@@zebruh2794 if some uses this to get pain killers or sickleaves, it doesn't make it an excuse to not beleive a patient. Especially with kids.. Kids don't fake it you can tell I've worked in health care and still for 9 years now. Never underestimate ur patient and always listen.
Can't blame you too much there, the impression I get is that, what if the family has to use daycare, or otherwise in public with the first story, being verry easy to be judged by others, esp when there is no retort to use.
@Joey Sal, I thought we were talking as if was an adult was in pain, not as if the kid was in pain, I understand your point but you should realize there are some kids who would fake it (I not say that she fake it) just so they don't do something.
@@zebruh2794 my comment is for the 1st story, the girl with pain being R/O as 'kids tantrum' if we have more doctors that don't assume pain is faked we wouldn't watch such series because all of them starts because more than one doctor assuming what he thinks not what a patient says. So ethically you can't say 'well you are faking it' it is not ethical at all to dismiss pain as 'faking it' I've had a 7 years old pediatric patient who did told her mom and pediatrician that her tummy aches, severe episodes of pain, 1st time the pediatrician said 'she's just spoiled, seeking attention' discharged them from the ER home, the very next early morning the family went to the ER, same thing, she's faking it. The mother insisted to do an echo abdo pelv she started shouting that the doctor doesn't even listen or beleive! The kid had intestinal occlusion that it needed surgical intervention. That's how dismissing pain is risky.
Even better, the response to her "throwing a fit" from the pain was to restrain her and hold her down, causing even more pain. It probably only stopped once all her endurance and neurotransmitters were exhausted, literally causing her to lose consciousnesses from pain.
So, basically, Taylor's doctors, when they didn't know what was happening to her and why, just dismissed her pain. I often wonder why doctors can't just admit they don't know. Ego gets in the way.
Sometimes they just do that to calm the parents down. You can't confirm something that you can't be sure of. Giving negative comments just make it much worse for the family.
ANY doctor would have said the same. They are not trained in the spiritual or the natural. Only in toxic and deadly drugs and "treatments" to treat the diseases that THEY create! It's a major scam. I avoid doctors now. I was in the same boat as the people on this show. Turns out its spiritual blockages that cause these wide variety of symptoms and mimic or can manifest to physical illness. Diet is important. Vibration is important. Avoiding drugs is important. Etc.
@@cy4330 you're right, and docs didn't studied for years and get a license and lose it by false diagnosis. specialist are needed in this kind of cases.
A child literally screaming "it hurts" during episodes and they dont believe shes in pain...okay. how do these doctors pass medical school when half of them dont believe patients?? ugh
I completely understand how frustrating it is that they don't believe that someone is in pain. I have to deal with that when I am in pain. But then I also think about how many people faked pain to get pills. But if a young girls skin is red and she is screaming then obviously she is in pain.
They're dehumanized during medical school. It's not getting any better, either. We need to overtake our healthcare system, and demand change and put a stop to the greed and make healthcare a ministry. It should not, nor should it havve ever been an industry.
I’m a nursing student and we’re told to always trust our patient as pain is subjective and only the patient truly knows how they feel, but often the patient will say they’re pain is extremely high (due to them not really understanding the pain scale) and their vital signs don’t correspond with it.
When my son was a 3 month old baby he caught the staph blood infection Staphalococcus Scalded Skin Syndrome. This first 3 layers of his skin sloughed off over a third of his body and he was in hospital on IV antibiotics and morphine for 5 weeks. Every day for a week before diagnosis I took him to my gp who gave him oral antibiotics and told me I was being overwrought and a neurotic first time mum. My baby couldn't even wear nappies because of the pain and was screaming in pain and the gp told me my baby wasnt in pain. After a week I took him to A&E and they said it was the worst case of Scalded Skin Syndrome they'd seen. I no longer just accept what doctors say. I listen to my child and I listen to my gut. I take notice of EVERYTHING. My 3 month old could have died. Literally a third of his body was raw seeping wounds. Doctors need to start listening to parents, this is a lot of the reason why people die from preventable diseases like septicaemia, because doctors dont always take note of all the symptoms. Dont ever just accept what they say. Read and do research.
I just searched her up to see how she's doing today and she passed away in January 2021. I couldn't exactly find her cause of death. She was apparently a missing person too, but was found safely in 2020. Rest in peace Taylor😔💜💐🌸
Yeah, Google literally saved my life. I absolutely received an official diagnosis after I figured it out, but a vEDS, Marfan's and Arnold-Chiari diagnosis at the age of 26 shaved about 30 years off of my life expectancy.
Yes, and how come the doctors don't google it? Its like they are arrogent come to their own decision and won't question it as they can't possibly be wrong!!!
It's a step or two up from Peripheral Neuropathy - a disorder in which the insulating 'covering' of the nerves is attacked - no cure & little relief from the pain. I have a great deal of empathy for the parents & their child. MD's, need a different kind of education - one which heals folks rather than keeping them in a constant state of unwellness, just so the MD's, get a better salary or reputation ( my GP, in particular, & a hospital Speacilist are like that - the hospital speacilist, now listens to their clients, as I'm the only client they have who reacts badly to pharma drugs & they don't know how to help, as they've learnt the wrong type of medicine. At least one Dr, is learning new tricks, as a result of one client who has beaten them at their own game - using common sense & alternative Materia Medica. Namaste 🙏
Watching the video footage of her as a baby having episodes in the hospital was one of the scariest things I've ever seen. My heart sank every time. I can't even begin to imagine what these parents went through.
Lacey Brown I cried every time because when my baby girl was three months she was air lifted and had turned blue it was horrible to see it over again every time they showed it my eyes just poured out. Scariest feeling and as a parent you just have to sit there you feel helpless because you can’t do anything to make it stop.
@@fizarrah Oh my goodness. Is your daughter ok now? I totally understand what you mean. I'm a parent too. I know this isn't the same, but easily the scariest moment of my life was a time when I found my son on the brink of unconsciousness choking on a water bottle lid. I think that's the only time I've ever screamed in absolute terror. I thought he was dead. He was about 18 months old and I was in our laundry room while he was watching cartoons in the living room. And for no reason in particular I felt like I urgently needed to check on him. I'm so thankful that I did
Do not underestimate what a mother can do for her child. They are powerful and intelligent than a doctor, stronger than superman just to find out what her child was experiencing.
