 Why's it feel so good? Okay, welcome to Tea Time 002. I'm Lance Quiggy, and this is Allison Tanner. No relation. Allison has just, I wanted to have another one of these interview Allison and hear about her bad experiences with medicine and health. Because I think her recent extravaganza has, I don't know, it could be a good lesson for a lot of people. What we kinda want you to get out of this is like, I want you to understand that, and she kinda disagrees with me, but most, I think most providers are not gonna care about your health as much as you do. And if you have a particularly challenging situation, you're gonna need to know a lot of details about yourself and the provider needs to know those things, but they don't know what those details are and you're not gonna know what is relevant if you don't know a little bit about the body and generally your body specifically. So Allison went to a neurologist and I'll let her kinda tell her story of her experience with that. So, we know I've had some lingering health issues for a while and things with the stress of PA school and managing my time, they've progressed. Well, they've definitely come back and that's okay. I've still handled them fairly well, I think. It's much better than what I was handling and dealing with in undergrad, but the symptoms are a little bit more progressive. They're a little bit scarier, so some vision issues, some hearing issues, severe neuropathy, which if you don't know what that is, it's pins and needles are burning in your extremities, so I have peripheral neuropathy and it gets worse when I'm outside in heat or if I'm exercising and being in PA school, I've learned that is very clinically relevant to multiple sclerosis. So a couple of months ago, we decided, okay, maybe I should go get another brain image, see if maybe things have progressed. There's some evidence now if you have a history of Epstein-Barr virus that you're much more likely to get MS. Basically 100% of people who have MS have had Epstein-Barr virus. Which she's had. Correct. So- That's mono. Yes, that's mono. So we decided I should probably just go get a brain scan, get a brain MRI, see and make sure that it's not actually MS since it is so clinically specific to that. So I decided to seek out a primary care provider at Phoenix. She referred me to a neurology clinic that they have worked with in the past. And you went to a cardiologist first, right? I did go to a cardiologist first. And briefly they were, my understanding of the story is, he said, I mean, your heart looks great. I don't think it's your heart. Go see someone else. Yes, because there's some things with dizziness. I've had maybe a little bit of hypertension recently, but hypertension is associated with stress and things like caffeine, which is a stimulant, which will increase your blood pressure. So in the fatigue. And fatigue, yep. Like a bad night of sleep, your heart rate and blood pressure the next day will probably be more elevated. So if you have something like sleep apnea, you're more likely to have elevated blood pressure. And we do kind of understand what causes blood pressure, which is relevant for later in the story. Oh, God. But so we decided, see some specialists, see what's going on. Cardiologist said, you look great. It sounds like a lot of your symptoms are definitely neurological. Make sure you see the neurologist. So I went in for my first appointment with the neurologist. And I'd been told in advance that they typically run late. They typically run behind. And that's OK. A lot of specialists, especially with complicated cases. You got to spend more time. Yeah. You know, I want a provider. If you're running late because you're spending an hour with a patient and you're going to spend an hour with me, I don't care. As long as I get that time to see you. And I don't think everyone has that same mindset. But for me, I've worked in a clinic. I know what happens when you're running late. It doesn't bother me. So my first appointment I show up. And the medical assistant is in the room with me taking history. And this was kind of red flag number one. The medical, I don't know if I told you this, medical assistant was training another medical assistant. And I knew that they were training because he didn't know how to do anything. And he didn't know how to spell any of the stuff. So he's taking my history. And I could say one word. And he would look at the girl. And she would spell him the condition. And at least half the time, she was spelling them wrong. And so I can kind of understand that. You don't need to get the spelling right. The computer will fix it. As long as you're getting the notes, that's fine. But it was really hard for me to give a coherent background because my story is so long and it's eight years long. So is that the first red flag? That was the first red flag. Was that part of the appointment late? Yeah. So this is maybe an hour after my appointment time. They take me back. This is the experience I'm having. So then I'm sitting in the office for about an hour after they took not a full intake. But as much as they could get, half the words are spelled wrong. I know they're spelled wrong. And the neurologist finally comes in and she starts in. So I hear what brings you in today. And I said, well, I've been having a lot of symptoms for a really long time. And I think it's time that I get them checked out because they've started to come back and they've been worse. So I start to dive into