now, with people that. Yeah, like you said, putting the boxes, but, yeah, we, we can literally to be anything we want and right really have to be in a way like, you know, if you don't want to do, any kind of medicine, it and you do something else and it's totally fine.

00:12:58:01 - 00:13:05:00
Speaker 1
Like, you know, it's no issue to you to do that. And or you can do both. Yeah. At the same time.

00:13:05:02 - 00:13:21:01
Speaker 2
Yeah. I think that's what I'm trying to do, just like zoom out and see all the things that, maybe like, used to be identities and things that I rediscovered that one of the things I stopped doing or I, I told myself I stopped liking because, like, I got symptomatic during it and there was never an explanation for that.

00:13:21:01 - 00:13:34:02
Speaker 2
And so I just said, well, I don't like it because I don't want to have to keep being asked to do it, you know? Yeah, like shopping, going in a hot tub, going anywhere hot, going hiking, you know, there's a lot that, that I gave up over the years. But yeah.

00:13:34:04 - 00:14:11:22
Speaker 1
I, I know recently like, this might be a little bit harder, conversation into the deep end that I know that you were feel a little bit, lost or feeling hopeless, you know, like, I don't know what went on. but with whatever is going on with the, medical system and the people that who wanted to just take the easy way out and did it, did it really affect your mental health in a sense, like recently was the diagnostics stuff.

00:14:11:22 - 00:14:18:18
Speaker 1
And then like with seeking for more treatment, basically options, opinions?

00:14:18:20 - 00:14:21:02
Speaker 2
Yeah.

00:14:21:04 - 00:14:23:21
Speaker 1
the way that you don't believe yourself or, you know, like.

00:14:23:23 - 00:15:04:08
Speaker 2
Yeah, I think that it, me not believing myself has definitely become less, but, it still happens, like, maybe like one today. But it's funny now. It's like kind of laughable. I, I have immediate evidence to the contrary. You know what I mean? It's not like, well, here I am, like, doing surgery. Like, clearly I'm still functioning, you know, like, it's not like back when I had no functionality and like, I could dress myself without help and things like that, you know, it's like, now, like, for me, what's been really hard with, like, hopelessness and,

00:15:04:10 - 00:15:08:07
Speaker 2
Is, well, it's been hard and it's also been helpful, like.

00:15:08:13 - 00:15:17:07
Speaker 2
but, basically like, my, will to live has, like, improved.

00:15:17:07 - 00:15:34:03
Speaker 2
when I kind of, like, internalize the fact that the medical system that we're in. Like, in the healthcare system overall, like, doesn't really want us to live like it wants us to cave in to the desire to, you know, exit the world.

00:15:34:03 - 00:15:59:10
Speaker 2
Like I think that it's always been like it was helpful for me in, in, like fighting harder to recover from what I thought was an eating disorder when I thought people were rooting against me. You know, I'm one of those people, I guess, who wants to like, make people wrong? No, no, I just want to like it makes me a little more motivated to to have people think I can't do something, or even when I think I can't do something.

00:15:59:12 - 00:16:27:18
Speaker 2
so yeah, I think that now, the voice that's allowing me to, like, continue and those moments that I didn't really have as strongly before, but it's like because, you know, the more evidence that I get that, you know, the systems that are supposed to be in place to serve us really aren't built to serve us. Like every time that, you know, I see another post of a friend of mine getting left by an Uber driver who has an accessible van and yet seems to not want to pick up access.

00:16:27:18 - 00:16:43:20
Speaker 2
You know, people who need that. but that happens. You know, one of my close friends in undergrad had a powerchair and like at the time, I had no idea I was ever going to be part of the disabled community or that I was at the time. Right. But he, yeah, it was constantly encounter like issues where I was trying to go out to the bars and stuff.

00:16:43:20 - 00:17:02:15
Speaker 2
Right. So we would check where was accessible, but then like at the end of the night, it was really hard to find rides, like someone would have to stay with her and wait because like, so many rides would not come. And, you know, I think maybe the issues are a little better because back then it was cabs that because Uber, didn't exist yet or wasn't in Madison yet.

00:17:04:04 - 00:17:06:14
Speaker 1
It's not in Texas, you know, accessible.

00:17:06:19 - 00:17:08:04
Speaker 2
Wait, really?

00:17:08:06 - 00:17:12:05
Speaker 1
No. Like, I mean, it's a huge amount of money to pay when.

00:17:12:07 - 00:17:15:22
Speaker 2
Uber isn't in Texas. Or you mean they don't have accessible plans, like.

00:17:15:24 - 00:17:21:20
Speaker 1
Yeah, they do have Uber. They do have left, but they don't have accessible van.

00:17:21:22 - 00:17:47:11
Speaker 2
Got it. Because like back then it was the cab companies. So we would just, you know, we'd call cabs. and they had an accessible line that you like, one of the, one of the three cab companies in Madison. And I was like, I haven't thought about this in detail in a while, but like, one of the three cab companies had accessible vans, but you know, being as there probably weren't very many of them, maybe there was like one or 2 or 3, I don't know.

00:17:47:13 - 00:18:11:00
Speaker 2
But like it was very it was always a really long wait to get them. And a lot of the time they just like didn't come. So yeah. Yeah. I mean, moments are hopeless. Like, there's definitely a lot of moments where I like, don't, I don't feel like I have the strength to withstand the things that are most likely in my future.

00:18:11:02 - 00:18:31:24
Speaker 2
Like, I don't have much hope anymore of, like. I mean, before I had the overarching, like, EDS diagnosis and everything. Every time I would have a medical issue come up, I thought, I'll just get through this. And then like, hopefully I can just like not go to the doctor again till I'm 50, you know, or like not have to have anything major for a long time because I'm going to do all the things right and I'm going to make it better this time, right?

00:18:32:01 - 00:18:54:06
Speaker 2
Yeah. I don't really have that anymore. and so in certain moments, it's really hard to, like, think about the fact that I'm going to have to keep interacting with the healthcare system so much. and probably like more in a way. I mean, I hope to fix some of the major issues and like, you know, maybe, but I myself a couple decades of, like, less health care exposure.

00:18:54:06 - 00:19:00:20
Speaker 2
But, those are hopeful. Those times. Those are the that's the thought that really gets me.

00:19:00:22 - 00:19:02:08
Speaker 1
Yeah.

00:19:02:10 - 00:19:14:08
Speaker 2
Is just thinking like, this is the best it will ever be kind of thing that like, it'll continue to get like my condition will continue to worsen. A system that is ill equipped to handle patients like us.

