Unknown condition, overheating / heat stroke. Any help?

Posted by skidmarkwarrior @skidmarkwarrior, Thu, Jan 3 11:30am

Hey guys. I am getting desperate and I don't know what else to do! Maybe if my story can spread around the internet, someone might be able to help.

TL;DNR: For the past 20-something years, I have been extremely sensitive to heat and my body overheats with even the slightest bit of physical activity, even when ambient temperature is cool. I've had many blood samples drawn over the years, and tested for all kinds of thyroid/endocrine conditions, and everything always comes back normal. My condition is getting worse, I feel like crap every day, and I now have extreme fatigue and exhaustion to the point where I can't stay awake at work. Depression is hitting me hard because I just can't do anything with my life because of this condition. Thank you for taking the time to read this. Here's my story in detail:

I am a 36 year old male, 270 pounds, born and raised in California. As a kid, I was "husky", but not obese, though I started leaning out around 12 years old. When I was about 14, during summer vacation, I was in my back yard playing basketball with a friend. It was hot out, being summer in the dry, California high desert, 95+ degrees, but hey, I've been here my whole life; I'm used to it. The garden hose was nearby, and we were spraying each other and drinking plenty while playing, and my mom would always make sure there were pitchers of Gatorade powder mixed and ready to drink when I come inside. Well, this one day hit me extra hard, and shortly after having dinner, I was in bed, shivering and barfing my guts out. I was in bed for almost 2 days. It felt a lot like a severe flu, but it was clearly not a viral infection. Ever since that day, I have been WAY too sensitive to warm weather.

I am comfortable in shorts and a t-shirt when it's in the 50s and 60s, and once the weather weather gets into the mid-70s, I get pretty uncomfortable. 80 degrees and I get cranky, and once the weather gets above 90 degrees, I literally can't do anything but sit in front of the air conditioner. Just walking across the mall parking lot to my car in the summer will make me dizzy and nauseous. I get a pulsing dull headache, my muscles become weak, and if I'm out in the heat much longer, cognitive abilities start to decline.

Now, I am typically an active person (or, I would be if I didn't feel like I was dying). I love weight lifting, Brazilian Jiu Jitsu, Yoga, and hiking. Ever since my first experience with heat stroke, though, I have just steadily gained weight. This, of course, just made my condition worse. I still wasn't getting like morbidly obese or anything, but I did have a bit of a spare tire in my prime. Through my 20s, I stayed as active as I could, but the heat always put me out of commission, and I could never seem to keep my weight down. In my early 30s, I lived in a ski town and worked as a valet/bellhop at a 7 story hotel. That job kept me VERY active, having to use the stairs when elevators were full of guests, carrying people's ski equipment everywhere, and running through the underground garage to bring cars up to the lobby. While working this job, I was Practicing Brazilian Jiu Jitsu and Yoga 2-3 times a week, weight lifting 2 times a week, and a couple times a month outside of ski season, I would go for hikes out in the mountains. Even with all of that, I could never lose weight and get in shape. I had quite a gut at this time, and could never get my weight under 220 pounds. And during all of that physical activity, I would ALWAYS feel totally drained and on the verge of vomiting. Overheated and weak, I had to end my session with a cold shower, otherwise I would get really sick. I have passed out when overheating many times.
Now that I'm getting older, this condition is getting worse, and I am getting fatter. I'm stuck in a vicious cycle, and there is absolutely no clue as to why I am like this. I overheat so badly now, just walking 4 blocks from home to the post office and back, in 60 degree weather, I get nauseous, headache, dripping with sweat, and have to immediately take a cold shower, then pass out for a couple hours.

I have seen 4 general practitioners, 3 endocrinologists, and 1 cardiologist in just the past 4 years. I've had complete blood work done 4 times in those 4 years, with every single test showing normal. I am over $2,000 in medical debt.

I can't take this any more. And if I get sick just taking a walk in the middle of winter in Los Angeles, I dread the thought of what the L.A. summer will be like.

