RU-vid has added KC's charity and the Fundraiser tag is on this video! Thank you so much for any contribution, and for watching this video! I also added Spanish, Portuguese, and Japanese dubs and subs, Chinese subs, and 8k on here 😁
as a currently young woman who had to fight for years for my conditions to be recognised, this is sadly so true. especially when you have a history of poor mental health like me. one example was i have ptsd and a gastroenterologist said i was constipated because “how can i expect to let go of things down there if i don’t let go of things in my head?” nope. i have a partially paralysed GI tract and it would take at least 7 days for me to digest my food without my medication, even now it’s still a few days. LISTEN TO PEOPLE WHEN THEY SAY SOMETHING IS WRONG!
It's so annoying how they bounced her around. None of the doctors could agree on any one consensus. It would only have taken ONE of them to have caught this, but none of them did. They just kept telling her "it's fine" or "this person will handle it."
well no, when my dad was in his late 30s he kept having stress related pain all over his body and the doctors just kept telling him to work on his core but like a year after it started they found bones floating around in his blood, from when he broke his foot.
Ohhhh man, seeing the actual patient at the end fully recovered was a relief; and now she advocates for those with these variety of diseases with her foundation. What an amazing person, and what an awesome lesson this video was. This is probably one of those rare youtube collabs that brings positive, wholesome awareness and education. Thank you to both for collaborating into making this extremely informative video!
I complained for years about horrible pain and cycles. By the time someone listened I had 5 tumors the size of softballs and had to have a complete hysterectomy. Women are ignored and told they have anxiety or you are a pain med seeker. Truly sad. Thank God mine were benign.
Become a doctor and change the narrative, please. Certain populations are commonly marginalized, including women, minorities, children, elderly, etc. With that said, you have a better chance of hitting the lottery than having her condition. The odds of anyone seeing this similar presentation in practice is so low, it's ridiculous. There were flags that may have warranted other clinical decisions. However, that's with the benefit of hindsight and this well-stated presentation. Talking to patients and getting an accurate history within the timing of a short patient encounter isn't always likely to give you the needed information for the diagnosis. Further, she was referred to multiple specialists throughout that time, so I don't think saying she was ignored is accurate.
@@cameronno6039 it's always easy to play armchair quarterback years later. Not to mention we have to diagnose this extremely rare presentation in a 10 minute visit
All of her case sounded like an absolute nightmare to go through, it was VERY relieving to hear at the end that she survived and made a full recovery. ❤
I agree, not a good time, 0/10 recommend. I'm very grateful to be in the regained "full" function club now though. Thank you for the support. - KC (Katie Coleman)
My twin couldn't keep food down for over a year, and got under 100 lbs. Everyone said it was psychosomatic until a 4th year resident found her diagnosis: gastroparesis. It's life long, she still struggles to digest, but she is alive and well. All thanks to finally finding a doctor that refused to associate her prolonged and severe symptoms as psychological.
Is she on Domperidone? You can't get it in the US, but you can get it from Canada or the UK. I get mine from a pharmacy in Florida that gets it from other countries. It's the only thing that has treated my Gastroparesis with some success.
@@aspirecan4829 she is on at least three medications, and the only two I am sure of are Omeprazole and Ondansetron. I'll definitely ask her. Anything helps
@@aspirecan4829 I live in Florida, my 21 year old son has seen 17 doctors, and is just taking meds to get from day to day. He can't work or go back to school. I will go anywhere in Florida to help my son. He's had the two above. He's taking sucralfate and two more, but what is it. It's making him anxious, not the other way around.
@aspirecan4829 I have gastricparisis and Dr has tried every medication out there, at no avail. How can I get my hands on this dop... med? Any suggestions?
Same thing happened to me.... no one believed i had cancer because I was only 17. After 5 years of being prescribed iron supplements and psychologists, doctor #9 found the cancer which was quite advanced by that time. At 22 I started two years of treatment and lost my ability to have children. I was told that if the first doctor had properly diagnosed me it could have been cured in 15 minutes.
Curious how was it a problem on your iron? I have iron levels that refuse to rise as well :( In any case really glad you were diagnosed... Sorry to hear though
@@nutrinogirl456 well.... I had my period for 2 years straight. I needed iron because of the loss of blood. You'd think that would be a clue that something was wrong but.... no.
That makes me mad! Doctors all act like young people can’t have serious problems. It took over 10 years for me to get doctors to believe how much pain I’m in and to get all these diagnostic tests done to prove I’m in so much pain that I have many things wrong and permanent disability. I was seen as a hypochondriac by friends and others. When I get these test results and doctors saying I can’t work and then approve me for disability it was like vindication because I could finally say see I told you I’m very sick and not faking or making it up.