Taylors family are fantastic, especially her mum. Imagine bringing home a newborn and having to watch him/her every second of the day! She did a great job, and then she also managed to find out what her daughter has, she is truly inspirational.
@@sakshivijayvargia6588 unfortunately Taylor passed away in January of 2021, I was searched about it and I found her mom Facebook with very many posts saying how she missing of her daughter and of course pictures. Wasn't clear for me what's happened, all that I understood was she needed to go hospital and was victim of malpractice
I can & it wouldn't have been pleasant, as I have Peripheral Neuropathy - a fatal nerve condition where the myalan sheath, which acts like an insulator, breaks down permanently. Namaste 🙏 💟
I always dont understand the blaming of the doctors in the comments of these episodes. 8 people around the world have this condition, I think it's understandable they didn't think of it. The mother searched for an answer every free minute, of course she was the one to find the solution. Doctors are really just doing the best they can. I am in med school atm and already and I am getting scared reading the comments here. Diagnosing someone is a puzzle you have to solve, that sometimes takes time and sometimes you are wrong. We are just humans doing our best
i believe the issue is doctor not believing their patients when they don't know what the diagnosis is. So just because you've never seen a particular condition doesn't mean that the patient isn't being honest
I fully agree with you (i gave your comment a like) but in my experience, it is a fact that some doctors (and they are not rare) clearly don't do their best, and even simply don't do anything. I almost died twice because of them... I still trust doctors and the medical system but I've learned that patients must retain at all time their critical thinking and their ultimate sense of responsibility for their own health. But these qualities are not taught in any educational system...
Its not about not finding the answer, its about not looking for it. The doctors and sloppy medical procedures in these stories are so lacking of quality, that i feel like, to make these stories smooth, they must surely leave some stuff out. Otherwise all these sories really are "Medical failures", and not "medical mysteries". I mean, can you imagine sending a baby with daily heart stops home with a CPR course for the mum only? That would be insane.
Watching these series I’m so grateful for my GP. He always takes me serious and actually listens to me. Just because you don’t understand what’s going on, that doesn’t mean it’s not there or it’s all in the head
Livelifelaugh, I actually changed doctors four times until I finally found a practice with three angels. Strangely enough it was a Dr. I worked with. I was just so impressed with the way he listened to his patients and diagnosed them accurately I asked him if was accepting new patients, he says "for you, anything".
Respect to that family... They performed CPR more often than some first aiders on regular annually test I assume... And wow how that little body was tough enough to survive so many heart insufficencies/ attacks (not sure how you call it)
Man.....when she started talking about her issues with the dizziness & forgetfulness, I just about cried. I suffered a serious brain injury from a horse accident back in 2008 that I continue to still deal with some of the symptoms to this day that will never go away for the rest of my life. I know what that's like. I've had several MRIs with contrast & thank goodness for it. I feel for her in this way. I'm so glad that they were able to help her!
Amen, well said!!! I had an 8 month in first year resident falsely accuse me of Munchasens by proxy when my daughter has been diagnosed with gastrointestinal problems! CPS removed my children over an arrogant doctor. I have such anger towards doctors!
They are trained in listening to patients, at least in the UK...and they still repeatedly ignore patients because their arrogance gets the better of them or they've 'been in this job 20+ years and have seen everything before' blah blah blah! Maybe they should be held more accountable, but they'd also be accused of putting people through unnecessary procedures. It's a fine line between the two, but from what I've seen/experienced they're a LONG way off accusations of doing too much.
Its practically impossible to learn every disease. We even know more about space and physics than our body. It is wrong to blame the doctors alone. It depends on the University/college/professor/study plan. They just cant teach you in med school about every disease that maybe 10 people had just like you cant possibly teach history about every person that has been alive at a certain time period. Many diseases are discovered just now. Many treatsment are discovered just now. There is a popular saying in med school that describes everything well: "if you hear hoove sounds, think of horses not of zebras". Because of this no doctor will diagnose you with lung cancer if you have a cough that is actually from the flu for example. Why teach something that happened maybe just a couple times instead of something that happens daily thousands of times.
@@jessicataylor7174 the Problem often is with patients that eventhough they may describe all their symptoms or their pain that many doctors see this as read off a medical book and so may think they do it for the drugs. However, I believe that a doctor and the patient have to work hand in hand. If your doctor wont listen to you then get another one. My little sisterd pediatrician doesnt take my sister serious anymore since my mom would come often to him with her with neurological problems he may never heard of. And such he said it is all in her head. So I have seen this happening. One of the main problems in my opinion is the lack of exposure of such patients and thus lack of experience or the doctors ego.
@@Vanessa-im6tb The people in this show all suffered for way too long, or sustained trauma/injuries that could've been avoided because their disease is rare. If all doctors watched this show just once, these symptoms would be in the back of their heads, and they might be able to diagnose way sooner. It's like a couple of days watching, but in a whole medical career that's nothing, if it could prevent unnecessary suffering of even one patient, that's so worth while.
I think that Taylor's disorder is one of the worst that I've seen in Mys.Diagnosis. She had been suffering, literally, since the day she was born and the worst part is that there is no cure. I hope that she is doing better now. : l
Nature wanted to sort it out when she was an infant, modern medicine did not let her. Sometimes, we do not help people, we just prolong the suffering. She is not doing better, she pased at 24 in January 2021.
@@andreabrava6899 Nature did not "want to sort it out". When someone is sick, you help them, especially when you don't know what's wrong. I understand she did not die from her condition either, so it doesn't fit the narrative at all.
i have always grown up being told by doctors im 'making it up'. 1 being i had a bone that grew between my ankle and heel. Kept saying i was lying and was nothing wrong....the dr was trying to refuse to book me in for a mri scan that was requested by my dr that sent me there. that mri is the thing that showed the bone was there. but it took about 7-8 years maybe longer to get there. NOW i think the same is happening on my other foot and i at least have history and my gp on my side but still pritty much going thru all the same stuff again
May I just say, one of my children couldn’t be held, not even to breastfeed. She was hot blooded and would overheat very quickly Doctors need to start listening to the mothers! A mum knows when something isn’t quite right.