my story and she cuts me off. And she says, give me just the highlights. Pick one or two symptoms that you want to discuss. And with the majority of my symptoms being neurologically related and all of them overlap and you're coming in for a possible diagnosis of multiple sclerosis, which has tons of different presentations and symptoms that are associated with it, for her to tell me to narrow it down was kind of upsetting. But, you know, okay, whatever, I'm not there for you to diagnose me right now. I'm there so that we can order tests to see what's going on. I understand that. I have that background to see that. But for someone who doesn't know how ordering tests work, she just needs a code to put into the computer to get insurance to approve me to get the MRI because she knows from hearing my story, I'm not diagnosing this girl today. It's not gonna happen. It's too complicated of a case. So she just needs the highlights. I understand that. That's fair. So I told her the main symptom that's most easily recreated is the neuropathy, which is pins and needles. I get it in my arms, my legs. If I'm exposed, like if I go outside right now, it's maybe 90 degrees. I'll have neuropathy within five minutes. Sometimes I'll get it with exercise. Sometimes I just get it randomly sitting in class. So I say that one and I don't remember if I said any others just because that's the main one. And I know that if I'm experiencing neuropathy, when exposed to heat, that that is a diagnostic code to be able to get me an MRI for MS. So I knew that. Cool. She spends another five minutes maybe doing some physical examinations and I've had physical examination class. So I know certain things like, number one, if you're gonna do a test on an extremity, make sure you check that test bilaterally because that's really relevant. You wanna make sure that it's both sides that are affected or just one side where maybe it's just a normal presentation for them and you wanna make sure that it's not anything egregiously asymmetrical. And she only checked one. She only checked one. She only checked one. She did maybe one strength test and she didn't check any of my dermatomes that I have persistent numbness in. Like there's a spot on my leg. I just don't feel it. And that's... It's irrelevant, I guess. It isn't and I know it isn't. But again, I don't really... For this initial appointment, that's not super relevant because I just need her to order the tests. So she says, okay, yep, we're not gonna find anything out today. I'm gonna send you to get some blood work we're gonna check your B12. She's like, I think it's a B12 deficiency. For those of you who don't know what B12 is, it's a vitamin that's primarily found in meat and so you see B12 deficiency primarily in vegetarians and vegans. I'm not that. I have no background of having low B12. I've had B12 checked in the past. There's, I'm not malnourished to have low B12 and low folate, but she wanted to check that. So maybe there's certain GI issues that you might have that affect B12 absorption into the body. So okay, whatever. I had it checked. It seems unlikely, but let's clear it. Yeah, I'll buy that. That's a blood test. And I was like, is there any way that we could also do an MRI because I have a family history of autoimmune. I have a family history of muscular dystrophy. Let's make sure there's nothing centrally going on in the brain, especially seeing this new research about Epstein-Barr virus and knowing that I had a really hard time with my mono infection. Maybe it's connected. So I basically had to ask. She did agree though to order the MRI. So I went back, got my MRI. I got a copy of the MRI because if you're going to the doctor, you're getting imaging, try to get a CD. Not just the case report, not the reading. Get a hard copy of the images so that you can keep that. Save it, yeah. It's really, so my backstory for this, I've had brain scans in the past and they were all done in Connecticut and I don't have that disk. It's in Connecticut. So they can actually send my images to other providers. They only send them the written report. And sometimes they leave out things in the written report. That's not relevant to what you're getting tested for. So it's really important that you get the hard copy. So that's, take home lesson number one from this video if you're watching this far. Get the hard copy, get the disk, keep it in your files and your records. Yeah, organize it where you know where to find it. Yeah, you want that hard copy. So I got my MRI, I came home. I looked at it because I have a general understanding of what to look for and I did not see any lesions. So I knew going into the second appointment, it's not MS, which is a relief in some ways and also really frustrating because it seems like it's progressive and I don't want to keep getting worse, especially with the vision and hearing problems that I've been having. I don't want to go blind. I think that's pretty reasonable. So I went into this appointment expecting to be disappointed. And the first thing that happened was they changed my appointment last minute. So that's fine. Things come up. It was definitely inconvenient because I have class but I understand providers have a difficult time keeping their schedules and she had picked up hours on the day that I was supposed to see her somewhere else so they had to move me, fine, we made it work. I go to my appointment and I'm the first appointment of the day, 8.15 in the morning. I