When I had just turned 12, I started to go downhill. I was constantly sick and covered in bruises and basically bleeding all the time. I was really sick, constantly suffering from tonsillitis, colds, really pale, exhausted all the time, unable to eat. My mum and dad made fun of me for saying I was ill, so I didn’t take any time off. I was still cycling to school and going to my swim club. One day at school I felt very hot, and couldn’t stand and had to keep sitting down in woodwork class. I felt lightheaded and started retching, so I got sent to the nurses office and sent home.. the next day I was back. My mum would yell at me for not riding my bike, for needing to sit down and rest every 30 seconds of walking, for not eating enough, for being lazy. Then my aunt died of pneumonia and I had chest pains, so I went to the doctors. He told me I was being over dramatic and wanted time off school. After 2 and a half months of my rapid decline, school called my parents and told them to take me to the doctors. I was told I was probably slightly anemic and needed iron supplements, and to monitor me to make sure I didn’t have anorexia or an eating disorder, and that beyond that I was fine We brought some, I tried them- then the next day my mum saw a lump on my neck. I went to a different doctor and she told me i probably had cancer and needed bloods done. We were gonna do that the next day. Well the doctor called the hospital that night and we were up the hospital that evening. I did have cancer; leukaemia. Having my own parents yell at me and make fun of me whilst I was rapidly declining and feeling like I was being over dramatic with how sick I was…. Fucking sucked. Having the first two doctors dismiss how I’ll I was and physically looked…. Fucking sucked.
It's a sad fact that having parents who don't listen to, and emotionally invalidate, neglect, or abuse you, makes a child learn to both doubt themselves and have anxiety/overreacting tendencies. You learn from such awful people that you either need to make a big deal out of things to get any notice taken, or to not bother because it will only fall on deaf ears, and maybe they are right and whatever is bothering you really isn't important. I'm so sorry you had to go through this, and I hope you are doing better now / get better.
Hope they learned to treat a soul after that Physical problems alone can be hell but i just don't want to imagine Combined with psychological pressure too
stomach pain for women is always diagnosed as "just a period". I bled for over a month straight once and was having such bad abdominal pain I'd be toppled over on the floor, writhing in pain. The hospital said it was just my period flowing extra heavy and to come back if I'd soaked an overnight pad in an hour. I told them that had already BEEN happening. They told me there was nothing they could do and sent me home. They wouldn't even write a note for me to miss work so I also lost my job.
"Anxiety", is a blanket diagnosis for "I don't feel like doing my job right now; That will be this many $$$'s..." Even worse, they wont even perscribe Zanax to calm you down enough to figure out what's actually wrong on your own..."Go to med school for 4 years, then, you come back and tell us what was actually wrong...We will argue with your findings, and diagnose "anxiety", anyway..."
That is extra bs, because they CAN provide treatment for excessive menstrual bleeding. I've been dealing with a similar thing, and after bleeding for a month straight and having to change my overnight pads and tampons every 2 hours I was starting to feel dizzy and out of it. I went to urgent care and they prescribed a medication that encourages clotting in the blood. It didnt stop it completely as expected but it at least reduced it to a reasonable flow, and stopped 2 weeks later. The medical system is such a joke tbh
My mother passed away in 2019 from metastatic breast/lung cancer, and the one thing she constantly stressed to me was how excruciating it was for her to explain symptoms and changes in her condition to different care providers, only to be met with dismissal. She was a lecturer in Communications at USF Tampa during the last 6 years of her life, and ended up shifting her thesis focus towards, specifically, the nature of PATIENT and CARE PROVIDER communications. There's no question that her work had an impact... a few days before she passed away, she received her PhD diploma and i was absolutely blown away by the number of people that came out to celebrate her work and her life.
My condolences..She's a diligent, brilliant, and considerate woman. Her work resonates with me and many others. The modern dream since the 90s is a commodity of Healthcare that has comradery and consistency. We can get there soon.
This story is exactly what happened to my mum, except she was older than 29! My mum died 10 days after finally getting a diagnosis, where we were told the symptoms were because the cancer had spread to the brain, yet she was dismissed time and time again. One dr even told her to stop wasting their time and not to come back unless she had broken a bone. By that time she was in insidious amount of pain, continously vomiting and barely conscious, but still they told her it was anxiety about an upcoming kidney transplant she was due to get.
@sangaperezgimenez6717 I agree and I wanted to pursue it, but the rest of my family didn't. They told her it was her kidneys although her kidney function was improving
Can totally relate. Told the neurologist I was afraid I was going to end up in a wheelchair because my legs would randomly stop functioning as 27 year old female. He told me that it wasn't his concern. I fought with the hospital to get a new neurologist for 6 months. The new neurologist told me that I probably had a hidden trauma and put me on anti anxiety medication. Newsflash they didn't work!! But I did get an MRI which showed disc bulging and spinal tumor.