Taylor: [literally has a condition with 'extreme pain' in its name] Paediatricians: it might be hard to believe because you're merely her parents but she's not in any pain
i can relate to these stories because i have a leg injury now for 3 years now, been to countless doctors and done numerous tests and scans but still no accurate diagnosis. i currently live with the pain and i pray i can find a solution soon
Try one of the alternative options like Naturopath, Iridologist, or Homeopath, Chinese Traditional Dr, Accupuncture, Aryuveic medicine ( Indian). You may find benifit from at least one of the professions mentioned. Namaste 🙏 💟
To save them you sometimes have to when there are no other options that you can think of. Not saying that the actions taken, or rather not taken, by the doctors were right or wrong. But as a doctor or medical staff in general you sometimes are confronted with something neither you nor any book can explain with the symptoms you are dealing or not dealing with. There are cases where there simply isn't enough time to take 635976349 tests and review studied cases in a meeting room. I don't want to seem disrespectful in any way so please don't take it like that, but what you say is partially correct. If you add a " in some cases" to it I'd hang it up my wall. Because usually a doctor does know what she or he is talking about and has reasons to take said decisions, or not to. Greets and I can understand your disappointment in the medical staff which surrounds her story, but please be aware that without doctors "playing the guessing game" saying we need to test this, this and that simply to see if any of those return positive an awfully amount of people would have been dead because the doctors simply said " nah we can't guess and test we need to know before doing anything". Tell me then, how can you know something without taking a guess in an unclear or never before seen situation. The job of a doctor or any medical staff is based around "guessing", or better said, testing to categorize the symptoms.
Yes, there's a dictum in American Medicine that says "when you hear hooves, think of horses, not of zebras". However, I went to Medical School in Spain, where my professor of Internal Medicine used to say "You'll never diagnose what you don't think about". We studied things we would probably never see. As a result I have a fair knowledge of Medical culture, but even then I acknowledge that there are hundreds, perhaps thousands, of diseases and conditions I've never heard about. For these I have two quotations from American doctors: "The best doctor in the World is the one who knows his/her limitations", and "the Medical library is the operating room of the Internist".
The doctors in Sweden don't see the zebras either. I was diagnosed with Ehlers-Danlos syndrome in 2013, I was born with it in 1967...I wish more doctors were thinking like you.
@@EleonorS I am glad you were finally diagnosed correctly. If you have Elehr-Danlos your doctor ehould be looking close at your aorta, because you have the risk of aortic aneurysm
@@faustofernandez2971 I know but my doctor wont refer me to examine it since I have EDS hyper mobility or type III and that's not the group with the highest risk. My current GP is not that interested and I think she's resentful that I was right about the EDS diagnose. It was much easier for her when she could dismiss my symptoms as being psychosomatic. I'm sorry about the negativity but as you might imagine I've met a lot of dismissive and even contemptuous doctors over the years. Thank you so much for the advice! /Eleonor
You will be (or already are) a fantastic doctor who this world needs. I’m a nurse who reveres doctors, especially since working in ICU and ED. Sounds like you have awesome mentors too. That’s what it’s all about 🙏🏼
Tracey is amazing how she kept going through all that pain and sickness. A lot of people would have given up and taken their own life. The neuro surgeon did a fantastic job, I'd definitely be sending him a Christmas card every year if I were her!
This what mother's LOVE can do! No any profession of any aspect can defeat or levelize in mothers love to solve any worst situation when it comes about their children.
Thanks, Reel Truth! This documentary series details both strange and familiar conditions in ways that keep you wondering up until they’re revealed, which is quite cool. Keep posting more episodes from this series if you can!
Excuse me..... she made appointments with Multiple doctors and NONE found Diagnosis and just send her off? wow. 5 years without diagnose, before age found a decent doctor who could help her?? Omfg. I am so glad I live in Europe....
Lol Indian doctors will admit him directly in the ICU or ICCU, and keep treating him (imaginary treatment ofcourse🙄😬) then give a huge bill to the patient's kin and if they are unable to pay they won't give the dead body😒
“Typically we don’t look for the Zebra in a field of horses…… but if the patient is persistent and the doctor is persistent, eventually we do find the zebras.” This resonated so hard with me, because after over 20 years of symptoms, I eventually found a doctor who wasn’t giving up until that zebra was found. That doctor changed my life - gave me my life back. They are out there. Nobody can be your advocate as well as you can be for yourself. If you know something is wrong, DON’T give up! Persist and find that doctor who believes in you and will go on that Zebra hunt with you.
Amazing stories! I really relate to Tracey's story. Back in 2009 I developed a migraine that I had to live with every single day of my life. I went to ER so many times to get help, and I was eventually referred to a neurologist. I was eventually diagnosed with chronic daily headache syndrome and was tried on so many different medications (including Botox!) to help reduce the pain. Nothing worked, so I eventually gave up all medications and I just try to live my life. Fortunately, a lot of the symptoms have settled down a little since I was diagnosed with kidney cancer and had treatment.
I can’t believe they sent the family home! Knowing this baby was stopping breathing! Crazy! I’m glad that last doctor didn’t dismiss them and tried to help! :)
They sent my daughter home on oxygen and a breathing alarm as she stopped breathing on a daily basis and several times a day she was a 26 weeker prem baby and came home at just under 7 months. This is quite normal your trained in cpr etc its just part of the life of having a child thats premature and they do grow out of it eventually 😁
@@lost619 it is very scary but you do get used to it you go through so much with a prem baby my daughter was in hospital for over 6 months but they tend to send them home even earlier now a days many go home on oxygen and breathing alarms !! I was shocked when a friend who also had a 26 weeker prem baby and came home at a very early age and on the prem baby support group i have noticed they go home earlier and earlier as soon as they hit a safe weight they get sent home its just the way it is 😁💕
First thing I thought after hearing Tracy's symptoms was it's Neurologic. It's amazing how much of our body is related to this system. Even the cough/tickle in her throat.
It took me 8 years to convince them to do a standing MRI for my ACM, and, additionally, 15 years for a standing pelvic exam for a stage four prolapse. It's completely insane.