get to the clinic at 8. I go into the lobby, someone comes out and they say, oh, someone will be right with you to check in. And I wait for maybe 20 minutes and I hear them in the back say, she's late, where is this girl? And someone's like, no, I think there's someone out front. And so I hear this conversation going on. They just forgot to tell the person who was supposed to check me in that I was here. So I sat in the lobby for about 20 minutes without them coming to get me and I hear them talking about me in the back. So that's not a great start, but okay, again, I understand. People are humans, people make mistakes, people get confused, it's fine. So then they take me back. The NA is training someone again, but this girl was much better. She didn't have to get spelling, it was much more coherent. She was going through her old cards, her HPI, she did great. So I'm sitting there and the room that I'm in, the office room that I'm in is next to the physician's office, so it's adjacent. And the walls are pretty thin. So I'm sitting there for maybe five or 10 minutes and then I hear her talking and I hear my name. And then I hear her read the MRI results and I realize she's dictating a note. I'm hearing her process, I'm hearing what she's saying, she's dictating a note for the appointment she hasn't come in to see me yet. If you don't know what note taking is, so sometimes there are times where you would dictate part of a note before you see a patient. That's not that abnormal. But I heard everything that she said. She had put my vitals in it, she had put my MRI results, her patient care plan that she'd already decided and hadn't talked to me about any of this and that you probably shouldn't be uploading a patient care plan without falling up with a patient first because things change or you might do some more exams or you might talk to the patient and say, hey, there's some more stuff that we should look at before I really decide that I'm just going to refer you to other specialists, which is what she had decided. So that took maybe another 20 minutes. So I've been in the office room 30, 35 minutes and then still don't hear from her. She doesn't come to the door. I hear her, what I assume was her talking on the phone saying, are you taking any NSAIDs and asking questions? So I'm sitting there like, are you seeing other patients? I'm your first patient of the day. Are you talking to other patients? What's going on? She finally came in an hour and a half after I had been at the office, maybe an hour back in the exam room. And at this point, I had class because again they had to move my appointment. So I am really frustrated and she comes in and she says, hey, Allison, thanks for waiting. So everything's fine, your scans look good, your blood tests are great. I don't think anything's wrong. And I just start bawling because I'm so frustrated with all of this and clearly things aren't fine, clearly something is going on. But here's this provider saying, I did just baseline tests and I don't see anything. So I'm not going to investigate any further. And I think that's really egregious as a provider. There's a lot more tests that you could do, a lot more investigating that you could do. And she wasn't even gonna give me the time, day or place. You just nothing on your MRI. You don't have a B12 deficiency and you don't have neurological syphilis, which she did not tell me she was testing for. And I just think it's kind of crazy when they don't tell you what their thoughts are and they just order you a bunch of tests and then you find out, oh, you just thought I had syphilis, okay. And I can imagine that a lot of people don't feel that way, they don't wanna know all that, they just want you to, they want the doctor to do their job. But in a case like this where it's complicated and you have a little bit of a background, I don't, that doesn't make sense to me. I would communicate. She did know I was a PA student. So she did know I have some background in this. So I'm crying. Normally in this situation, you would expect a provider to stop and think, okay, she's upset by this. Let's talk about it. She just kept talking at me saying, yeah, I don't, your B12's fine. Your MRI's fine. You're the weirdo crying in public. And so I'm sitting there with my head just in my hands crying. And she, I finally composed myself, get it together, Austin. I sit up, I take a deep breath and she goes, do you have a lot of stress in your life right now? Which is, again, it's a reasonable question because clearly I'm upset. She knows I'm a student. Some of these symptoms can be exacerbated by stress. I know my symptoms are exacerbated by stress, but that's not what triggers them. And I've been meticulous about recording these symptoms over the years. I know what triggers it. I know what brings it on. Stress makes it worse if I have the symptom. And if I get a really prolonged period of stress, it can cause the symptoms to come up, but that is not what's happening here. And so I recognize this as a patient, as a future provider. And she looks at me and says, do you have a lot of stress? And I think I just kind of scoffed at her. I was like, I mean, yeah, I'm a PA student in school. And you're making me late for my class. So I have some stress, but I don't think it's what is causing what's happening. And she said, well, I can provide you or I can prescribe you a beta blocker. If that makes you feel better, it might help with your anxiety. And I said, I don't