I just want to know if anyone has heard of these symptoms before. I have spent many hours researching these symptoms, and nothing is ever a close match. Thyroid conditions are always the ones coming up in my searches, but my blood panels always show T3/T4,etc. levels perfectly normal.

Well, if you made it this far, thank you for reading all of that! Any help and guidance would be appreciated. Right now I have Kaiser Permanente medical insurance through my work, so anything I could do through them would be great.

@skidmarkwarrior I moved from PA where the climate is colder ,rainy,winter also humidity was always high When I moved to California I sweat all year round took sometime to adjust to the low humidity. If I could I'd go further north then n California to be more comfortable maybe going to a cooler climate as an experiment would help,just s suggestion

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@lioness

@skidmarkwarrior I moved from PA where the climate is colder ,rainy,winter also humidity was always high When I moved to California I sweat all year round took sometime to adjust to the low humidity. If I could I'd go further north then n California to be more comfortable maybe going to a cooler climate as an experiment would help,just s suggestion

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@lioness , thank you for sharing! If it were possible, I'd just move to Toronto or Seattle… But I don't have the money or skills to be able to move. My problem still persists in cold weather, too, though. I used to live in a ski resort town, and I would break into a sweat walking to the grocery store when it was literally below freezing outside!

Liked by lioness

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@skidmarkwarrior Sorry I couldn't help

Liked by skidmarkwarrior

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@skidmarkwarrior I really feel for you. Obviously, you are miserable with this heat condition. It sounds as if you have done considerable research yourself, but that is not always fruitful. I had non-alcoholic cirrhosis and prior to being diagnosed, which took around 17 months, I did a lot of research but never hit on cirrhosis for some reason and I'm a pretty good researcher. I know my doctor was working on it too but apparently he did not hit on cirrhosis either. Do you have any other symptoms, even some that may not seem related, that you could add to your search criteria?

I know it's costly but if I were you I would try to go to the best medical center possible. If you need to stay local, have you been to Cedars or UCLA medical center? The most apt cause is thyroid of course but if your thyroid tests are normal that is ruled out I guess, although I have read somewhere that you can have a normal TSH but may need to have other thyroid tests, I don't know if T3 and T4 are those other tests of if there are more. Also, being overweight is, of course, contributing to overhearing. I presume you have tried to lose weight. I know that battle myself, and it is not easy. I managed to do it, primarily because I needed a liver transplant and I knew I would have an easier recovery if I was not carrying as much weight.

I do of course know you, yourself, have researched, but have you seen these articles? I generally rely on Mayo and NIH for health information but I couldn't find anything on NIH and I think HealthLine and WebMD are also considered to be fairly respectable.
https://www.healthline.com/symptom/heat-intolerancehttps://www.webmd.com/a-to-z-guides/ss/slideshow-why-always-hothttps://www.mayoclinic.org/diseases-conditions/heat-exhaustion/symptoms-causes/syc-20373250
I hope you find some help soon, I can imagine what you are going through.
JK

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@contentandwell

@skidmarkwarrior I really feel for you. Obviously, you are miserable with this heat condition. It sounds as if you have done considerable research yourself, but that is not always fruitful. I had non-alcoholic cirrhosis and prior to being diagnosed, which took around 17 months, I did a lot of research but never hit on cirrhosis for some reason and I'm a pretty good researcher. I know my doctor was working on it too but apparently he did not hit on cirrhosis either. Do you have any other symptoms, even some that may not seem related, that you could add to your search criteria?

I know it's costly but if I were you I would try to go to the best medical center possible. If you need to stay local, have you been to Cedars or UCLA medical center? The most apt cause is thyroid of course but if your thyroid tests are normal that is ruled out I guess, although I have read somewhere that you can have a normal TSH but may need to have other thyroid tests, I don't know if T3 and T4 are those other tests of if there are more. Also, being overweight is, of course, contributing to overhearing. I presume you have tried to lose weight. I know that battle myself, and it is not easy. I managed to do it, primarily because I needed a liver transplant and I knew I would have an easier recovery if I was not carrying as much weight.