00:19:14:10 - 00:19:22:23
Speaker 1
Yeah. I mean at least you're quite close to the answer. Right. And I know that I hope so, yeah I, I've.

00:19:22:23 - 00:19:42:11
Speaker 2
Felt that way before. You know I think that it's also hard because a lot of these symptoms are vague and have a lot of possible explanations, many of which maybe do partially contribute all to the same issue. You know, like I know that I have food triggers, but I know that's not the only thing. and I know that, like, you know.

00:19:42:11 - 00:19:59:17
Speaker 2
So I think Marcus is an element of it. And then like, there's, like there's all these different issues that can all produce, like, almost identical symptoms. So for me, the head thing, like knowing that using the color helps the symptoms, like that's helpful. That's a diagnostic in itself. And I think in human medicine they don't use those types of diagnostics.

00:19:59:19 - 00:20:18:09
Speaker 2
Empirical evidence like as like when the treatment has low risk you can use it as the diagnostic if response to the treatment proves your thing, you know, it's like a cheap and dirty diagnostic. I mean, if the treatment is like surgery, probably not. Right. But like, I mean, sometimes you do do an explore. so it.

00:20:18:11 - 00:20:26:03
Speaker 1
Did do someone actually, gave you the prescription for the customized color. Yeah.

00:20:26:04 - 00:20:53:12
Speaker 2
For this. Yeah, yeah. My my my pain management doctor did, and she helped me and kind of get some more, like, therapies for the, like, pain and stuff. that is associated with it. But I'm really hoping I'm really, really hopeful for a cure. Like something that fixes an issue, you know, that's big enough that either I can reduce my meds to, like, a couple or I can, like, come off of a lot of them, you know?

00:20:54:23 - 00:21:20:04
Speaker 1
Yeah, I think, I think that that that is really good. like, almost like wrapping up thoughts because I, I'm glad that, you know, you still feel hope for for actually finding the answers and, some good treatments. I mean, hopefully the surgery isn't going to be the only options. And for you that, you know, conservative measures, it can also help a lot of these symptoms.

00:21:20:06 - 00:21:28:21
Speaker 1
And, sometimes can heal ligaments, you know, like, and then you're able to get stronger and yeah.

00:21:28:23 - 00:21:29:13
Speaker 2
You know.

00:21:29:15 - 00:21:46:03
Speaker 1
Essentially really getting free from it, the whole thing. But I feel like it's just the whole entire journey to really even know that you have this, instability issue instead of like, psychological issue is really big difference, right?

00:21:46:03 - 00:22:04:10
Speaker 2
Yeah. I mean, even this is like new and honestly has a lot to do with, like, you and like other people, like, am I someone that I see in this area, who's in her 60s as a psychologist? Like, who has it as well, who's helped me kind of like navigate these common issues. You know, she was able to recognize better than any of my doctors that, oh, those issues sound like CCI.

00:22:04:10 - 00:22:19:17
Speaker 2
Like, does it help when you turn your head down? And I was like, oh my God, yeah, like so much. And so for like a couple weeks I just had like a towel and I was like holding my head in a down position because it's very hard to remember to do that. Yeah. Like, you know, like when you're doing other things.

00:22:19:19 - 00:22:31:06
Speaker 2
and then I would just find myself, like, about to pass out or having really bad pain and I'm like, oh my God, why is that so bad? And I'm like, oh yeah. And then I would just like rotate my head down or lay down and rotate it. And I was like, oh, like, it makes it immediately a lot better.

00:22:31:06 - 00:22:41:08
Speaker 2
Like I can feel almost the way it feels when you're kneeling and your circulation is cut off, and then you stand back up and you can feel the reperfusion. Yeah, yeah, yeah, I feel it. Yeah.

00:22:41:10 - 00:22:54:14
Speaker 1
I think I, I'm recognizing it in the opposite way. Like I said, every time people like put me to the rest. And so in your style I hyperextended and I suddenly start like not fainting but in response. Right.

00:22:54:16 - 00:22:58:24
Speaker 2
Yeah. Yeah yeah. And that yes, that was yeah.

00:22:58:24 - 00:23:06:07
Speaker 1
I mean it is really scary because in response responsive state is what happened. Was the brainstem literally having everything cut off right.

00:23:06:09 - 00:23:08:02
Speaker 2
Yeah. Yeah.

00:23:08:04 - 00:23:10:24
Speaker 1
You don't have that kind of signal going through.

00:23:11:01 - 00:23:29:08
Speaker 2
And right. So people need to it's hard to communicate in those moments. Like that's what I've found is hard. Like I even had, my hospitalist come in with the resident, like when I was at my when I was admitted last time and, like, find me, I had been left in a wheelchair by the transport guy, and he didn't put me back in my bed.

00:23:29:08 - 00:23:41:15
Speaker 2
He just, like, left me there. And I was already kind of passing out on the way back. So he like like I don't really even like remember him leaving me there. I kind of do. But I know that my doctor came in and found me there in the chair, just like with my head, just like against my chest.

00:23:41:15 - 00:23:56:11
Speaker 2
Like I couldn't pull that. Right. And that's often how I pass out. If I go out in my I don't have my power chair yet. So that's what happens. And they didn't recognize that I was like, in I'm not good position like they thought I was napping.

00:23:56:13 - 00:24:01:00
Speaker 1
I think my neurosurgeon would be like freaked out at that position. Like if you.

00:24:01:02 - 00:24:19:11
Speaker 2
Yes, any doctor should any human should like people don't nap that way. You know what I mean? Like, people don't nap. Like, if you find your your mom, you know, you'd be like, hey, can you, you know, maybe let's find you a comfortable position. But instead they were like, he started trying to talk to me about something like, you know, like as if I was in a comfortable position.

00:24:19:11 - 00:24:31:24
Speaker 2
I remember hearing that and being like, hey, I mean, how I was trying to communicate that I needed some fucking help. And yeah, apparently that didn't get across. And they just like I remember him saying, like, well, do you want to just come back later so you can rest? And I couldn't say anything. And he was like, okay, we'll come back later.

00:24:31:24 - 00:24:46:01
Speaker 2
And I remember trying to be like, please get a nurse. Like somehow. And like they didn't, they left and never came back. Nobody came back, I went up, I tried to crawl back to bed eventually, and someone came and found me on the floor. One of the physical therapists who was pregnant.

00:24:46:03 - 00:25:00:01
Speaker 1
Who's. Yeah. Yeah. I mean, especially like if you actually be successfully going to the bed. Right. And then. Yeah, later on, if you mention those whole thing, like they lay you out, but you're fine right now.