think that's gonna help me because I don't. Beta blockers are, you have, how do I explain beta blockers briefly? You take it for things like high blood pressure. Makes you chill out. Yeah. It's not a sedative, but it's something that helps calm your nervous system. Or the response from your nervous system. So yeah, it can help people with anxiety. It can help you lower your blood pressure. It can help your heart tone down if your resting heart rate's really high. But that's not my issue. And my blood pressure's actually been really normal. It's gotten better, yeah. The past couple of months, my heart rate is back below, my resting heart rate is back below 60. That hasn't felt like an issue. And I don't think anxiety is my primary issue because I actually don't feel very anxious. And I've worked on anxiety the past several years and I've been in therapy for it. And I feel pretty good about it. And that was really frustrating because it's something I've worked on. And so I said, I don't think that's gonna help me. I've been having more issues and I explained to her the other symptoms I've been having, how I have tremors, how I have all this other stuff. And she stops and goes, I didn't know you had any of this. And I said, yeah, because the first appointment you told me to pick a symptom. So you don't have my full story. And you're trying to say, you just need to see a rheumatologist take a beta blocker for all these symptoms that I didn't even know that you had. So she didn't take the time to really listen to me again, which was frustrating. And then again, I have this background. I've worked in a clinic. I understand what it's like when you don't know what's happening with a patient. That's okay. The doctors aren't gonna know everything that's wrong with you. My case specifically, it's very complex. I don't think science has caught up with what's happening to my body. I don't think they will find out for a while what's really triggering this and what's causing it. And I can accept that. And so I told her that. I said, listen, it's okay. I'm definitely frustrated by this, but it's okay if we don't know what's going on, but I don't feel comfortable just taking a beta blocker and masking some of the symptoms because I don't think it's gonna actually help me feel better. And she said, well, I can prescribe you Gabapentin, which is something that can reduce neuropathic pain. I can prescribe you a really intense B12 vitamin, which I questioned because I said, you just said my B12 levels are normal. Why do you think a vitamin is gonna help me? And she said, well, sometimes we have to treat things that we don't know what they're being caused by, like hypertension or high blood pressure. We don't know what causes high blood pressure, which we kind of do. There's a lot of explanations for why people have high blood pressure, not always, but we understand genetics has a component, stress, poor sleep, certain renal issues. There's high salt diets, high fatty diets, all of this plays into hypertension. So no, we do kind of understand what causes this and we understand how to control it. And we to a degree know how to reverse it. That's why if you are early in your hypertension journey, it's important to address it early because once you let it progress, it's harder to turn around. Same thing with diabetes. So she went on to say, and we don't know what causes type 2 diabetes, but we treat it, we do. We don't know exactly the biochemistry behind insulin resistance, but we know insulin resistance is part of it. We know that there's pancreas involvement and we do. We understand type 2 diabetes fairly well. So at this point, I'm trying to make sure I'm staying composed, but I'm very frustrated. And that was kind of ridiculous to me that she was trying to lecture me about things that were just factually incorrect. And then she said, well, you know, I'm typically a really difficult patient because sometimes I just think I know stuff and I try to draw connections between things that aren't really connected. So I'm a difficult patient and sometimes I just need another provider to tell me that what's happening is not what I think is happening. And I looked at her and said, okay, but most of my symptoms are strictly neurological at this point. And that was when she said, you're just a bad patient. And that was when I started crying again because that was not fun to hear and to be scolded when I'm just trying to advocate for myself. And I think that is what we kind of wanted to talk about is just it's really hard as a patient to one, understand what's going on. That's why you have these professionals. That's why you have people to help you because you don't know what's going on. So you have doctors to help you figure out what's going on. You expect them to have that baseline and to help you through your journey in your process. I'm someone who's been very active in my journey and my process. I'm meticulous, I've journaled and documented my symptoms throughout the years. I can tell you exactly when certain symptoms started, what month of what year, and... You're going to school for it. I'm going to school for it. So you can solve your own issues because no one else can. So I would hope that a provider would recognize that and say this girl is very dedicated to what's happening and to figuring out what's happening. She really wants help and I just need someone to help guide me, to help me order tests, to help want to explore this with me because