I do of course know you, yourself, have researched, but have you seen these articles? I generally rely on Mayo and NIH for health information but I couldn't find anything on NIH and I think HealthLine and WebMD are also considered to be fairly respectable.
https://www.healthline.com/symptom/heat-intolerancehttps://www.webmd.com/a-to-z-guides/ss/slideshow-why-always-hothttps://www.mayoclinic.org/diseases-conditions/heat-exhaustion/symptoms-causes/syc-20373250
I hope you find some help soon, I can imagine what you are going through.
JK

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@contentandwell , Thank you for your time! I have already been to UCLA about 3 years ago. Nothing but a big medical bill came out of that. My only other symptoms that may or may not be related is the feeling of hypoglycemia. I've had glucose tests and use glucose monitors for a couple months, and my blood sugar always looks normal, even though I feel weak, shaky and overall ill. Eating always makes me feel better when that happens.
My weight gain is also snowballing my condition. I can't exercise properly because of the overheating, which makes me gain weight, which then makes my overheating worse, etc. At this point, I have to pick between exercising for my health or working for a living. I can't do both because of how sick I get when I exercise. It's very frustrating, because I love being active. I actually fantasize about being able to ride a bicycle to work instead of driving. Yes, that's how bad it's getting. Riding a bike to work is a fantasy to me, like owning a Lamborghini is to others.
And thank you for the links! I have come across all those pages before, but I still revisit them, comb a little more, refine searches and click additional links. It's just so weird that I seem to have such specific symptoms that don't fit any known disease, and the closest possibilities have been checked several times and always proves negative.
I will be getting an MRI done on my head, but, you know, I'm really not expecting anything to show up. One more thing to check off the list, though.

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@skidmarkwarrior

@contentandwell , Thank you for your time! I have already been to UCLA about 3 years ago. Nothing but a big medical bill came out of that. My only other symptoms that may or may not be related is the feeling of hypoglycemia. I've had glucose tests and use glucose monitors for a couple months, and my blood sugar always looks normal, even though I feel weak, shaky and overall ill. Eating always makes me feel better when that happens.
My weight gain is also snowballing my condition. I can't exercise properly because of the overheating, which makes me gain weight, which then makes my overheating worse, etc. At this point, I have to pick between exercising for my health or working for a living. I can't do both because of how sick I get when I exercise. It's very frustrating, because I love being active. I actually fantasize about being able to ride a bicycle to work instead of driving. Yes, that's how bad it's getting. Riding a bike to work is a fantasy to me, like owning a Lamborghini is to others.
And thank you for the links! I have come across all those pages before, but I still revisit them, comb a little more, refine searches and click additional links. It's just so weird that I seem to have such specific symptoms that don't fit any known disease, and the closest possibilities have been checked several times and always proves negative.
I will be getting an MRI done on my head, but, you know, I'm really not expecting anything to show up. One more thing to check off the list, though.

Jump to this post

@skidmarkwarrior I know gyms can be costly, but they are generally air-conditioned. My son recently moved from L.A. (Hermosa Beach) to Denver and I know his gym was a bit expensive but his fiance went to a less expensive one. Generally the Ys have good gyms also, and I don't know if Planet Fitness is national but it is fairly inexpensive and many young people go there.

I was quite overweight prior to my cirrhosis diagnosis but I managed to lose weight. It was difficult to get started because I was hungry all of the time but that did pass. I also find that when my will-power gives out it is best to not have many tempting things around the house. With me, weight is a constant battle.

I hope/presume you must work in at an air-conditioned place. I had the opposite situation with cirrhosis, I was always cold so I am familiar with what it is like to not be comfortable due to temperature, as I am too familiar with the frustration of not having a diagnosis. Despite my diagnosis not being good, it was in some ways a relief to know what my problem was.