00:25:00:03 - 00:25:16:20
Speaker 2
Exactly. Like, because, I mean, they came back in the room like once they once, you know, the physical therapist found me then, you know, there's like six people in the room, like, immediately. And then they put me back on the bed and the doctors come in and act all concerned. And I do remember being mad, being like, where what what were you doing ten minutes ago when you were in here?

00:25:16:23 - 00:25:29:20
Speaker 2
What was that like? What did you think I was doing? I really grilled them on it because they were like, well, I didn't know that was what you look like when you're like, I didn't know that was happening. And I'm like, you should not let anyone ever nap like that. What are you talking about? You know, like that.

00:25:29:22 - 00:25:34:21
Speaker 2
Even if I was, like, just napping, that's bad for my neck. Like anyone's neck. Wow.

00:25:34:24 - 00:25:45:22
Speaker 1
So you nap this way? I know now the fainted this way. I think in the opposite way. Two hours and no one really come in. Even with your head back?

00:25:45:24 - 00:25:48:03
Speaker 2
Yeah. Head back.

00:25:48:05 - 00:25:53:23
Speaker 1
that was right before I started having the my right side of, like, spastic movement.

00:25:54:00 - 00:25:55:09
Speaker 2
Yeah. Spastic process?

00:25:55:10 - 00:25:59:21
Speaker 1
Yeah. It kind of, abnormal movement.

00:25:59:23 - 00:26:16:18
Speaker 2
it's spastic paralysis is what it's called. There's like two types of paralysis when you get into talking about, loss of motor function, there's flaccid and there's, spastic paralysis. It has to do with whether it's an upper or lower motor neuron issue. Tetanus is a good example of spastic. And botulism is a good example of flaccid.

00:26:16:18 - 00:26:21:01
Speaker 2
And both come from old diseases plus dirty old bacteria. So yeah.

00:26:21:02 - 00:26:46:05
Speaker 1
Yeah. So with without these things that, you know, like how was the diagnostic tests performed in clinic, where are the neurologists? I'm kind of curious about it because. Yeah. So I think this is a this is the one thing that I, I keep, I wanted to ask everyone about. one is also raise awareness of like what exactly happening in the clinic at that people.

00:26:46:09 - 00:27:00:12
Speaker 1
Yeah here are doing this there. But also the other thing is like do you feel like they are doing that accurately? Everyone like, well, on the standard form, do.

00:27:00:14 - 00:27:02:24
Speaker 2
You mean,

00:27:03:01 - 00:27:04:03
Speaker 1
Like do I.

00:27:04:03 - 00:27:07:00
Speaker 2
Feel like the neuro exam or like.

00:27:07:02 - 00:27:12:03
Speaker 1
You're getting pretty much neuro exam? So that shows like up on model neuron signs and, you know.

00:27:12:03 - 00:27:12:13
Speaker 2
Right, right.

00:27:12:13 - 00:27:33:04
Speaker 1
Right now we have. So this is a big structure like right here. Yeah we have imaging or testing like you know blood test things like that. it's measurable right. And then or maybe still subjective. Where's the radiologist. But then we have also the signs and symptoms. Right.

00:27:33:06 - 00:27:36:03
Speaker 2
Yeah. So I'm sorry. Go ahead. Yeah. No no.

00:27:36:03 - 00:27:38:01
Speaker 1
No no.

00:27:38:03 - 00:28:05:17
Speaker 2
I think are you asking about like, how they like they are not very good at incorporating history or the and like beyond that you know, because first that's an issue because any internal medicine field which neurology comes off of internal medicine same as like cardiology and rheumatology and everything. But they need to be impeccable history takers. A clinical interview is, you know, what it was supposed to be called in human medicine, and they're supposed to be really good at doing that because that's a huge part of the picture, you know, surgically.

00:28:05:17 - 00:28:34:21
Speaker 2
Like you're kind of working with what you have right there because you're going to physically go change it. But, you know, and you're more working with imaging and, subjective measures like that, but with internal medicine, like you are dealing with, most of the information gathered is going to be from what people tell you. you know, like at least in Batmen, because we don't get to run all the tests we want to, and for some diseases, you know, there's like some finding that proof that it makes it like, the highly the most likely thing or whatever.

00:28:34:21 - 00:29:07:00
Speaker 2
But, but yeah, like, there's definitely areas where, the like the clinical interview and the history taking process is incredibly important. And I think that I guess the point is, I think I don't think neuro does a very good job of it. I think that the ones like the neurologists that I've seen when I've been in patient again, it has a very much a feeling of like wanting to get me off their desk, you know, like they, you know, kind of don't want to be here.

00:29:07:00 - 00:29:22:18
Speaker 2
You know, they feel like my issues are really mild or a lot of the times they say, like what? You know, maybe this thing is caused by something else, like a medication. So let's wait for you to come on. So that's cool. All of my issues that I had were like, I mean, it's been a long decline, right?

00:29:22:18 - 00:29:44:16
Speaker 2
But like, there was a lot of I was having to have dysphagia and like, choking a lot more and then also having speech issues like facial tics and like problems saying certain sounds and words. I'm usually really fast talker like, even the way I'm talking now is a lot slower than I used to talk, because I don't want my face to just be, like, twitching out all the time, which it does if I try to talk at my normal pace now.

00:29:44:18 - 00:30:09:16
Speaker 2
So I find I made a lot of like, changes to like the way I do some of that stuff. But all of that is really informed by the speech language pathologist that I've seen you know, they do like, so much more than I ever thought, first of all. But also, like Thunder ologist that I saw, they've always kind of just been like, yeah, I don't know, like, your changes are maybe really subtle.

00:30:09:16 - 00:30:35:24
Speaker 2
Like, I don't notice anything, right now. And then there's certain elements of the exam that, like, I really feel should be standard that aren't such as, like the strength testing is like, incredibly unstandardized in a way that, like, is really intense. Like, I, it's and it's not it doesn't even always correlate with like, someone's, like their size or like, you know, their strength.

00:30:36:01 - 00:30:54:15
Speaker 2
It would seem it's kind of like, I feel like a lot of the time the neurologists don't test my strength very hard. Like, they're like, they're like, here, like, don't let me push, but they're like, not pushing very hard, like at all. Yeah. It's almost like they have a problem, you know, I'm like, but it's more like they're not trying to detect something, you know what I mean?