Lazy apathetic doctors who refuse to do their job make my blood boil. They have no business being around any patients. I’m really sorry you went through that, I hope you’re doing better now.
I hope you had a great recovery; it must have been hard. Same exact thing happened to me. I was told by doctors that I was anxious and that I just didn’t want to exercise - essentially calling me lazy. My mom made me advocate for myself and I ended up diagnosed with stage III astrocytoma. It was a grueling treatment plan and I had multiple reoccurrences, but I’m so glad to still be here and living my best life. I’m a paraplegic, but I’ve never let it stop me from enjoying life. I think doctors, even female ones, are way too quick to dismiss every complaint as period related or psychosomatic, and I’m not sure why.
I’m very sorry that happened to you; I’ve had something similar happen to me, and I’m going to go ahead and say what needs to be said: This happens because we don’t demand excellence from our universities and medical schools anymore. Idiots who would have been weeded out in the past are now making it to graduation and beyond, and they’re the ones who don’t know what to investigate, so they tell you that it’s all in your head, or they refer you to a colleague to get you off their plate.
I would have thought that legs randomly ceasing to function would immediatly flag up a nerve compression issue. I have a disc bulge / hernia and I work hard to manage numbness in my right leg. The first thing the NHS doctors suspected was a herniated disc, which was confirmed by MRI imaging. As for your spinal tumor, did you get that treated and how are you?
@@taticatnineland You nailed it! That is exactly what they are doing when they feel they are incompetent. Most of them have zero compassion, cannot comprehend the symptoms or their severity, and no logical skills to investigate when faced with something that doesn't fit in their top 10 patterns. Most are not even up to date in their own specialty. Dr House doesn't exist in reality. No wonder so many patients realize they are on their own and have to use Google to diagnose. I really hope they start using AI for medical diagnosis - it may potentially be much better than most doctors nowadays.
Something similar happened to me in 2021. I had an extremely severe prolonged migraine - by far the worst pain i've ever felt. I felt like my head was gonna explode, so I went into a walk-in clinic. The doctor quite literally ridiculed me for bothering to come in for "a little headache" and basically told be that I was just being dramatic - when I started to cry he told me "not to get hysterical". I went home in (angry) tears and about 6 hours later, I had my first ever seizure - a grand mal. The subsequent MRI revealed I also have 3 lesions of severe demyelination in the white matter of my left prefrontal cortex - but I have no idea what this means for me because surprise surprise - the neurologist I saw that diagnosed this was also an unhelpful asshole. How sad and unsurprising it is that these comments are flooded with comments exactly like mine - young woman with stories of being completely neglected by medical professionals.
take your turmeric and black pepper. turmeric is one of the few herbs that can bypass the blood to brain barrier. it will keep you healthy. the black pepper increases bioavailbility by 2000 percent for the turmeric. ive been thru tons of shit as well. turmeric is a wonderful herb if you know how to use it
That doctor was an idiot. What you had was what they call a thunderclap headache, and it is a sign of a medical emergency. Especially the feeling like your head could explode part.
My sister is 29 and a colorectal cancer patient. She went to CPAP for mental health related concerns and ended up learning she had cancer - it’s been 9 months and to this day we express gratitude about her ER providers admitting her and keeping her hospitalized until they confirmed it was cancer. I cannot cannot cannot fathom how she, and I as her caretaker would have navigated this during the pandemic. My sister needed so many blood transfusions and is still needing to visit medical facilities everyday. My heart breaks to know Casey went so long with her discomfort. Thank you for sharing this and advocating about this plight
When you’re female, medical gaslighting is the norm. So infuriating. As an RN with 45 yrs of experience, I still find it necessary to all but diagnose myself, request specific tests & demand my own specialist referrals. It it why I’m still alive. Never expect doctors to have the answers. They’re just the gate you have to get through until you find the right diagnoses. (Sad)
It's absolutely 1000% correct that you have to be your own best advocate. What an incredible survivor she is, her bravery and willingness to fight to live, and survive such a rare cancer is so inspirational. Good for her, so happy there was a good ending to this one and to actually see the patient at the end was very uplifting. Thank you for bringing us this story.
I couldn't agree more - advocating for yourself is crucial. It can be feel unnatural and uncomfortable at times but is so important. Also, thank you for your kind words in this comment. It really means a lot to me - KC (Katie Coleman)
@katiekickscancer_kidney Oh, I am so happy you are ok!! So often in these videos the story is told after the person has passed away. But I am so happy that the end of this is happy and you are doing well!! Such a great start to my day. And thank you for encouraging people to advocate for themselves. It's so very important and yet so hard to do!