My mother used to get terrible migraines periodically, and would have to lay in a darkened room for 2/3days. We had to stay quiet so that she could sleep. After many years of suffering from these, she eventually had a hysterectomy and they stopped.
Because the body prioritizes the brain when it comes to oxygen delivery. The heart (and other organs) will shut down before any lasting damage to the brain starts occuring.
I'm not even a doctor, haven't even worked in the medical field, but once I saw that video of Taylor as a baby I thought, "Maybe she's in such extreme pain her body is shutting down to prevent her from feeling it." And, lo and behold, I was right about the extreme pain. Honestly, sometimes I feel like doctors are so isolated in their own little professional bubble they lose all common sense.
The first case reminded me of Jean-Paul Marat, the French revolutionary, who spent most of his last years in a bathtub trying to alleviate skin pains. But his were associated with vesicles.
I really hate it when the doctor doesn't believe the PAIN a patient is going through.
@Joey Sal, there are some people who fake it and also this how to spell believe
@@zebruh2794 if some uses this to get pain killers or sickleaves, it doesn't make it an excuse to not beleive a patient. Especially with kids.. Kids don't fake it you can tell I've worked in health care and still for 9 years now. Never underestimate ur patient and always listen.
Can't blame you too much there, the impression I get is that, what if the family has to use daycare, or otherwise in public with the first story, being verry easy to be judged by others, esp when there is no retort to use.
@Joey Sal, I thought we were talking as if was an adult was in pain, not as if the kid was in pain, I understand your point but you should realize there are some kids who would fake it (I not say that she fake it) just so they don't do something.
@@zebruh2794 my comment is for the 1st story, the girl with pain being R/O as 'kids tantrum' if we have more doctors that don't assume pain is faked we wouldn't watch such series because all of them starts because more than one doctor assuming what he thinks not what a patient says. So ethically you can't say 'well you are faking it' it is not ethical at all to dismiss pain as 'faking it' I've had a 7 years old pediatric patient who did told her mom and pediatrician that her tummy aches, severe episodes of pain, 1st time the pediatrician said 'she's just spoiled, seeking attention' discharged them from the ER home, the very next early morning the family went to the ER, same thing, she's faking it. The mother insisted to do an echo abdo pelv she started shouting that the doctor doesn't even listen or beleive! The kid had intestinal occlusion that it needed surgical intervention. That's how dismissing pain is risky.
"Dont worry your daughter is not in pain"
Turns out her diagnosis is literally called paroxysmal EXTREME PAIN disorder
You watched it before you knew that
Even better, the response to her "throwing a fit" from the pain was to restrain her and hold her down, causing even more pain. It probably only stopped once all her endurance and neurotransmitters were exhausted, literally causing her to lose consciousnesses from pain.
So, basically, Taylor's doctors, when they didn't know what was happening to her and why, just dismissed her pain. I often wonder why doctors can't just admit they don't know. Ego gets in the way.
Sometimes they just do that to calm the parents down. You can't confirm something that you can't be sure of. Giving negative comments just make it much worse for the family.
With a baby so severely ill,all you have is hope. If the people you are hoping to help your baby are done..........what are you to do now????
Negative facts or positive lies...HMMMMMMMM
ANY doctor would have said the same. They are not trained in the spiritual or the natural. Only in toxic and deadly drugs and "treatments" to treat the diseases that THEY create! It's a major scam. I avoid doctors now. I was in the same boat as the people on this show. Turns out its spiritual blockages that cause these wide variety of symptoms and mimic or can manifest to physical illness. Diet is important. Vibration is important. Avoiding drugs is important. Etc.
@@cy4330 you're right, and docs didn't studied for years and get a license and lose it by false diagnosis. specialist are needed in this kind of cases.
A child literally screaming "it hurts" during episodes and they dont believe shes in pain...okay. how do these doctors pass medical school when half of them dont believe patients?? ugh
I completely understand how frustrating it is that they don't believe that someone is in pain. I have to deal with that when I am in pain. But then I also think about how many people faked pain to get pills. But if a young girls skin is red and she is screaming then obviously she is in pain.
They're dehumanized during medical school. It's not getting any better, either. We need to overtake our healthcare system, and demand change and put a stop to the greed and make healthcare a ministry. It should not, nor should it havve ever been an industry.
I’m a nursing student and we’re told to always trust our patient as pain is subjective and only the patient truly knows how they feel, but often the patient will say they’re pain is extremely high (due to them not really understanding the pain scale) and their vital signs don’t correspond with it.
When my son was a 3 month old baby he caught the staph blood infection Staphalococcus Scalded Skin Syndrome. This first 3 layers of his skin sloughed off over a third of his body and he was in hospital on IV antibiotics and morphine for 5 weeks. Every day for a week before diagnosis I took him to my gp who gave him oral antibiotics and told me I was being overwrought and a neurotic first time mum. My baby couldn't even wear nappies because of the pain and was screaming in pain and the gp told me my baby wasnt in pain. After a week I took him to A&E and they said it was the worst case of Scalded Skin Syndrome they'd seen. I no longer just accept what doctors say. I listen to my child and I listen to my gut. I take notice of EVERYTHING. My 3 month old could have died. Literally a third of his body was raw seeping wounds. Doctors need to start listening to parents, this is a lot of the reason why people die from preventable diseases like septicaemia, because doctors dont always take note of all the symptoms. Dont ever just accept what they say. Read and do research.
@@blondie7341 okay, you taught me smth new. thank you
I just searched her up to see how she's doing today and she passed away in January 2021. I couldn't exactly find her cause of death. She was apparently a missing person too, but was found safely in 2020. Rest in peace Taylor😔💜💐🌸
🥺
How did she die dose the mom and dad have anymore children and what do you mean she was a missing person
Oh wow I just looked that up as well :(
just watched this today and found out too 😔
May i ask were you find this? Or what happened that she died
Of?
That is,,,,I can't even imagine as a mother! ,,,THAT is a Strong mom!!!!
Don't use "," you're supposed to use "."
Yes
Definitely
Dats y I always and always respect women our mothers our sisters
@@theminecraftskillz832 let her figure it out...
Funny how a lot of these are solved by the parents googling the symptoms, whereas a lot of people are like ‘don’t trust Dr. Google 😂
Yeah, Google literally saved my life. I absolutely received an official diagnosis after I figured it out, but a vEDS, Marfan's and Arnold-Chiari diagnosis at the age of 26 shaved about 30 years off of my life expectancy.