it's affecting my life so much. And in the past when this has happened, I've just kind of shut the door and said, okay, nothing's wrong with me. I'm just going to step away and I'll just help myself with diet, lifestyle and exercise. And this time I said, no, you should really be trying to figure out more of what's going on. And then she told me I'm just a bad patient. Which is frustrating for all of us. And I mean, as somebody who's not there, I'm like, okay, what do we do now? Do you want me to leave a bad review? Because I think we should because I don't want anybody I like going to see this person. But that doesn't solve your problems. And I think the solution is just to constantly keep learning about this stuff. Even if it's not, even if you don't want to go the Allison route and go to some higher education program where you learn how to order tests and stuff. You've got to, you've got to one, you've got to learn what symptoms matter. And two, you've got to learn who not to trust and who to trust. And so, and I mean, especially for something with, you know, she's got hearing, she's got vision symptoms. You don't want that to just run amok because it could get worse, right? So even though this is frustrating, we still have to find another appointment with another doctor and try to find somebody who might be a little bit more compassionate and maybe hopefully a lot more competent. And that's, so the plan that she gave me is, well, I can, I think you should see a rheumatologist, which is fair. I think you should see an infectious disease doctor because of your Lyme history. Kind of fair. We know I don't have an active Lyme infection now. And so most infectious disease doctors are going to say, you don't have an infection anymore. Your recovery process is not something that you deal with me with. So yes and no on that. But I think it hits home about these specialties that medicine has. So you have neurology, cardiology, you have endocrine, you have rheumatology. They can only focus on what is tangible for them. And so when this neurologist has a case where there's nothing in her immediate round of tests, she's not going to explore further to figure out what's going on. She's not helping me. She's trying to push me off onto another specialty even though my symptoms are clearly neurological. And I think that's a really big problem with the medical community is one, they just don't listen to the patients. Two, if it doesn't fit their perfect image of what a disease should look like, they are clueless on how to help you. And I say that because this lady was clueless about what to do with me. She even said, I could just send you, I can write you a referral for a different neurologist so you don't have to come back here. Which at this point, yeah, I'm never going back there. No one should, but. Except to get your water bottle that you left. Someone else went and got it for me so I didn't have to be locked up. Hashtag, thanks, Brenna. I'm really good friends. So the thing that is frustrating is in the medical community, she is trained to notice these things. And we joke about this with our buddy, Alan, but it's like, oh, she saw the MRI and you're not completely paralyzed. Oh, you must be fine because she's trained to see the worst of the worst and treat the worst of the worst. Where you're not trying to be necessarily healthy, you're just trying to be not sick. And for you, it's not quite there yet. So you're trying to just get on top of things before they get worse. So when you see a doctor who's a creature of habit, like all humans, and they're looking for this pattern and then they don't see the pattern and they don't know what to do, the dream is to find the doctor house to take your patient because it's a unique case and he's gonna look at it with a blank slate. You need people who, and this goes back to the advocacy. You can self-advocate for yourself, but if you're just told that you're a bad patient when you try to advocate for yourself, one, it's discouraging. I don't wanna go back and see another doctor to just be told I'm being a brat because I didn't feel like I was. I was trying to be respectful. And then two, I don't need, like you need someone who's gonna go on that journey with you. You need someone to take you by the hand and say, you're not alone in this. I'm gonna help you find out what's going wrong. And if we can't figure it out, we're in that together. I'm not just gonna push you out the door to try to send you off to someone else. And I don't think that there are many people in medicine who do that. Well, it's hard to do that because if you're really nice but you can't fix the problem, there's no reason for you to go and see them. Yes and no, I think that is something primary care provider should be doing more of is if, how many times, think about this, because I can think about it for myself. The amount of times that I've seen a primary care provider and we've talked about what's going on, and they say, okay, what do you wanna do about this? And I say, well, I'd like to see some specialist, maybe. And they say, okay, I'll send you to a neurologist. Not, okay, let's send you to the specialist. If they don't have an answer, come back. Come back, you can come back and I can read those results, see what that specialist said. And if it doesn't help you, we're gonna figure out what to do next and we're gonna figure that out together. I'm not gonna leave you alone. Yeah, I mean, I think the goal in this case