00:30:54:17 - 00:31:13:01
Speaker 2
it's like that same thing that I was saying with the tests, except these tests, because everything you do is a test. Like even your clinical exam, it's supposed to help you rule in and out certain things. Right? And when they do that test, and they are the one who gets to say the outcome, like, right, it's not an image, not a blood test.

00:31:13:01 - 00:31:26:09
Speaker 2
Like they're the one who gets to say, if you have enough strength. So they get to just immediately, you know, passing on that test so they don't have to deal with it. And it's subjective enough that like, they can say they didn't like I've had people do those straight tests in the same day and get different numbers, like within hours of each other.

00:31:26:11 - 00:31:27:16
Speaker 2
So yeah.

00:31:27:18 - 00:31:47:09
Speaker 1
I mean, even the even the neurosurgeons, sometimes they look at you like, oh, you can still lift your arm like this. And they're like, oh, I used to have to just like, you know, I sort of like they almost like one of those the, one of those followers that who just look at your video and say, oh, yeah, she still have strength.

00:31:47:11 - 00:31:50:09
Speaker 2
Oh, right. Yes, yes.

00:31:50:11 - 00:32:17:10
Speaker 1
But I can diagnose. Yeah. But particularly like really want to mention this like, you know, this is a one of my idea, future videos. But like, I definitely feel this is ridiculous. I don't have, like, a feather. Something. But this is how they do Huffman's sign, which is way. Oh, yeah. You don't have any Huffman sign. That makes sense when they do it.

00:32:17:10 - 00:32:34:10
Speaker 1
Really? They do it like super, super light on your fingertips. And this isn't going to cause any reflex, abnormal reflex. So. Right. Real one actually. And you had to pluck hard and every single time it works.

00:32:34:12 - 00:32:34:16
Speaker 2
yeah.

00:32:34:16 - 00:32:38:19
Speaker 1
We all have the positive sign, but they don't. Yeah.

00:32:38:21 - 00:33:00:22
Speaker 2
It's interesting that you say these things because it reminds me a lot of just the difference between, like, me trying to do a neuro exam on a German shepherd, right? And a neurologist trying to do a neuro exam on a German shepherd or even a surgeon, orthopedic surgeon, because a lot of the time with ortho, they have to because the dog can't tell us I'm limping on it because it's in pain versus I'm learning on it cause I can't feel or I'm not weight bearing because I can't feel right.

00:33:00:22 - 00:33:27:14
Speaker 2
So we have to suss out those issues a lot more than, in human medicine or from like further back and, like, I'm just not strong enough to do a good neuro exam on a large dog. And I've known that since I became a vet. but because of that, like, when I was trying to learn certain signs like that, like, there's different, you know, we have different ones for, for, like, dogs and cats and horses and everything.

00:33:27:14 - 00:33:53:10
Speaker 2
But yeah, some of them, like, I can't do them. I had to find like modifications or maybe a different way to interview that same system. because, like, it just wasn't going to be like, the biggest one. I think of it like, dogs tear their ACL all the time there. We call it a cranial cruciate ligament, but it there's a certain, it's called cranial draw when you try to, like, move the tibia relative to the femur to see if there's laxity or there shouldn't be, shouldn't be able to do that.

00:33:53:12 - 00:34:12:21
Speaker 2
I'm not, like, strong enough to grip those two areas of the bone and to like, manipulate them, but like, I, it's not a good. I'm not I that be accurate using that test. Right. So like I have to use a different one called tibial thrust, which a lot of other people find harder because you're not holding both bones.

00:34:12:21 - 00:34:37:23
Speaker 2
But in any case, it's, you know, there's things like that that you kind of have to standardize for yourself throughout the, like your journey of becoming a clinician, like, yeah. and I it seems like that. And like what, what you're saying where, that's like an error, like a rookie year, what you're talking about with the finger, like, not knowing which tests are supposed to be like a strong response in which are supposed to be less and like what?

00:34:37:23 - 00:34:55:04
Speaker 2
How much effort you have to put in to elicit that response. Like, I've had that even with getting like the just the reflex on the knee for dogs, like it's, just kind of getting a feel for it kind of thing. But that strikes me as like the person doesn't have a feel for it, you know, or they know they're missing it and they want to miss it so that they don't have to do the work.

00:34:55:06 - 00:34:57:01
Speaker 2
Either way, it sucks.

00:34:57:03 - 00:34:58:03
Speaker 1
Well, that that makes.

00:34:58:07 - 00:35:00:16
Speaker 2
Either way is a problem that needs to be addressed.

00:35:00:18 - 00:35:28:14
Speaker 1
Yeah, that makes me really wonder. the the one that abstracts trait triggered me. Someone's like, sorry, triggered me the most at the time when I was about to leave like to to LA and enjoy a weekend. But what happened is that the doctor literally just did a, you know, like with I don't know if you know, like dog cat has that but ankle dorsal reflex that you go up with that.

00:35:28:16 - 00:35:30:09
Speaker 2
Oh yeah.

00:35:30:11 - 00:36:00:20
Speaker 1
there's the actually from the OT, from the OT, I was working with for like orthotics. And then he was the one told me, no, there is R1 and R2 and he must do R1. And that's why you will have slowly start the corners instead of just jerky, sudden starting of corners. But they just did that. And then they said, oh, because you slowly start.

00:36:00:22 - 00:36:08:02
Speaker 1
This is clinically proven to be functional.

00:36:08:04 - 00:36:26:00
Speaker 2
But he said because it starts slowly and it doesn't start abruptly, that it's not chronic because that's not true. Some seizures do start slowly. I've definitely seen that in patients with my eyes that I've then going to get given a like an anti-seizure medication to and stopped the seizure. So I know it was seizure. Yeah. But like I've seen it.

00:36:26:02 - 00:36:27:07
Speaker 2
That's crazy.

00:36:27:09 - 00:36:34:09
Speaker 1
And now they had this. That's why it's functional. And I was like it took me about five.

00:36:34:09 - 00:36:53:16
Speaker 2
Hours the number of times like, yeah, yeah. The number of times I've been told that I'm not dehydrated because my kidney values are normal. It it makes me sick. It's so upsetting because like, that is that means that you're waiting. Because when you start to have a normal creatinine, that means 75% of your nephrons are not functioning anymore.

00:36:53:18 - 00:37:25:22
Speaker 2
Okay? That's when it starts to creep outside the normal value. It will not go outside of the normal reference range before, 75% of the nephrons are not working. Right. So like yeah, like and that's like I which I've had twice now, but but like I've been dehydrated and hypovolemic many, many times outside of those times, you know, where like and some of those times maybe at least half like they were trying to use the fact that my cricket was normal as evidence that I wasn't not dehydrated and did not that did not require fluids.