What are they looking for with the MRI? I have had MRIs but never on my head, I didn't even know they did that. Please keep us up to date.
JK

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@contentandwell

@skidmarkwarrior I know gyms can be costly, but they are generally air-conditioned. My son recently moved from L.A. (Hermosa Beach) to Denver and I know his gym was a bit expensive but his fiance went to a less expensive one. Generally the Ys have good gyms also, and I don't know if Planet Fitness is national but it is fairly inexpensive and many young people go there.

I was quite overweight prior to my cirrhosis diagnosis but I managed to lose weight. It was difficult to get started because I was hungry all of the time but that did pass. I also find that when my will-power gives out it is best to not have many tempting things around the house. With me, weight is a constant battle.

I hope/presume you must work in at an air-conditioned place. I had the opposite situation with cirrhosis, I was always cold so I am familiar with what it is like to not be comfortable due to temperature, as I am too familiar with the frustration of not having a diagnosis. Despite my diagnosis not being good, it was in some ways a relief to know what my problem was.

What are they looking for with the MRI? I have had MRIs but never on my head, I didn't even know they did that. Please keep us up to date.
JK

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@contentandwell , sorry for not replying sooner! I've had a rough week.
I actually just cancelled my gym membership a few weeks ago! I haven't been able to go in over a year, so I had to cut it loose. My problem is that any physical activity makes me overheat, no matter what temperature it is. I've lost a job doing night stocking in the dairy cooler at WalMart because I was getting sick, dripping with sweat in a 34 degree walk-in, putting milk jugs on the shelf.

I have been cutting way back on how much I eat for the past 2 years. I don't count calories, but I am doing good on portion control lately. I seriously eat half the amount i used to eat, say, 5 years ago. Crazy thing is, I gained weight ever since I started eating less! I wish I could try an intermittent fasting diet, but I get severe hypoglycemic symptoms when I go too long without eating. I've used a glucose monitor and had tests done, and my blood sugar is always normal, but if I go too long without food (5+ hours), I feel a hard crash and I get REALLY sick.

I had to quit my fun, well-paying job as a bartender because of my condition, and had to resort to an entry level office job, so now I am way less active than before, and making half the money I used to. Even in this nice, air-conditioned building, I'm wearing shorts and a t-shirt, still uncomfortably warm, while everyone else here are wearing jackets at their desks!

Man, it just sounds like I have excuse after excuse. It just all seems so hopeless, though. And not knowing what's wrong is making me go crazy. It's like, seems like there's nothing wrong with me, nothing can be proven, so is this all in my head? I often question reality because of all this.

Also, my MRI head scan is scheduled for today, and I guess my doctor is just going to see if it looks normal. He said "who knows? What if we find a mass that could be pushing on something?". I mean, we both think that's highly unlikely, but I really have nothing else to go off of, so we might as well scan my brain to check it off the list.

I can imagine how much of a relief it must have been for you to finally find out about your cirrhosis. At least you now have a reason for what's happening. That's all I want right now… a reason. There is no reason for this. If I was told my condition is happening from a brain tumor, but it's terminal and I have 1 week to live, hell, I'd be fine with that, just because at least now I would know!

Well, I have to get back to work. Thanks for keeping in touch!

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@skidmarkwarrior

@contentandwell , sorry for not replying sooner! I've had a rough week.
I actually just cancelled my gym membership a few weeks ago! I haven't been able to go in over a year, so I had to cut it loose. My problem is that any physical activity makes me overheat, no matter what temperature it is. I've lost a job doing night stocking in the dairy cooler at WalMart because I was getting sick, dripping with sweat in a 34 degree walk-in, putting milk jugs on the shelf.

I have been cutting way back on how much I eat for the past 2 years. I don't count calories, but I am doing good on portion control lately. I seriously eat half the amount i used to eat, say, 5 years ago. Crazy thing is, I gained weight ever since I started eating less! I wish I could try an intermittent fasting diet, but I get severe hypoglycemic symptoms when I go too long without eating. I've used a glucose monitor and had tests done, and my blood sugar is always normal, but if I go too long without food (5+ hours), I feel a hard crash and I get REALLY sick.