@Iva Tiger what is that about
Its NOT needed
@Iva Tiger 🤫
Yes, and how come the doctors don't google it? Its like they are arrogent come to their own decision and won't question it as they can't possibly be wrong!!!
It's funny how doctors think they're just sooooo reliable 🙄
So the mother was the real doctor here
Paroxysmal extreme pain disorder has to be the most terrifying name for a condition I've ever heard
It's a step or two up from Peripheral Neuropathy - a disorder in which the insulating 'covering' of the nerves is attacked - no cure & little relief from the pain.
I have a great deal of empathy for the parents & their child.
MD's, need a different kind of education - one which heals folks rather than keeping them in a constant state of unwellness, just so the MD's, get a better salary or reputation ( my GP, in particular, & a hospital Speacilist are like that - the hospital speacilist, now listens to their clients, as I'm the only client they have who reacts badly to pharma drugs & they don't know how to help, as they've learnt the wrong type of medicine.
At least one Dr, is learning new tricks, as a result of one client who has beaten them at their own game - using common sense & alternative Materia Medica.
Namaste 🙏
well, they pierced her ears. Wouldn`t it be a trayma even for a normal kid, let alone a kid with THIS disorder?@@davidarundel6187
Watching the video footage of her as a baby having episodes in the hospital was one of the scariest things I've ever seen. My heart sank every time. I can't even begin to imagine what these parents went through.
Lacey Brown I cried every time because when my baby girl was three months she was air lifted and had turned blue it was horrible to see it over again every time they showed it my eyes just poured out. Scariest feeling and as a parent you just have to sit there you feel helpless because you can’t do anything to make it stop.
@@fizarrah
Oh my goodness. Is your daughter ok now? I totally understand what you mean. I'm a parent too. I know this isn't the same, but easily the scariest moment of my life was a time when I found my son on the brink of unconsciousness choking on a water bottle lid. I think that's the only time I've ever screamed in absolute terror. I thought he was dead. He was about 18 months old and I was in our laundry room while he was watching cartoons in the living room. And for no reason in particular I felt like I urgently needed to check on him. I'm so thankful that I did
Well she died on 28th Jan 2021...its very sad
If I was Taylor's mum I would return to all the doctors who said she wasn't in pain and show them her confirmed diagnosis.
Do not underestimate what a mother can do for her child. They are powerful and intelligent than a doctor, stronger than superman just to find out what her child was experiencing.
Taylors family are fantastic, especially her mum. Imagine bringing home a newborn and having to watch him/her every second of the day! She did a great job, and then she also managed to find out what her daughter has, she is truly inspirational.
Can you tell me what happened to her and what kind of episodes she is having? I couldn't understand.
@@sakshivijayvargia6588 unfortunately Taylor passed away in January of 2021, I was searched about it and I found her mom Facebook with very many posts saying how she missing of her daughter and of course pictures. Wasn't clear for me what's happened, all that I understood was she needed to go hospital and was victim of malpractice
What an amazing little girl I can’t imagine the pain that she has gone through and endured and how strong she is
I can & it wouldn't have been pleasant, as I have Peripheral Neuropathy - a fatal nerve condition where the myalan sheath, which acts like an insulator, breaks down permanently.
Namaste 🙏 💟
I always dont understand the blaming of the doctors in the comments of these episodes.
8 people around the world have this condition, I think it's understandable they didn't think of it. The mother searched for an answer every free minute, of course she was the one to find the solution.
Doctors are really just doing the best they can. I am in med school atm and already and I am getting scared reading the comments here. Diagnosing someone is a puzzle you have to solve, that sometimes takes time and sometimes you are wrong. We are just humans doing our best
i believe the issue is doctor not believing their patients when they don't know what the diagnosis is. So just because you've never seen a particular condition doesn't mean that the patient isn't being honest
I fully agree with you (i gave your comment a like) but in my experience, it is a fact that some doctors (and they are not rare) clearly don't do their best, and even simply don't do anything. I almost died twice because of them... I still trust doctors and the medical system but I've learned that patients must retain at all time their critical thinking and their ultimate sense of responsibility for their own health. But these qualities are not taught in any educational system...
Its not about not finding the answer, its about not looking for it.
The doctors and sloppy medical procedures in these stories are so lacking of quality, that i feel like, to make these stories smooth, they must surely leave some stuff out. Otherwise all these sories really are "Medical failures", and not "medical mysteries". I mean, can you imagine sending a baby with daily heart stops home with a CPR course for the mum only? That would be insane.
Its amazing to see such a strong mother...grandmother..dad and baby..
😭😭😭😭😭
Watching these series I’m so grateful for my GP. He always takes me serious and actually listens to me. Just because you don’t understand what’s going on, that doesn’t mean it’s not there or it’s all in the head
Livelifelaugh, I actually changed doctors four times until I finally found a practice with three angels. Strangely enough it was a Dr. I worked with. I was just so impressed with the way he listened to his patients and diagnosed them accurately I asked him if was accepting new patients, he says "for you, anything".
Respect to that family... They performed CPR more often than some first aiders on regular annually test I assume... And wow how that little body was tough enough to survive so many heart insufficencies/ attacks (not sure how you call it)
The human body is amazingly complex. Many diseases and disorders that are diagnosed have no explanation of cause
*no known explanation or cause.
@@phoebethegreat6253 thank you, O great grammar poluce
@@phoebethegreat6253 shut it that's not wrong why you comment people's comment let her be ⏰⏰
The cause is the devil 👿
@@squishyspud9636 why?
Man.....when she started talking about her issues with the dizziness & forgetfulness, I just about cried. I suffered a serious brain injury from a horse accident back in 2008 that I continue to still deal with some of the symptoms to this day that will never go away for the rest of my life. I know what that's like. I've had several MRIs with contrast & thank goodness for it. I feel for her in this way. I'm so glad that they were able to help her!
All those years spent training and learning to become a doctor yet they are so quick to dismiss a patient 😡 Maybe they should be educated in hearing!