00:37:25:24 - 00:37:55:10
Speaker 2
There's some doctors like. Another thing I observe is that it seems like doctors who are not trained in the US or who that like, at least in med school, brought or something like they had a lot of life experience and like medical experience abroad and especially in countries that are not as developed as ours, like they tend to be better doctors because they tend to have to have worked with less, they have to use more clinical reasoning and like it's less about remembering things because there's no allusions in those places that you can know everything, and you don't get to run all those tests like that.

00:37:55:10 - 00:38:29:22
Speaker 2
You might want to. yeah. So I have like, found that I started noticing thing when I would go because I would go to the E.R. for like the same issues. Right. Like usually GI issues, GI losses and fainting and, you know, that type of thing. and some of the doctors would look at my tongue. I don't know if they've done this to you, but it's kind of more of like an eastern thing, like hailing from TCM, from traditional Chinese medicine, where it's like they look at your tongue to get different characteristics about the, like state of that patient.

00:38:29:22 - 00:38:53:05
Speaker 2
And, because I looked into it after a couple of, like, doctors who had been foreign and not from China either, like different places. not in the western country, not Western countries, though they like, would do that more often. I don't think I've had any like state, like U.S trained doctors do that. But those doctors would say that I was dehydrated and they would put me on fluids and they would use that as their.

00:38:53:07 - 00:39:14:15
Speaker 2
That's one of their, objective measures because they're I mean, I'd imagine it's because they've seen probably a lot more severely like dehydrated patients than people see here. And they've seen that, you know, how long your career will hold out for which, you know, varying patient to patient, but a long time, like a long time, 75%, you know, it's like saying what the heart rate compensates to.

00:39:14:15 - 00:39:35:07
Speaker 2
It can't like it. Like literally it will compensate and it will look completely normal on EKG or whatever until it can't, you know, so it is frustrating that our system is so reactive when we have the data and evidence to know that there is a way to be proactive. Yeah, we they're going to wait for kidneys to fail.

00:39:35:09 - 00:39:54:20
Speaker 1
We definitely not not set up for the chronic phase or anything that it's just like not in the emergency, especially in your situation that you know, you're about to die. You're going to do something about it. yeah. It's it's very, very, very disheartening for sure.

00:39:54:22 - 00:40:10:15
Speaker 2
And even if you are about to die, if you're not about to die in a way that they can detect, then it still doesn't matter and they're going to send you home. Yeah, yeah. So that's the hard part. It's not about whether you're really about to die. It's about if they believe you or they can. If you come up positive on one of the things that they can service you for, you know what I mean?

00:40:10:15 - 00:40:20:04
Speaker 2
Like it's like, well, do you have a coronary? No. So okay, well then I don't know what to do with your heart. Like it's not it must not be an emergency because that's the only type of emergency that could ever happen.

00:40:20:06 - 00:40:22:03
Speaker 1
But that's funny because.

00:40:22:05 - 00:40:25:08
Speaker 2
You know, there's like three things and they're like, if it's not one of those.

00:40:25:10 - 00:40:50:02
Speaker 1
No, you don't have anything going on. So then there was seek for a psych, right, right. But then they don't they are not rich trained for. Yeah. That's what yeah I, I trying to see where is the change going to be. Like you know for exactly the system. It's just so difficult because of the. Yeah terror structure. And so looking back everything.

00:40:50:07 - 00:40:51:05
Speaker 2
Yeah.

00:40:51:07 - 00:41:19:13
Speaker 1
You know I I'm, I'm really glad that we had you here because I think that you also have, a perspective of treating animals and seeing that how this is so not a human hanging like with our patients. And now we are humans. Yeah. And they don't treat the same, you know it. They don't treat it objectively. They don't really have really standard testing and stuff.

00:41:19:15 - 00:41:27:13
Speaker 1
And then so there's just a lot of things that are lacking in like a charting system as well. There's just so yeah.

00:41:27:15 - 00:41:58:16
Speaker 2
And yeah, yeah, it stems from the unknown. And as that's where masters of that, you know, because it's there's never an illusion that like the thing you learn to do in vet school is how to obtain information that is accurate, most likely to be accurate, you know, like, and how to, get that like you're not because, you know, we're not going to be seeing the same diseases in 20 or 30 years that we're seeing right now as the most prevalent, you know, so it's not about memorizing all these different, illnesses, you know, on this rotation.

00:41:58:16 - 00:42:09:16
Speaker 2
It's about learning how to get a complete data set and learning how to think clinically and figure out, you know, what's going on with what you have at your disposal. you.

00:42:09:16 - 00:42:11:03
Speaker 1
Said something about and I.

00:42:11:03 - 00:42:45:24
Speaker 2
Do think human medicine has a lot to learn from bad. Yeah, yeah. it definitely takes some analytical thinking to be a good, doctor. Like a clinician. Like you have to be able to think about things that aren't, currently something we are aware of, like, So, yeah, I mean, I think that the issue like, so I have one, you know, person that I, one connection who's an MD and a JD who had mentioned that it seems that there are a lot more analytical thinkers in law than in medicine.

00:42:46:01 - 00:43:13:05
Speaker 2
and that most people who are in medicine, at least that go to med school in the States, like they are very good at rote memorization of like a list of things that they can then regurgitate it and apply it to that only that one situation. But it's they're not as skilled at, being able to look like to zoom out and look at a large, you know, picture and connect dots that maybe aren't don't have an established connection between them yet.

00:43:13:05 - 00:43:31:01
Speaker 2
Like you have to be able to rely on your theoretical like framework, your basis of knowledge and physiology to to look at something and say, like this isn't, you know, adding up. And then even if there isn't like a described condition, describe it like, describe what you're seeing. That's always the thing. It's like, don't. That's why you don't just say normal.

00:43:31:01 - 00:43:58:04
Speaker 2
Like describe it. Like at least just describe it like normal rate and rhythm. no murmurs heard. Like, you know, it's not that hard to to describe normal a little better. So, you know, I think that's one thing that's like, was helpful, I didn't realize is my therapist, like, offered to, she happens to, like, also have similar conditions and have worked through a lot of these systems.

00:43:58:10 - 00:44:14:09
Speaker 2
I never would've thought to ask, but she said that for some patients, and she offered for me. She would like call to call our doctors and to, you know, to to weigh in and let them know that she's evaluated us psychologically and like, doesn't think it's it's definitely not psych. You know, I would never have thought to ask.