Good thing we're not raising a generation of kids to believe that it's their fundamental right to be happy and healthy, and not responsible for their actions, despite the hardships that come with life. That would be horrible.
Medical student here. My heart goes out to KC. These kind of stories have further motivated and encouraged me to listen actively to all my patients and ensure to carry out all thorough investigations so these types of cases will not happen! No matter if you are a woman or a man, I will treat you with compassion and quality medicine.
Yes! Please do better than these corrrupt physicans telling people they have "anxiety" but actually have myocarditis or perimyocarditis a side effect from the jab
I hope you have a wonderful career! It's great that you'll listen to patients and not dismiss their concerns no matter how many years of experience you'll have under your belt in the future. These ultra rare cases where you'll most likely be the only one that investigates, will probably be the main factor that saves a person's life :')
I know we cannot expect doctors to know everything immediately or all the right courses of action, but it really is scary how often some of them will get things terribly wrong or dismiss a patient's concerns as "anxiety." Also, props to the absolute legends who donated blood for her surgery.
One thing you need to always check is your blood type. Always find out how rare it is. Turned out I have the second rarest blood in the world. Only 2% of the population in the world has it. So while I struggled through leukemia without the use of chemo because the insurance company knew they would kill me if they gave chemotherapy as no one with my blood type organic combination had survived using chemo. This was a blessing in disguise as it's saved my life long enough to find a way around the problem. When you have B- blood type & mixed DNA, no chemo nor transfusions which is common to help you feel better and strengthen your blood. Nobody with this blood type can donate or should donate any blood unless it's for their own need or family member. You can't receive blood from a universal donor. When nurses are telling you so sorry your bone marrow transplant failed but you haven't had one yet you know you're in trouble but your oncologist has been so chipper. He hasn't talked about giving you a blood transfusion when other people you know have had them you begin to wonder what's the problem here? But no one has told you anything about your blood type or the problem with your DNA. Then just by a fluke you end up getting a new OBGYN at your HMO. Yearly pap needs to be done. At the appointment you meet this very elderly man and he said by the look on your face that you're not going to be very happy him doing the smear and he says oh no my nurses do all of that. I'm here to see if I can help you let's see, hmmm ah yes I'm pretty sure and also your blood work over the last few years that you just have a very severe sensitivity to a lot of the food you're eating. Due to the fact that you're eating food that does not relate to your DNA you're having a problem with your weight you've been struggling to get it down no matter what you do. I can tell the last 15 years and I want you to know that you shouldn't feel guilty some of these doctors are completely off the mark. Well I took advantage of your blood draws and had your DNA run in a very deep dive. I mean the kind we do when we are doing DNA research on cadavers, ancient DNA etc. It gives a little better explanation then you know your commercial DNA would. I hope you don't mind but I'm a DNA specialist I worked for the CDC studying obesity for over 30 years and this is what I can tell you. At that point I was all ears and anxiety was gone. This was the first person in my life since age 10 who treated me like I was a human being and not some person who couldn't control their eating habits. I was adopted in my 5 ft 99 pound adopted mother treated me like I was some horrible monster. Because I had developed fully by age 11. I looked like Marilyn Monroe. The bombshell not the innocent redhead and I did not try to look like I was born pretty and it just continue to grow into a very young adulthood. My parents had me raising my brother and sister by age 13 as well as fully responsible for the house and all the cares that come with basically being the hired housekeeper, nanny, nurse to an elderly person, nurse to a psychotic and sick adult, helper to the adult male who worked 6 days minimum a week as well as presenting a positive and socialites standing in the society that we were raised in upper middle class organizations and of course the school district. Before laws were passed even though the school knew that I was being extremely abused and so was my brother who was adopted with me at the same time we could not be removed from the home because our adoptive parents money bought their protection. Even when my PE teacher in 8th grade tried to shame the poor School principal in front of other students in the hallway of the school into having me removed for the damage to my back from a bOne thing you need to always check is your blood type. Always find out how rare it is. Turned out I have the second rarest blood in the world. Only 2% of the population in the world has it. So while I struggled through leukemia without the use of chemo because the insurance company knew they would kill me if they gave chemotherapy as no one with my blood type organic combination had survived using chemo. This was a blessing in disguise as it's saved my life long enough to find a way around the problem. When you have B- blood type & mixed DNA, no chemo nor transfusions which is common to help you feel better and strengthen your blood. Nobody with this blood type can donate or should donate any blood unless it's for their own need or family member. You can't receive blood from a universal donor. When nurses are telling you so sorry your bone marrow transplant failed but you haven't had one yet you know you're in trouble but your oncologist has been so chipper. He hasn't talked about giving you a blood transfusion when other people you know have had them you begin to wonder what's the problem here? But no one has told you anything about your blood type or the problem with your DNA. It was a specialist in DNA research who saved my life . I went into remission without any chemotherapy and have been cancer-free since 2010.