I had to quit my fun, well-paying job as a bartender because of my condition, and had to resort to an entry level office job, so now I am way less active than before, and making half the money I used to. Even in this nice, air-conditioned building, I'm wearing shorts and a t-shirt, still uncomfortably warm, while everyone else here are wearing jackets at their desks!

Man, it just sounds like I have excuse after excuse. It just all seems so hopeless, though. And not knowing what's wrong is making me go crazy. It's like, seems like there's nothing wrong with me, nothing can be proven, so is this all in my head? I often question reality because of all this.

Also, my MRI head scan is scheduled for today, and I guess my doctor is just going to see if it looks normal. He said "who knows? What if we find a mass that could be pushing on something?". I mean, we both think that's highly unlikely, but I really have nothing else to go off of, so we might as well scan my brain to check it off the list.

I can imagine how much of a relief it must have been for you to finally find out about your cirrhosis. At least you now have a reason for what's happening. That's all I want right now… a reason. There is no reason for this. If I was told my condition is happening from a brain tumor, but it's terminal and I have 1 week to live, hell, I'd be fine with that, just because at least now I would know!

Well, I have to get back to work. Thanks for keeping in touch!

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@skidmarkwarrior I hope the MRI does show something. My problem ended with my liver transplant, but as I commented and you did also, knowing what the problem is, helps. Yep, it was a bit depressing at first since cirrhosis is a life threatening condition, but I got over that. My husband was concerned about my being depressed but as my PCP said, it was "justifiable depression" and it did not last long enough to be chronic.
If you do get a diagnosis finally then try to remain positive, no matter what it is. I firmly believe that attitude is a very big part of succeeding in our health battles.
Please let me know how the MRI turns out.
JK

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Well, brain scan came back 100% normal…

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@skidmarkwarrior

Well, brain scan came back 100% normal…

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@skidmarkwarrior That's good, that it was normal, but what's next? It must be so very frustrating to not know what is causing your problem.
JK

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Not sure if this can help you but I live in NYC where we experience all types of temp and weather. Ever since I went on corticosteroid eye drops, i have dealt with a cortisol hormone disorder where it is elevated. I tend to notice that I get dizzy and uncomfortable when temps get above 90+ and/ or it is humid. My BP will go up by around 15 systolic /5 diastolic. Not sure if you sure focus in to your cortisol levels

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@nycdave7

Not sure if this can help you but I live in NYC where we experience all types of temp and weather. Ever since I went on corticosteroid eye drops, i have dealt with a cortisol hormone disorder where it is elevated. I tend to notice that I get dizzy and uncomfortable when temps get above 90+ and/ or it is humid. My BP will go up by around 15 systolic /5 diastolic. Not sure if you sure focus in to your cortisol levels

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@nycdave7 Thank you for contributing!
Your condition sounds just like mine, except it starts at 80 degrees. But I have done a 24 hour urine collection to test cortisol levels twice in the past year, and both times was completely normal!

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Hey guys. I am getting desperate and I don’t know what else to do! Maybe if my story can spread around the internet, someone might be able to help.

TL;DNR: For the past 20-something years, I have been extremely sensitive to heat and my body overheats with even the slightest bit of physical activity, even when ambient temperature is cool. I’ve had many blood samples drawn over the years, and tested for all kinds of thyroid/endocrine conditions, and everything always comes back normal. My condition is getting worse, I feel like crap every day, and I now have extreme fatigue and exhaustion to the point where I can’t stay awake at work. Depression is hitting me hard because I just can’t do anything with my life because of this condition. Thank you for taking the time to read this. Here’s my story in detail:

I am a 36 year old male, 270 pounds, born and raised in California. As a kid, I was “husky”, but not obese, though I started leaning out around 12 years old. When I was about 14, during summer vacation, I was in my back yard playing basketball with a friend. It was hot out, being summer in the dry, California high desert, 95+ degrees, but hey, I’ve been here my whole life; I’m used to it. The garden hose was nearby, and we were spraying each other and drinking plenty while playing, and my mom would always make sure there were pitchers of Gatorade powder mixed and ready to drink when I come inside. Well, this one day hit me extra hard, and shortly after having dinner, I was in bed, shivering and barfing my guts out. I was in bed for almost 2 days. It felt a lot like a severe flu, but it was clearly not a viral infection. Ever since that day, I have been WAY too sensitive to warm weather.