is not necessarily to have a primary care provider who knows what the answer is, but somebody who will help you find somebody who knows what the answer is. You've found the basic neurologist that looks at the normal neurological tests in their routine, but now you need the weirdo neurologist that looks at the weirdo tests and the weirdo symptoms in their routine. Yeah. And you just gotta find that person. And that's where we're at. But I think that the take-home message from this video is, one, learn about your body, figure out what you're feeling, and I think something that Lance did not say that's really important, learn about systems because that's how specialists are broken up. So the reason I had to see a cardiologist is because some of my symptoms, like light-headed and dizziness, can be associated with cardiological issues, which is why they said you need to see a cardiologist and a neurologist because it could be either of those things. So figuring that out, what the systems are doing, what systems your symptoms are associated with so that you understand the specialists that you're seeing and why you're seeing them is really important. Speak up for yourself. If you don't like a medic, if the doctor says, here's what's wrong with you, here's your medication, buy, and they're not explaining to you what it's for, ask. Yeah, if you don't know, just ask. They are rushing out, but they'll probably still answer you, you know? Ask your questions. Ask what this test is trying to find. Ask what this medication is gonna treat. Ask what they think is wrong with you. I've had, I've seen patients that have seen doctors who they leave given a prescription drug to take for the rest of their lives and don't even know what their diagnosis is, which is insane. Which is insane. Sorry, dead battery. Insane. I don't remember now. But just, so- You're saying learn about systems. Learn about systems, ask questions, and if you don't feel like you're getting good care, don't let that shut the door for you. It just- If someone tells you you're a bad patient, that doesn't mean you're a bad patient. It means you need to find another doctor. Yeah. So try not to get too discouraged. If you're not happy with your care, don't let that discourage you from seeing all providers because I'm not gonna get better. Things are getting worse. So her saying, you're fine, doesn't mean I'm fine. It doesn't mean that I'm healed and I can't just accept that she said I'm fine and move on because things are getting worse. And so if I don't advocate for myself and continue my journey myself, I'm gonna get a lot worse. Who knows how much? So you have to kind of stick with it and find a support system, whether that's a really good primary care physician, whether that's a partner, whether that's a family member or a friend, find someone to help you with your journey. Don't just give up. And the other stuff that I always talk about on this channel is like, just be healthy, take care of yourself, do stuff. Even if it's not gonna solve your sickness, I think you should put a lot of energy into solving your sickness, but you should also sleep and eat vegetables, which we're cooking right now. Taking care of myself is how I've treated myself for the past eight years. And only until recently, living in the hottest place in the world is when I started to get really sick. So, and even then I manage my symptoms. Like I can function, I worked out today, which is huge because in the past that wouldn't ever happen. So I do have moropathy, I do have progressing symptoms, but I can still manage my baseline well enough with diet, lifestyle, exercise, sleep that it's not as bad as it could be. And I could be slowing it down or helping my body reduce the inflammation that's triggering these symptoms. So I'm gonna keep going on my journey. You should keep going on your journey and really, really advocate for yourself because to Lance's point, okay, I like to think that providers care a lot about their patients because I care a lot about the people I've worked with in the past. And I feel like sometimes I care more because I think about you and you don't do the things that I tell you to do that I tell you are gonna make you better. So that's hard for me because I say, if you just exercise and go for a walk every day, you're gonna feel a lot better and then people don't do that. That's frustrating for me as a provider, but it doesn't mean I quit and push them off onto a different person. I mean, I need to provide you better guidance and better explanations as to why this is important. But advocate for yourself, stand up for yourself because you know your symptoms, they can't interpret and understand what you're feeling. Speak up for yourself, ask questions and don't stop trying just because one or two doctors, you don't really like them and you don't like the answers that they're giving you. Yep, and keep learning. Thanks for watching. If you learned something, hit the like button and subscribe to be notified when we release new videos. If you need something else to watch, well, maybe tea time 001. Also drink tea, tea is delicious. The other tea time, we talked about other health stuff. So you might like that podcast style. And stay tuned because I get my cholesterol checked next week and hopefully it's a good result. And if so, we'll be doing a video about all the stuff I did to help lower it. And if not, we'll put it off. Maybe about how embarrassed I am that it didn't work. Thanks.