00:44:14:11 - 00:44:38:11
Speaker 2
a psych provider to do that, you know, all these years of psych treatment. I think just because I assumed it was a psych problem, I didn't think to ask them to testify that it wasn't. But, like, now, you know, that's something that probably would be helpful for, for people to know that they can, like, ask that because it's like, if your doctor keeps saying it's anxiety, have them talk to the person who's the expert on that, on and on you, you know, your specific issues.

00:44:39:10 - 00:44:40:19
Speaker 2
You know so like that's great.

00:44:40:22 - 00:44:41:22
Speaker 1
That's a great. That was.

00:44:41:22 - 00:44:42:23
Speaker 2
Helpful.

00:44:43:00 - 00:44:47:02
Speaker 1
Yeah definitely for sure. Well yeah it's.

00:44:47:03 - 00:44:52:13
Speaker 2
Because they do know. And I was like when you're saying where's the change coming from. Yeah I was thinking maybe there but.

00:44:52:15 - 00:45:13:22
Speaker 1
Yeah there's a long list of like you know what we wanted to change. But I think that's a great idea. Yeah. To really have brought on the other specialties into the picture. So you know like a multi disciplinary system that's. Yeah. The, the, the, the core of the issue is that there is no collaboration between the doctors and a we are the one.

00:45:13:23 - 00:45:14:10
Speaker 2
Yes.

00:45:14:12 - 00:45:21:01
Speaker 1
Who's in charge of collaborating everyone together. But it's just so difficult right.

00:45:21:03 - 00:45:42:08
Speaker 2
Yeah. Sending your records unfortunately isn't enough. They'll still like show up to their appointment and be like, what? What are you here for? Yeah. You know, so it's, Yeah. And it's like they talk about multi disciplinary, but like, you know, they'll say, well I think this is just anxiety. And when you say, well I was just so my psychiatrist yesterday and she said I need to see you.

00:45:42:10 - 00:45:57:11
Speaker 2
They don't have a come back. Like it's weird at least sometimes. because that just happened to me recently. I luckily had just seen her like literally the day before. And so I was like, well, I can reassure you that she is in agreement. These are not issues that are in her wheelhouse and that they're not psychological in origin.

00:45:57:13 - 00:45:58:10
Speaker 1
Yeah.

00:45:58:12 - 00:46:00:11
Speaker 2
You know.

00:46:00:13 - 00:46:13:24
Speaker 1
It's like it's like your your psych, doctors are defending for you. And then the other ones is like, oh, I don't have a degree, but I would rather think that this is, it's just so unreasonable, but.

00:46:13:24 - 00:46:16:16
Speaker 2
Right. Yeah. Yeah.

00:46:16:18 - 00:46:18:20
Speaker 1
I'm hoping that it's gonna.

00:46:18:22 - 00:46:20:19
Speaker 2
We're talking about it. Let's do a little bit better.

00:46:20:21 - 00:46:57:08
Speaker 1
Yeah, definitely. I think this is very helpful for, the discussion. I think every single story matters. That's always. Yes. You know, there's more story to be told, and there's more people feel related and there's less people will get gaslighted and then they'll disbelieve of themselves. I think that's the worst thing that can happen with any people will have a court conditions because, you know, like, like I actually mentioned that a cult that has a lot of different meanings in Western culture, especially like, yeah, with the the more of a you UK type of a colony.

00:46:57:10 - 00:47:21:02
Speaker 1
so like they also have this idea of witchcraft and I don't know who I said. I really, really have to dig and do research about exactly when these are called turned into the medical field because right now at least, yeah, they are so many different states, you know, that I'm not accepting of this ward at all. So if you do surgery you go back.

00:47:21:04 - 00:47:23:01
Speaker 2
Oh interesting.

00:47:23:03 - 00:47:54:22
Speaker 1
Yeah that's what happened to me. So like I have a oh so you don't see it right. But you wind up. It is it is total core because it's tight. And then they start writing the surgical notes. They did everything. And then I got the surgery. And then a year later I had a bag to put on a back surgery and still don't have a date on it for what I, you know, that's why it makes, that's why it made the, the entire, testing difficult.

00:47:54:24 - 00:48:23:07
Speaker 1
There was the, the testing, showing somatosensory, the potential that my lower waist down has some issues so that it's like there's some kind of tears that it caused, like there's no signal going down. But their reason is that, we checked that imaging is normal, and then, you know, like, maybe she just have, like, hereditary spastic paraplegia.

00:48:23:09 - 00:48:29:00
Speaker 1
I was like, what does that come from? I do have a tattoo. Yeah. You know, you don't see that on this. I.

00:48:29:02 - 00:48:43:07
Speaker 2
Sometimes they reach so far that like for things that are not that are harder to fathom, you know, but but usually it's things that don't have a treatment or that don't have it like that. It's like they don't have to do anything else. No. conveniently.

00:48:43:07 - 00:49:05:23
Speaker 1
But better not doing. Yeah. Surgery than doing surgery. Right. So, I mean, I understand that's a good thing that if we don't need to do surgery, but that's another problem if there is a having existed. do you believe the patient's symptom signs or just their imaging?

00:49:06:00 - 00:49:31:21
Speaker 2
You know. Yeah. I mean, I think that a good doctor believes their signs 100%. Like, I don't think that it's I, you know, I always just take it back to my own framework as a veterinarian, and it's like, so and you know, so we have for the verbal component is the client. So it's kind of like a the veterinary client patient relationship is what it's called instead of just the patient doctor relationship or or but it's sometimes yeah.

00:49:31:21 - 00:49:51:20
Speaker 2
Like I mean that happens all the time. All the time. Like tests come back normal. And it's the question is, I was just talking about this with my friend who's in her first year, that it like when doctors, physicians tend to, like, deliver news that is normal as like as if that is a solution, the normal test result.

00:49:51:20 - 00:50:08:22
Speaker 2
You know what I mean? Like someone came into you for a problem, and most people don't seek medical attention for like something that, you know, they just want peace of mind. But it's probably not an issue, you know, especially now, like with the access to health care being what it is, people are not going in unless there's like a real problem.

00:50:09:01 - 00:50:30:16
Speaker 2
Like they don't just want you to put their mind at ease. so it's not about putting my mind at ease, like it's not about me being happy that the test is normal, but that is the reaction I had for like at least a decade, because they conditioned you to. They're like, I have great news. And like, they, you know, they make it seem like they're doing something positive for you by not helping you.