Amen, well said!!! I had an 8 month in first year resident falsely accuse me of Munchasens by proxy when my daughter has been diagnosed with gastrointestinal problems! CPS removed my children over an arrogant doctor. I have such anger towards doctors!
They are trained in listening to patients, at least in the UK...and they still repeatedly ignore patients because their arrogance gets the better of them or they've 'been in this job 20+ years and have seen everything before' blah blah blah! Maybe they should be held more accountable, but they'd also be accused of putting people through unnecessary procedures. It's a fine line between the two, but from what I've seen/experienced they're a LONG way off accusations of doing too much.
Its practically impossible to learn every disease. We even know more about space and physics than our body. It is wrong to blame the doctors alone. It depends on the University/college/professor/study plan. They just cant teach you in med school about every disease that maybe 10 people had just like you cant possibly teach history about every person that has been alive at a certain time period. Many diseases are discovered just now. Many treatsment are discovered just now. There is a popular saying in med school that describes everything well: "if you hear hoove sounds, think of horses not of zebras". Because of this no doctor will diagnose you with lung cancer if you have a cough that is actually from the flu for example. Why teach something that happened maybe just a couple times instead of something that happens daily thousands of times.
@@nicki239 That's why listening to the patient matters so much. They know their own body better than anyone.
@@jessicataylor7174 the Problem often is with patients that eventhough they may describe all their symptoms or their pain that many doctors see this as read off a medical book and so may think they do it for the drugs. However, I believe that a doctor and the patient have to work hand in hand. If your doctor wont listen to you then get another one. My little sisterd pediatrician doesnt take my sister serious anymore since my mom would come often to him with her with neurological problems he may never heard of. And such he said it is all in her head. So I have seen this happening. One of the main problems in my opinion is the lack of exposure of such patients and thus lack of experience or the doctors ego.
So Taylor is 23 now. Wonder how she is doing now.
I came across her instagram account, she seems like a super happy and healthy young lady!
Cake - Sensei what's her username?
Nayha Noor I think just her full name, I don’t quite remember!
@@cakesensei9368 what's her full name? Just curious to see her...
Ray Schindler Taylor kielb it’s in description box
Watching this whole show should be a legal requirement to become a doctor.
Bruh what
@@Vanessa-im6tb The people in this show all suffered for way too long, or sustained trauma/injuries that could've been avoided because their disease is rare.
If all doctors watched this show just once, these symptoms would be in the back of their heads, and they might be able to diagnose way sooner.
It's like a couple of days watching, but in a whole medical career that's nothing, if it could prevent unnecessary suffering of even one patient, that's so worth while.
Honestly true 😂
Ok Dr. Google is not the same as going on a research on the internet!
Her Mother is her best Doctor Salute to the Mom
I think that Taylor's disorder is one of the worst that I've seen in Mys.Diagnosis. She had been suffering, literally, since the day she was born and the worst part is that there is no cure. I hope that she is doing better now. : l
Nature wanted to sort it out when she was an infant, modern medicine did not let her. Sometimes, we do not help people, we just prolong the suffering.
She is not doing better, she pased at 24 in January 2021.
@@andreabrava6899 what happened
@@andreabrava6899 Nature did not "want to sort it out". When someone is sick, you help them, especially when you don't know what's wrong. I understand she did not die from her condition either, so it doesn't fit the narrative at all.
tracey's husband seems like the best husband🥺🥺
How do you take that as a parent? Your daughter screaming in pain but the doctors are saying shes basically making it up? That must be heartbreaking
i have always grown up being told by doctors im 'making it up'. 1 being i had a bone that grew between my ankle and heel. Kept saying i was lying and was nothing wrong....the dr was trying to refuse to book me in for a mri scan that was requested by my dr that sent me there. that mri is the thing that showed the bone was there. but it took about 7-8 years maybe longer to get there. NOW i think the same is happening on my other foot and i at least have history and my gp on my side but still pritty much going thru all the same stuff again
@@Charlieto So sorry to hear that. Hope you're doing well now.
May I just say, one of my children couldn’t be held, not even to breastfeed. She was hot blooded and would overheat very quickly Doctors need to start listening to the mothers! A mum knows when something isn’t quite right.
@@LM-kd2zm Why do you say that?
@@LM-kd2zm 😂😂😂 I love when people spell words incorrectly while insulting other people's intelligence.
Yvette G what words did they spell incorrectly? they spelt everything right.
@@wolfzmusic9706 offence
@@wolfzmusic9706 I just looked it up though and apparently both ways of spelling offense are correct.
Persistent and compassion, I hope doctors have these to their patients.
Taylor: [literally has a condition with 'extreme pain' in its name]
Paediatricians: it might be hard to believe because you're merely her parents but she's not in any pain
Yeah I thought the same...
Thank you to the doctors that Listen, and Love to figure things out.. !!!!
Hi
hats off to her parents and all the people who tried to save her, she was such a strong girl
i can relate to these stories because i have a leg injury now for 3 years now, been to countless doctors and done numerous tests and scans but still no accurate diagnosis. i currently live with the pain and i pray i can find a solution soon
Try one of the alternative options like Naturopath, Iridologist, or Homeopath, Chinese Traditional Dr, Accupuncture, Aryuveic medicine ( Indian). You may find benifit from at least one of the professions mentioned.
Namaste 🙏 💟
Moral of the story, doctors play guessing games with our lives.
To save them you sometimes have to when there are no other options that you can think of.
Not saying that the actions taken, or rather not taken, by the doctors were right or wrong. But as a doctor or medical staff in general you sometimes are confronted with something neither you nor any book can explain with the symptoms you are dealing or not dealing with. There are cases where there simply isn't enough time to take 635976349 tests and review studied cases in a meeting room.
I don't want to seem disrespectful in any way so please don't take it like that, but what you say is partially correct. If you add a " in some cases" to it I'd hang it up my wall.
Because usually a doctor does know what she or he is talking about and has reasons to take said decisions, or not to.
Greets and I can understand your disappointment in the medical staff which surrounds her story, but please be aware that without doctors "playing the guessing game" saying we need to test this, this and that simply to see if any of those return positive an awfully amount of people would have been dead because the doctors simply said " nah we can't guess and test we need to know before doing anything". Tell me then, how can you know something without taking a guess in an unclear or never before seen situation.