They let her cancer become more advanced when a simple ultrasound would given them all the information they needed. Doctors love to dismiss patients with crackpot psychological diagnoses. Someone has high blood and a racing heart for a month? Suddenly her doctor is playing psychologist. But a real psychologist would have sent her to the ER.
that's why public healthcare is such an important thing in most countries with public healthcare doctors are encouraged to do tests which the patient wont have to pay for but the goverment will of course there are still doctors that refuse to do tests just because they dont like doing paperwork but they're much rarer than the ones that just want money in the US where patients are completely responsible for paying doctors are discouraged from doing tests since there's a decent chance the patient wont be able to afford them anyways (this is worsened by how overinflated medical prices are in the US)
The fact that the medical system is set up this way is such a crime. You basically have to teach yourself medicine to protect yourself from the "experts".
That's why you should protect yourself and be safe.. eat only healthy food Idiots think they can live anyhow and when they're sick some magicians will totally eradicate the result of their bad lifestyle
Which is the big main reason so few people trusted medical professionals during the pandemic. Far too many died because they learned from first hand experience how untrustworthy doctors are allowed to be.
As someone with a rare lung disease that wasn't diagnosed until age 13, I appreciate the doctors who take patients seriously and help diagnose and treat those rare diseases. Because sometimes it really is a zebra. I'm very glad that she was able to get diagnosed in time to be treated and is now doing well.
I posted a comment earlier about something like this. Im getting investigated for epilepsy, but for the longest time they just thought it was anxiety, or a migraine disorder. I definitely understand the ruling out of other issues, and for me my memory issues related to my disorder complicated treatment. But other times the healthcare system complicates things. Especially as you go between doctors. Or if you only see one kind of specialist, or something like a Physicians Assistant, or Nurse to treat conditions, or go through treatment as I did.
@@I_like_big_bombs Yes, I agree. The symptoms of my disease are present in many others, and most non specialists have never heard of it. So I understand why it's hard to get a diagnosis. They thought I had 'atypical asthma' for years, even though my peak flow readings were always fine and the asthma inhalers didn't seem to do anything. At the same time, there were many times when I was not taken seriously. I went to the ER as a kid with a partial lung collapse, for example, but the doctors there accused me of faking it (they asked me at age 9 if I had a bad day at school). If the treatment isn't helping and the symptoms continue for long enough a good doctor would take the patient seriously and investigate other diagnoses. Even if the patient is a child.
@@desertrose0027 I had the same thing. My pediatrician at 14 or 15 said I was probably going through normal issues when I got extremely sick, or when I exhibited symptoms of extreme migraines, tiredness, and visual, olfactory, and auditory hallucinations. His dismissals seem silly now that I know I have memory loss after a seizure (with entire days being lost). Usually starting with paranoia, hallucinations (visual, olfactory, and auditory), deja-vu, loss of spatial awareness, then hit with staring spells, loss of speech, poor writing and spelling, then after a minute it becomes confusion, disorganized thoughts, dizziness, and tiredness. Symptoms initially dismissed as anxiety.
@@I_like_big_bombs I'm so sorry. I'm sure that was very scary (and frustrating) for you. I'm glad that it now seems you're on a path to getting some answers, which is good.
I will never be able to fully express or repay my gratitude for all of the incredible strangers who stepped up for me with that blood drive. It brings tears to my eyes every time - KC (Katie Coleman)
@@katiekickscancer_kidney Hello Katie I am so glad you are doing fine 😁but i don't understand from the video did you make a full recovery? Are you taking any precaution measures still?
@@ReverseGuy I still have a stage iv cancer diagnosis in my chart (that doesn't go away) but my last set of scans came back as no evidence of disease. We still watch me closely to keep an eye out for anything but I live a very full life now and live a better quality if live than I did before my diagnosis. Even after the surgery. I feel very lucky. I share on my channel as well as on other social platforms for more info too
It's insane to me that doctors would dismiss a 165 bpm heart rate and chronic hypertension like that. Even on their own, those two symptoms are dangerous
And as the doctor said, the heart reacts to something being wrong by pumping harder and faster. While I was ill, they put me on heart medicine - which I'd never needed. When I began to get better, my BP went low enough to cause dizzy spells, once in front of a nurse. I removed myself from the heart pills and informed the doctor, who advised AGAINST it! I decided that one is clueless and fired her.
This is such a scary story. It genuinely gives me chills. I'm glad she was able to make a recovery and is now able to talk about her experience and found something in wake of her experience.
My wife has struggled with that kind of pre-period pain but in her case it was polycystic ovary syndrome, but still, I was so on edge with this case, I'd never had a case from Chubby Emu hit so close to home and in a case where you can't just say "oh yeah the patient is being an idiot", but in one of the few where the patient is being perfectly reasonable and doing the right things.