00:50:30:18 - 00:50:59:10
Speaker 2
and by leaving you in the same place that you were only now with testing that shows you don't have a problem. So kind of worst position, right? Because now you can't really get help from it as easily for it as easily. So like, I, I think that like the. Yeah. The what when we communicate results, I think the biggest thing that, went into me learning how to write medical records is that when I do a test, like, you have to know what you're going to do with that information.

00:50:59:10 - 00:51:17:06
Speaker 2
Like, that's almost as important as, like, knowing why to order the test like. Right. Because like, you need to know what are the possible outcomes. What do they mean? you know, and then what do I do? If it's a positive, what do I do next? If it's a negative? Like that's part of my algorithm, deciding what testing I'm going to do.

00:51:17:08 - 00:51:41:17
Speaker 2
and what makes the most sense because, like, most of the time, clients don't have infinite money. So you kind of have to figure out, like, a lot of the time, there's many tests you can do for a set of science that may rule in or out certain conditions. So it's like a very complex kind of process. But, but like, you're never, like, I never deliver that, like, normal news and then not have anything else planned.

00:51:41:17 - 00:51:58:17
Speaker 2
Like, it's very odd how they were able to just do that to us. And, and get away with it in like most cases, they, like, do a little kind of mind game where they make you think that they're it's the good news thing and the like, you should be happy. You should be. It's nothing bad like you should be like this test for everything bad.

00:51:58:17 - 00:52:18:03
Speaker 2
You know, I had a cardiologist tell me once on a Holter study that, like, it was nothing bad, but, like, yeah, my heart rate went up to in the one 80s, and there was like a two second pause after an atrial run, but there was nothing bad. And I think that what he's saying is like, there's no yeah, I think what he's saying is there's nothing that he was like, this was an older physician to.

00:52:18:05 - 00:52:42:19
Speaker 2
But it doesn't really I think it's they've certain things that they think of as like the things they know of as being bad, you know, like, as being life threatening, I guess would be the thing. Like, for example, Vtec is a really bad rhythm. I've had that rhythm before, but it's only shortly, like it's not. So that's a trackable rhythm that can lead to like if you get to pulseless Vtec then you're in a code.

00:52:42:19 - 00:53:07:10
Speaker 2
But Like that's I think what he's saying is like it's not one of these known things that's really bad, but like they, but they don't entertain the fact that like, they're seeing objective evidence of, you know, something going wrong with like, the heart shouldn't be that bad so they can acknowledge that, but then, like, they don't.

00:53:07:12 - 00:53:08:04
Speaker 1
But then take it a.

00:53:08:04 - 00:53:26:02
Speaker 2
Step further to say, well, then that means that something's causing this to be abnormal. That isn't part of the things we've tested for. Therefore, we have to do further testing. Yeah, like that seems to be a step. They just like don't get to go. But that is very much part of a thorough diagnostic workup because yeah the signs are coming from somewhere.

00:53:26:02 - 00:53:48:19
Speaker 2
So as a good doctor you always believe the signs. Sometimes testing like there's some diseases that testing like even known diseases that have very poor ability to test for like FIP the, the feline, disease. for which they put it's a feline coronavirus. And so they pulled the the drug remdesivir came up with feline trials for FIP.

00:53:48:21 - 00:54:08:14
Speaker 2
and actually we have we only just recently got the approval to use it in cats because during that time it was pulled from clinical trials and therefore we weren't able to, use this drug that we've been working on to cure this previously, 100% fatal disease in cats. So, that's been frustrating. But,

00:54:08:14 - 00:54:17:03
Speaker 1
what we connected what you just said before, which means, like, they really had memorization. They're good at memory.

00:54:17:03 - 00:54:17:15
Speaker 1
All these.

00:54:17:18 - 00:54:18:14
Speaker 2
Yes.

00:54:18:16 - 00:54:34:11
Speaker 1
But the test and fitting the box. Right. So that's a good thing because it's not just theories to things, but they don't know the unknowns. So then they will be putting back to the patients. And that's a good news. So you shouldn't really have these signs or symptoms.

00:54:34:13 - 00:54:56:18
Speaker 2
Right. And I think the really big problem with that is that, because they don't have to do it that way. Like they could have the test come back normally and be like, so the test came back normal. And like the way I think over results that are normal in a face and still being disease present is like so we ran this test and it came back, you know, I might go over what it tests for to remind them and be like it.

00:54:56:20 - 00:55:12:12
Speaker 2
this came back, normal limits. Sometimes it's a situation where it's like we can track it over time and potentially like, you know, we'll see a trend or sometimes there's another test to go do next. But I always have that ready. Yeah. It's like, hey, this is how, you know, positive and like that's negative. So why that's a good thing.

00:55:12:12 - 00:55:29:19
Speaker 2
Like it's you know, I know that doesn't get you any closer to like, finding a solution. So here's some next steps that we can take. It's weird that they just don't have that. They just get to skip that conversation for us, for, you know, people, they just, think that I think it's because, like,

00:55:29:21 - 00:55:30:09
Speaker 1
Like.

00:55:30:11 - 00:55:47:00
Speaker 2
Like they think, therefore, I don't know if they think that means you don't have a problem or, quite where that, that, that comes from, you know, because, like, we don't, I don't know, it's just like.

00:55:47:02 - 00:56:09:02
Speaker 1
Is if patient feels like they're not believed because, I mean, in a sense that I almost feel like, well, I don't think it really you have a problem, but, you know, like, you can always come back or, you know, like they're not really looking into or giving you at least another explanation of like, oh, this. Yeah. This is negative for most of the, the unknown causes.

00:56:09:02 - 00:56:34:17
Speaker 1
Right. But like right don't cause it. But like there's still a known stuff that we didn't really know we can test further. And then it is possible to be rare situation. But instead yeah I feel like, you know, rather than taking that route and saying that something is like we, we talked about the whole time, it's really about this occult thing, right, right, right.

00:56:34:19 - 00:56:48:16
Speaker 1
You see things you don't see on test and instead are thinking, well, you must be the other way around. Just like you manifested the symptoms mind body thing, you know, like then they start.

00:56:48:20 - 00:56:49:06
Speaker 2
Yeah.

00:56:49:09 - 00:56:54:09
Speaker 1
Themselves and the like. Yeah. It makes sense.

00:56:54:11 - 00:57:21:21
Speaker 2
Yeah. And that's I think why it's important to mention that a lot of these symptoms that are really vague and like think are not something to lean on for. like you can't like, for example, nausea. Right. Like that can't, you can't say, oh, well, like, as you know, because I had a doctor recently say this actually, as you know, nausea is a symptom commonly associated with Pots.