The job of a doctor or any medical staff is based around "guessing", or better said, testing to categorize the symptoms.
@@maxmustermann7794 you are right sometimes doctors have to do this you can't just blame it tot them 😕😕
Google is better..
Headache? Rest in peace!
Dizzyness? Rest in peace!
Nauesia? Rest in peace!
Hotel? Trivago!
The doctors are trying to help u try to be the doctor are you just gonna leave the doctor to death
True Casual true mu brother died their just guessing the situation of life of my brother
That poor little tot having all that pain. So glad she is getting better. X
Yes, there's a dictum in American Medicine that says "when you hear hooves, think of horses, not of zebras". However, I went to Medical School in Spain, where my professor of Internal Medicine used to say "You'll never diagnose what you don't think about". We studied things we would probably never see. As a result I have a fair knowledge of Medical culture, but even then I acknowledge that there are hundreds, perhaps thousands, of diseases and conditions I've never heard about. For these I have two quotations from American doctors: "The best doctor in the World is the one who knows his/her limitations", and "the Medical library is the operating room of the Internist".
The doctors in Sweden don't see the zebras either. I was diagnosed with Ehlers-Danlos syndrome in 2013, I was born with it in 1967...I wish more doctors were thinking like you.
@@EleonorS I am glad you were finally diagnosed correctly. If you have Elehr-Danlos your doctor ehould be looking close at your aorta, because you have the risk of aortic aneurysm
@@faustofernandez2971 I know but my doctor wont refer me to examine it since I have EDS hyper mobility or type III and that's not the group with the highest risk. My current GP is not that interested and I think she's resentful that I was right about the EDS diagnose. It was much easier for her when she could dismiss my symptoms as being psychosomatic. I'm sorry about the negativity but as you might imagine I've met a lot of dismissive and even contemptuous doctors over the years. Thank you so much for the advice! /Eleonor
Horses-not-zebras isn't a bad thing to keep in mind, but it requires the addendum that zebras aren't unicorns and do, in fact, exist
You will be (or already are) a fantastic doctor who this world needs. I’m a nurse who reveres doctors, especially since working in ICU and ED. Sounds like you have awesome mentors too. That’s what it’s all about 🙏🏼
Such a lovely family! NEVER underestimate a parents knowledge and instincts about their child. I hope Taylor is doing fine today!
She died...😢
What an awesome mum! Bless her soul! 💖💖💖
Patient: (screams more than how someone normally should)
Doctor: She's fine and totally not hurting at all
Her mother is simply a hero...a real hero...
Tracey is amazing how she kept going through all that pain and sickness. A lot of people would have given up and taken their own life. The neuro surgeon did a fantastic job, I'd definitely be sending him a Christmas card every year if I were her!
This what mother's LOVE can do!
No any profession of any aspect can defeat or levelize in mothers love to solve any worst situation when it comes about their children.
How can the doctors say that she's not in pain? I cant even imagine how much pain that lil girl went thru
What a great show, very interesting, thanks for posting. It was a sad day when they took this off the air, along with "I survived."
Thanks, Reel Truth! This documentary series details both strange and familiar conditions in ways that keep you wondering up until they’re revealed, which is quite cool. Keep posting more episodes from this series if you can!
Excuse me..... she made appointments with Multiple doctors and NONE found Diagnosis and just send her off? wow. 5 years without diagnose, before age found a decent doctor who could help her?? Omfg.
I am so glad I live in Europe....
Hats off to you mom
Right,,, she'd strong
She is such a BEAUTIFUL woman!!!
I can't believe nobody connected the mom's syptoms to a brain tumor... I'm a third year medical student and i thought about it..
maybe its so obvious that it is easy to miss? or people think they have that all the time so doctors don't really think about this anymore?
@@steffismile14 Hey! No, the most obvious and dangerous things have to be ruled out first, then you look for milder or atypical diagnoses
Right? My sister had the same thing. Lucky she got tobit before the really bad symptoms and got it removed
I'm an architect and I thought it was a tumor😕🙄
Im no one but i also thought about it
Someone brings a corpse to a wrong room.
An American doctor takes the pulse: "It's just stress. You should rest for a few days."
😂🤣
🤣🤣
@@lindagariba8790 lolll
Lol Indian doctors will admit him directly in the ICU or ICCU, and keep treating him (imaginary treatment ofcourse🙄😬) then give a huge bill to the patient's kin and if they are unable to pay they won't give the dead body😒
“Typically we don’t look for the Zebra in a field of horses…… but if the patient is persistent and the doctor is persistent, eventually we do find the zebras.” This resonated so hard with me, because after over 20 years of symptoms, I eventually found a doctor who wasn’t giving up until that zebra was found. That doctor changed my life - gave me my life back. They are out there.
Nobody can be your advocate as well as you can be for yourself. If you know something is wrong, DON’T give up! Persist and find that doctor who believes in you and will go on that Zebra hunt with you.
Taylor Kielb died this January at the age of 24. RIP
Oh what a terrible terrible shame after all she went through. I wonder what has happened to her baby ?
My condolences to the family...what happens to her ??
Only a mother can understand her babies pain... She can alone fight for the child
Watching on march 2020. Mother will always be a mother 🙏🏽🤍
wOw.. The spirit of her mother,, i like her
They way that these doctors don't believe patients pains and concerns is just..... terrible. Awful doctors
Imagine have rare disease without diagnosis over 10 years... I'm shocked. Every rare diseases are horrifying..
i need a diagnosis... im soo addicted to these shows 🙈
This is why I never gave up on my conditions...
Amazing stories! I really relate to Tracey's story. Back in 2009 I developed a migraine that I had to live with every single day of my life. I went to ER so many times to get help, and I was eventually referred to a neurologist. I was eventually diagnosed with chronic daily headache syndrome and was tried on so many different medications (including Botox!) to help reduce the pain. Nothing worked, so I eventually gave up all medications and I just try to live my life. Fortunately, a lot of the symptoms have settled down a little since I was diagnosed with kidney cancer and had treatment.