I am comfortable in shorts and a t-shirt when it’s in the 50s and 60s, and once the weather weather gets into the mid-70s, I get pretty uncomfortable. 80 degrees and I get cranky, and once the weather gets above 90 degrees, I literally can’t do anything but sit in front of the air conditioner. Just walking across the mall parking lot to my car in the summer will make me dizzy and nauseous. I get a pulsing dull headache, my muscles become weak, and if I’m out in the heat much longer, cognitive abilities start to decline.

Now, I am typically an active person (or, I would be if I didn’t feel like I was dying). I love weight lifting, Brazilian Jiu Jitsu, Yoga, and hiking. Ever since my first experience with heat stroke, though, I have just steadily gained weight. This, of course, just made my condition worse. I still wasn’t getting like morbidly obese or anything, but I did have a bit of a spare tire in my prime. Through my 20s, I stayed as active as I could, but the heat always put me out of commission, and I could never seem to keep my weight down. In my early 30s, I lived in a ski town and worked as a valet/bellhop at a 7 story hotel. That job kept me VERY active, having to use the stairs when elevators were full of guests, carrying people’s ski equipment everywhere, and running through the underground garage to bring cars up to the lobby. While working this job, I was Practicing Brazilian Jiu Jitsu and Yoga 2-3 times a week, weight lifting 2 times a week, and a couple times a month outside of ski season, I would go for hikes out in the mountains. Even with all of that, I could never lose weight and get in shape. I had quite a gut at this time, and could never get my weight under 220 pounds. And during all of that physical activity, I would ALWAYS feel totally drained and on the verge of vomiting. Overheated and weak, I had to end my session with a cold shower, otherwise I would get really sick. I have passed out when overheating many times.
Now that I’m getting older, this condition is getting worse, and I am getting fatter. I’m stuck in a vicious cycle, and there is absolutely no clue as to why I am like this. I overheat so badly now, just walking 4 blocks from home to the post office and back, in 60 degree weather, I get nauseous, headache, dripping with sweat, and have to immediately take a cold shower, then pass out for a couple hours.

I have seen 4 general practitioners, 3 endocrinologists, and 1 cardiologist in just the past 4 years. I’ve had complete blood work done 4 times in those 4 years, with every single test showing normal. I am over $2,000 in medical debt.

I can’t take this any more. And if I get sick just taking a walk in the middle of winter in Los Angeles, I dread the thought of what the L.A. summer will be like.

I just want to know if anyone has heard of these symptoms before. I have spent many hours researching these symptoms, and nothing is ever a close match. Thyroid conditions are always the ones coming up in my searches, but my blood panels always show T3/T4,etc. levels perfectly normal.

Well, if you made it this far, thank you for reading all of that! Any help and guidance would be appreciated. Right now I have Kaiser Permanente medical insurance through my work, so anything I could do through them would be great.

Liked by Leonard

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Hi @skidmarkwarrior you may have noticed I moved your post to the discussion you started in January. You mentioned in late January that you had a normal brain scan. Have you had any other tests since then?

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@ethanmcconkey

Hi @skidmarkwarrior you may have noticed I moved your post to the discussion you started in January. You mentioned in late January that you had a normal brain scan. Have you had any other tests since then?

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Hello, @ethanmcconkey . Yeah, I'm getting desperate for any help, so I did copy and paste my original post into a different category, hoping it would get a larger audience.

So far, no other tests have been done, but I am scheduled for a 48 hour heart thing. Forgot what it's called, but I guess they stick some things to my chest and monitor my heart for 2 days. Aside from that, my current doctors kind of…. stopped talking to me.

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