00:57:21:23 - 00:57:49:08
Speaker 2
So your doctors, found in this visit that all of your your pain and, that all of the pain and, like, symptoms were coming from pots, you know, so like, there's well, first of all, the pain isn't really, like, a legit thing to say about pots, but that is what they said, that my pain was, caused by pots, and that does it that I complained about.

00:57:49:13 - 00:58:24:20
Speaker 2
But what I'll like there are a lot of symptoms that can be caused by a lot of different diseases. And and that's what we're taught to think of those as the vague symptoms that aren't like, usually the ones that make or break any diagnosis. it's supposed to be that you see a patient, you do your exam, you work through a list of differential diagnoses, so you write down everything you can think of that might, you know, have a patient like this, like, you know, after you've done your history and your physical and maybe some tests or whatever, or maybe you're just reviewing records, but you write down a bunch of stuff that might fit

00:58:24:20 - 00:58:49:13
Speaker 2
and, then you work through like, so then like there's some diagnostics that will exclude or rule in or out certain things. So maybe, you know, that's how you approach it. And then you're kind of just crossing things off or circling things as you go along. It can get difficult for us sometimes if we have a positive for something that either doesn't mean what we think it means or like two things can be true as well.

00:58:49:13 - 00:59:10:08
Speaker 2
You know what I mean? Sometimes you have two issues that submit to cause one syndrome, and you fix one. And then, like the patient doesn't do well because you didn't fix both. Like, like the most common when I think of as like hypothyroidism and cats, which often masks kidney disease. So you might have a cat that you run blood on and it's thyroid levels are really high, but it's kidney values are okay.

00:59:10:10 - 00:59:33:12
Speaker 2
Well, you know, I mean we know that we need to recheck that cat. And, you know, after we control the thyroid because that will make the kidney disease present, blood work if it is there. so, yeah, there's a lot of little things like that that I've had to learn about medicine, that it's really insulting that physicians don't have to learn about their single species and single area of specialty, because I've had to learn how to apply that logic to like, at least four different species, you know, at the drop of a hat.

00:59:33:12 - 00:59:39:05
Speaker 2
And then like other ones that, you know, we add into our realm of specialty. But yeah.

00:59:39:05 - 00:59:56:13
Speaker 2
Yeah. And I have like a disease that affects my brain function, you know, so it's like it's just super insulting that they can't like do that for. a yes or.

00:59:56:15 - 00:59:58:11
Speaker 1
Oh, a little unstable. Okay.

00:59:58:14 - 00:59:59:21
Speaker 2
Sorry. Here.

00:59:59:23 - 01:00:01:07
Speaker 1
Yeah.

01:00:01:07 - 01:00:06:08
Speaker 1
Yeah, I know they did. You said they couldn't do it. Yeah, I don't know.

01:00:06:10 - 01:00:07:21
Speaker 2
Sorry.

01:00:07:23 - 01:00:09:20
Speaker 1
I was like okay.

01:00:09:22 - 01:00:15:09
Speaker 2
No it's yeah it's frustrating to like do that same thing for us. Yeah.

01:00:15:11 - 01:00:36:22
Speaker 1
Yeah. Well this is really, really upsetting to like. I mean, even you have brain function issues. You still brilliant with all the different species of animals, how treat and everything like those are so much more. And then like we've, we can treat animals like, with compassion. Why don't we do that same to the human beings you know with.

01:00:37:00 - 01:00:40:04
Speaker 1
Yeah. Exactly. Same same species. So

01:00:40:04 - 01:00:41:23
Speaker 1
is really great to you know

01:00:41:23 - 01:00:53:10
Speaker 1
having this conversation with you because I think that gives us another perspective. Yeah. Just from the patient but also from, you know a doctor perspective that a physician perspective for,

01:00:53:10 - 01:00:53:11
Speaker 1
be.

01:00:53:12 - 01:00:56:12
Speaker 2
Different patient population. Yeah, yeah yeah, yeah.

01:00:56:12 - 01:01:00:03
Speaker 1
That's good. so yeah, I just can't believe because it's still.

01:01:00:03 - 01:01:01:11
Speaker 2
Medicine but yeah.

01:01:01:13 - 01:01:05:08
Speaker 1
Is that the same. Yes. So I really hope like, you

01:01:05:10 - 01:01:20:13
Speaker 1
especially the end of our key points that you pointed out with differential diagnosis and then, you know, collaboration with doctors and those like, you know, when tests were normal. That's how we actually approach to it. And those things that that we can change.

01:01:20:13 - 01:01:28:01
Speaker 1
But yeah, that's why we have this podcast for. Right. And so we get this one to the table.

01:01:28:01 - 01:01:48:06
Speaker 2
Yeah. No I hope there's more that come out like it, like I, if I have more energy I will like if I get my things like on a better route, you know like I will try to, I want to do something like that. But I, I think it just like I don't really like being on camera, but I do feel very passionately that these issues be addressed.

01:01:48:06 - 01:02:06:21
Speaker 2
And I think it's in the best interest of, like our species as a whole to talk about these things, because everyone's going to become disabled at some point unless you die suddenly. I think people don't like to think about that. But, you know, it's like it's going to happen unless, like, it's a complete surprise. Yeah.

01:02:06:23 - 01:02:34:20
Speaker 1
Yeah. That's so true. And yeah it's it's really important topics. And I think that we really have to see each other here, each other and especially for physicians to hear us and hear the symptoms. And sometimes getting dismissed so much that, you know, we don't feel like we have a voice. So that's why I have this platform for us to really having a voice in seeking accurate diagnosis and

01:02:34:20 - 01:02:39:04
Speaker 1
having the incredible strength of those navigating those challenges.

01:02:39:04 - 01:02:42:14
Speaker 1
I'm very thankful for you to today to join

01:02:42:14 - 01:02:47:00
Speaker 1
giving people more awareness about the cold conditions and,

01:02:47:00 - 01:02:50:13
Speaker 1
and even people with complex medical conditions.

01:02:50:13 - 01:03:06:09
Speaker 1
And don't forget to visit our website, now at the slavik.com/account awareness and to access resources, read more about our topics and support our mission.

01:03:06:11 - 01:03:35:24
Speaker 1
And if you find this episode enlightening, please consider subscribing to our podcast. And really giving a great review and feedbacks to us is really important. From more listeners and follow us also on social media at a call awareness to stay connected and informed about our upcoming episodes. And remember, your story matters and your health matters. And you are not alone in this journey.

01:03:35:24 - 01:03:41:08
Speaker 1
So until next time, keep striving for knowledge and awareness. Bye for now.