Sandra Chapman
There's a diagnosis called *chronic daily headache syndrome* ? 😧
1:34, that is an ultrasound of a kidney, not a baby. :/
😂😂😂😂
There is nothing at that time stamp
What a remarkable kid, Taylor♥️
I can’t believe they sent the family home! Knowing this baby was stopping breathing! Crazy! I’m glad that last doctor didn’t dismiss them and tried to help! :)
They sent my daughter home on oxygen and a breathing alarm as she stopped breathing on a daily basis and several times a day she was a 26 weeker prem baby and came home at just under 7 months. This is quite normal your trained in cpr etc its just part of the life of having a child thats premature and they do grow out of it eventually 😁
Annie D oh I see. Iv never known it that was all. Seems a bit harsh on the parents! I mean I’m glad things are ok now though :)
@@lost619 it is very scary but you do get used to it you go through so much with a prem baby my daughter was in hospital for over 6 months but they tend to send them home even earlier now a days many go home on oxygen and breathing alarms !! I was shocked when a friend who also had a 26 weeker prem baby and came home at a very early age and on the prem baby support group i have noticed they go home earlier and earlier as soon as they hit a safe weight they get sent home its just the way it is 😁💕
Im amazed at the mother, she had to do a *"doctors"* job in searching for her daughter disease.....
Disease*
@@charis640 thank you for the correction! My bad 😣
@@athirahtulazmir no problem. 😊
I'm in this rn, my mom found what i have and no doctor believes us, thinks i am imagining.
Respect to every mother out there
🙏🙏🙏
First thing I thought after hearing Tracy's symptoms was it's Neurologic. It's amazing how much of our body is related to this system. Even the cough/tickle in her throat.
What a strong family. ♥️
The mother found the issue through googling? Fantastic. I never et heard of sodium channels before . Interesting.
Who run the world....
GIRLS
You have never heard of... sodium channels? Have you never had biology classes?
@@l.hendriks93 all I remember is dissecting a worm and rabbits eyes and that was me out!
@@Marie.b haha I had to dissect a clam and a cow's heart and stomach
@@l.hendriks93 urggghhhh . What's wrong with just reading anyway.
Wait. It took 5 years to get an mri done?? She said she was constantly getting tested
No she had one in the beggining.. but nothing came up
It took me 8 years to convince them to do a standing MRI for my ACM, and, additionally, 15 years for a standing pelvic exam for a stage four prolapse. It's completely insane.
All I can think of after watching few episodes is the extremely expensive hospital bills
What a parents family and above all, what a wow girl
Incredible mother!
A very sad start to life but what a little fighter she proved to be, so glad to see that she’s now living her best life, much happiness to you all💓
she died january 202😢😢😢
She wouldn't be screaming if she wasn't feeling pain...what's wrong with those doctors tell the mother her daughter wasn't feeling pain
Thank you MD!! I am almost out of breath when you uploaded 😍😍😍😍
Danisa Waje same lol
Some doctors really can accept the fact they are just humans that can't actually help or heal everyone.
Happy to hear they are ok 💗 Alhamdullilah 💗MashaAllah 💗 very beauitful strong People may Allah bless you Ameen 💗
Aww googled her name. Sad she is now dead..died this year, 2021. May she rest in peace. Bless her soul.
Who? First or second??
@@DatBoi_TheGudBIAS First story
What happend
She was poisoned by a so called friend how sick
Thank you so much for uploading this series, it is so hard to find online! I can't wait for you to upload more!
My mother used to get terrible migraines periodically, and would have to lay in a darkened room for 2/3days. We had to stay quiet so that she could sleep. After many years of suffering from these, she eventually had a hysterectomy and they stopped.
How bizarre for that to be related. How was it the case? I'm glad your mum feels well since having the hysterectomy
Never underestimate a "Mother"♥️🙏🙌💯👌
Ten years doctors try to find the solution and mum comes across googling. Wow. I'm impressed.
The background noises and music are super annoying and distract from the storylines!
Yeah, they're dramatic and sometimes really scary
So annoying. Wanted to state this but was too annoyed to bother
That's America for you
Great work doctor mom you are a wonder mom blessing.
just the name of the disorder is scary, I can't imagine what it feels like to have it...
How did she not suffer brain damage from all that oxygen deprivation?
My thoughts too
Because the body prioritizes the brain when it comes to oxygen delivery. The heart (and other organs) will shut down before any lasting damage to the brain starts occuring.
Jesus did it
Doctor’s need to have refreshers. What they may have learned from the past may not be sufficient enough to eveloving diseases and all.
supposedly that's what medical conventions are for, but most of them just treat them as vacations..
I HAVE THIS TOOOOOOOOOOO .... i cried watching this because for the first time in my life i am hearing that someone else has this disease
Watching these episodes makes me think most doctors are incompetent. Why do they take so long to order MRI's with contrast?
Crimson TideGal Because pencil pushing buffoons behind a desk at an insurance company have too much power over what a doctor can do
snickerbuckle -exactly, well said
Hospital administrators and health insurance.
They actually don't research well.
its all about a money
Well done these doctors r trying and the parents r keeping strong!
Amazing... What new sicknesses to fight with.
Totally original comment about close-up shots of slowly blinking people.
This ^^
Taylor passed on earlier this year (January 26th 2021).
May she rest in eternal peace.
I'm not even a doctor, haven't even worked in the medical field, but once I saw that video of Taylor as a baby I thought, "Maybe she's in such extreme pain her body is shutting down to prevent her from feeling it." And, lo and behold, I was right about the extreme pain. Honestly, sometimes I feel like doctors are so isolated in their own little professional bubble they lose all common sense.
Why the intermittent 15-second black screen episodes? They are most annoying
@Southern Truth Chick I'll complain all I want, Go take a long walk on a short pier
It's a rare condition called intermittent optic-neural destimulation ;)
@@MononymousM lol...love that!
Fast forward it like everyone else
@@faustofernandez2971 bruv
10 years she almost became a scientist or a researcher 😁. More efficient than doctors
So glad Tracy is well. Must have been a living nightmare. X
why on earth did they wait till she was 18mths to give the baby a pacemaker? the drs acted like they did not care if she died.
This is America. Not all Americans are allowed health care.
Mother's Love😊
The first case reminded me of Jean-Paul Marat, the French revolutionary, who spent most of his last years in a bathtub trying to alleviate skin pains. But his were associated with vesicles.