As someone who has been dismissed from doctors for decades only to find I have a chronic illness, I am so happy Katie got heard she even more glad she's better. ❤
Thank you so much. The time I spent lost in the system, definitely made me feel for the chronic illness community. The first wave of emotion I was hit with when they told me in the ER was relief, because I felt like we finally had answers and someone believed me. The tears definitely came afterwards but there was a sense of relief in knowing we could put a name to it. I know many chronic illness patients end up in that cycle much longer than I was. I'm sorry that happened to you as well. - KC (Katie Coleman)
@@katiekickscancer_kidneyYes... the unknown is hard... if you don"/ know what it is, medically it is there is nothing you can do to get better, and it often leads to you not being believed, even questioning yourself. It all becomes so hard, the suffering goes on, often getting worse, and for some unfortunate person leads to long term morbidity, poverty, even death. Putting a name to a problem is validating, it usually means you are taken seriously. Having an explanation, sometimes even when the news is really bad can give back some control, and a treatment plan. If there is no treatment it at least helps you work out realistic goals and lifestyle changes. Being chronically ill, feeling like foctors aren't treating you seriously, continuing to decline, losing function can lead to depression kind of hopelessness, a lack of confidence, maybe even questioning your sanity... seeing yourself as the problem. At other times the frustration of how hard living becomes, and being dismissed leads to frustration, rage and disenchantment. What is even worse is when it turns out to be a relatively common life threatening problem, that is dismissed without treatment because of bias of medical staff, even "not looking sick enough" I am autistic, often when I have a medical problem I don't present typically. Maybe I have a low pain threshold (I don't think so), but because I deal with moderate to severe pain everyday, I have a high pain tolerance. When I am asked to rate my pain... my seven eight and nine seems to be more than most (kidneystones, perforated bowel, surgery I ranked at about 7 1/2). My 10 was a unexplained searing pulsating headache the felt like it sent electric shocks down my spine... I was in hospital being treated for cancer. Thankfully it only lasted about 30 minutes. Maybe because I m autistic my appearance and body language may not typical. I can have problems expressing myself especially when I am really sick. I had bad headache, and gut pain and was given IV antibiotics in ER and sent home. A few days later I got a call to come back as my blood cultures showed I had bacteria growing in my blood. When I got there they wanted to send me home because I did not have a fever or look sick enough to be septic... I had to stand my ground and fight to get them to keep looking (I had been really sick the past few days). Turns out I was septic and had DVT. Been sent home after being rehydrated when I couldn't keep any food liquid or my medication (include anti-epilepsy drugs), came back again 3days later, same problem and dehydrated, got rehydrated and blood test and were going to send me home again saying they vould not fo anything more than what I could do for myself at home. Again had to stand my ground. My stomach was blocked and I needed surgery, which they saw when they finally did a CT scan... could not even pass a nasogastric tube into my stomach. Had years of repeated severe period pain for years, which was largely dismissed by multiple doctors until one day shortly afyer being diagnosed with breast cancer as part of staging they did CT and other scans and saw a "mixed cyst". When they did surgery it was an endometrioma, snd I had endometriosis, multiple adhesions thicker than a finger. My female gynaecologist (3rd one I had seen), told me in a surprised voice. I had started fertility investigations that had not found a cause about five months earlier. I was angry, I mean I had all the symptoms,been seeing doctors for years about the worsening period, heavy periods clots, They just didn't believe my problem was serious enough to investigate. The only times I have received prompt investigation was when my presentation was typical (eg kidney stones), which I told them was the same sort snd intensely of pain I had when I had a perforated bowel, but was not very agreviated or improved by movement or position. I had brain fog with chemo that did not go away, even years later to the point I could no longer work in IT, and was a delivery driver. Doctors said it was depression and PTSD. I have had depression most of my life, and I knew it did not effect me the way I had become. 12 years later when I my life was falling apart snd I was suicidal they did cognitive testing which showed I had developed cognitive impairment, there was damage that doesn't show on scans. Now I am trying to get help because I have progressive problems with balance and coordination and cognition. But tests did not show anything to explain it, so now I am not believed. I have been told I should be relieved because they have rules out any sinister cause of my symptoms, then fischarged without treatment. Noone wants bad health news... but living without any explanation for what is happening, not being believed or receiving any treatment destroys your life... a special kind of hell. Then receiving a bad diagnosis is good news, a relief, it is validating to finally be believed, and receive treatment that sometimes fixes or helps the problem. Being repeated dismissed by doctors when something feels very wrong to you and is really hard to try to live with eventually becomes traumatic. I have become very jaded, and somewhat hospital phobic.😢
@@SobrietyandSolace I’d just save up to go to a geneticist, cause that’s where you’ll end up either way. Literally a diagnosis you could get in two visits.
I'm so glad you include the parts where the doctors are dismissive or nonchalant about serious things in your videos. There needs to be more awareness of doctors being careless so that more people will know to speak up so it doesn't cost them their life.
It’s especially important because chubbyemu is definitely frequented by med students. Showing them what to do is just as important as showing them not what to do
They often have that reaction to anything we may know more about. Sometimes we know our bodies better and nobody listens. Why has money became more important than a human life? We do have some very special drs that are willing to help us but few and far between them. I appreciate my family dr.
This video is actually anger inducing. My sister, when she was in her early 20s was having a lot of health problems all at once. Every single doctor hand waved it away under similar pretenses. Emotions, or simple feminine issues. "Healthy young people don't have these problems" One doctor even had the gall to suggest the pain was all in her head. I wanted to slug the guy as hard as I could. She looked like she was dying to me sometimes, but they couldn't even be bothered to do tests on her before deciding they knew everything they needed to know to diagnose her. Some real shit doctors out there, for sure.
Hugs, I've been there and it's beyond frustrating. I was finally diagnosed with severe adenomyosis, that was not visible on laparoscopy, but was visible with good ultrasound machines. My uterus was to the point of, essentially, daily labor-like pain as it tried to expel itself. My other organs were shutting down from sheer exhaustion from three years of this level of pain coupled with chronic fatigue syndrome - oxycodone was literally keeping me alive. I was still told for far too long that there wasn't a physical source for my pain. I had to have a hysterectomy at 26.
I am so sorry to hear this... A friend of mine has had a massive lot of severe physical issues pretty much all his life and was originally told he might not become older than 16. He's in his 20's now, but has a massive ton of chronic issues to deal with and he simply can't find any even somewhat decent doctors who would even try listening to him where he lives.
doctors being "compassionate" is a myth. pre-meds are known for being hyper competitive ladder climbers. those are your future docs. These type As are going to rush you out the door whenever it suits them (i.e all of the time in docs office)
i dont understand why it's so hard to get a simple ultrasound in this medical system... meanwhile the dumbass doctors at my hospital gave me one because they thought i had PANCREATIC CANCER when i actually just had mono, wtf
My mother was really sick. She was a young, healthy woman. The doctor told her it was “ her nerves” She got sicker and sicker until she got jaundice. Then my Dad took her to a large teaching hospital near us. They discovered that she had a diseased gall bladder. She could have died.
Same thing happened with my mom, and that was just one of her many issues that doctors have hemmed and hawed over. Now she is in a care facility pretty much permanently due to severe strokes and nurses not paying attention and her getting up and trying to walk and falling giving herself a severe concussion, when she has a stint in her head for fluid build up, pocket of fluid that goes out of her spinal cord, and several now fused bones in her spine. My whole childhood was her in the ER or hospital for many things, and in the mental ward for more issues.
@@vincentender1486man... sorry to hear! Doctors don't know what they are doing, when they neglect patients. They don't only neglect that patient, but everyone who is a friend, father, mother, son, daughter, etc to that person.
As a zebra (EDS) I spent about 20 years trying to get a diagnosis. Every time they ruled out the 'horses' I was told to go home. The attempt to diagnose me stopped. PLEASE believe your patients when they tell you something is wrong.
They don't care...Due to the stringent requirements, Dr's are always in short supply...Most Dr's #1 goal is to prevent malpractice claims; "Can't claim malpractice if I refuse to diagnose it..."
i have eds too! luckily for me, it only took about 12 years of searching for me to get diagnosed (yes, i realize how insane that statement sounds). i was lucky to have severe enough migraines (and to be persistent enough to get medical professionals to listen to a 14-year-old) that doctors couldn’t ignore my case. unfortunately in that time i developed severe chronic conditions i probably wouldn’t have had otherwise. turns out my whole maternal line has most likely had heds since at least the late 1800s. go figure. wishing you the best in getting treatments. good on you for standing your ground
I was searching for answers about my constant low back pain (for 16 years) when I was told I have plain lumbar arachnoiditis, and to get screened by genetics for EDS. I was 37 when I got diagnosed with hEDS. In the following few years (I'm 41 now), I also got diagnosed with a chiari I malformation, craniocervical instability, cervicogenic migraines, a misaligned C2 vertebra, CPTSD, and Ramsay Hunt Syndrome. Being a zebra with this many "stripes" is not fun. I had to quit my job, and I can't even do my hobbies much anymore. Doctors don't listen. Applying for SSDI at this "young" age is a frustrating, difficult process. I have a handicapped parking placard, but get dirty looks when I use it. I forget words, get confused, and get angry. I feel like a burden on my family.
For years i was told my problems were mental health related.... 4 months ago a 4CM (classified as a "giant") brain tumor was discovered only after i advocated for myself and not buying the idea that something was simply my panic disorder. 3 weeks ago another tumor was found on my kidney, so ya this video hits home a bit.
This was such a rollercoaster of emotions, I was on the verge of tears fearing the dreadful words "at autopsy". I'm so glad and relieved to see KC recovered at the end, even though it costed her a kidney.
I may or may not have shed some tears hearing that she survived and recovered. Advocating for yourself is paramount when it comes to your health. And as someone who has to advocate on behalf of others it can be very frustrating dealing with the medical system at times. While not anywhere as serious and dire as this case, I've run into the "it's just anxiety" excuse even as the patient was peeling the skin off their fingers 24/7.
When I reported multiple headaches over the course of a week my doctor was immediately concerned of what it might be. The thing is, my doctor is a PhD psychotherapist that I'm seeing for the PTSD and anxiety disorder I acquired from a long hospitalization after a car accident. If anyone should say something is anxiety it should be a shrink but he was very concerned it was biological. I do not trust MDs at all any more.
I had lung flukes for years and it caused many problems. It took me coughing up bloody eggs until they believed that I was having a major medical issue. “ We don’t see that a lot here” That is as close to sorry I got.
some people are unable to say sorry. Some are taught not to so they won't get sued. An 'im sorry' would solve a lot of problems, but no one wants to admit they made a mistake. If you make a mistake, pay for it. Integrity is what is lacking.
This story reminds me of the different reactions and treatment I (male) and my sister have received for our migraine headaches. I've had very helpful neurologists who've tried not only different pharmacological approaches but also suggested lifestyle changes. My sister's complaints were downplayed and she was told they weren't genuine migraines. Nowadays, I live a happy, migraine-free life by avoiding my triggers and my sister finally received proper medical attention after nearly dying from a brain aneurysm.
Now THAT is terrifiying...I'm glad my allergist took my migraines seriously (yes I got diagnosed with chronic migraine by an allergist, my main migraine symptoms are sinus pain and olfactory hallucinations, so I got sent to the allergist to see if allergies were the issue, turned out to have no environmental allergies, and got perscribed a migraine preventative, and sent to get an MRI done just to make sure the hallucinations were indeed just a migriane symptom and not the result of a tumor...)
Yup. Honestly, I've been lucky compared to your sister's expereince, but I've had neuros who have told me it was my weight, or anxiety, or it was real once but now I am just imagining it etc etc. Finally saw a woman headache specialist and she was brilliant, but it was a long road to getting there. Including being disbelieved about med side effects, and having to wait a year before they approved an MRI. And the reaction in the ER is always a mix of condescending (don't worry honey), and the typical why are you here for a headache, etc.
being a girl and having migraines is so unnecessarily difficult. i’ve seen multiple doctors about them. the first was a man. he’d been my doctor my entire life, and i’d never had any problems with the care he provided me. i’ve had infrequent migraines about as long as i can remember, but when i was maybe 12 they got much worse and much more frequent. they weren’t really an issue before because i only had one every 2-3ish weeks. it got to a point where attacks lasted so long and happened so often they never truly ended. at this point, i go to that doctor, asking if he thought i had migraines and if there was anything at all i could do to find some kind of joy in living my life as i used to. he said he didn’t think they were migraines (no distinct aura back then. mostly pain and light sensitivity) and to try midol. like sir, do you think i haven’t tried that yet? so i go on home just raw dogging these migraine attacks. they eventually get a little easier to deal with from me getting used to them and them actually decreasing in frequency for a few years. i go to a new doctor, and she immediately says “those sound like classic migraines” and we started working on ways to identify triggers and make living with migraine easier. i don’t have everything figured out, but my life is a lot better now. idk. the whole situation makes me a little sad.
@Dominic Howell I've seen a neurologist since then, but he was hard to get ahold of and I couldn't get him to increase my medicine dosage, or do any sort of tests when stress from chemistry classes in college made the hallucinations start coming back, so I had to see the allergist again to get that taken care of, and they went away again after increasing my dosage by 10mg (except if I'm extremely sleep deprived and stressed, but it went from a daily occurrence to a couple times a year.) While olfactory hallucinations aren't a common migraine symptom, they do occur in some people, and my mother occasionally gets them as well - though she tends to hallucinate the bitter-almond type smell associated with natural gas, while mine are usually of rotting meat (very reassuring smell to have bombarding you constantly.) I had another MRI done after seeing the allergist a second time since he was worried the first one might've missed something since the hallucinations had come back despite medication, but they didn't see anything concerning the second time either. The migraine issues started when I was in 4th grade, but didn't become chronic until my dad started smoking again when I started junior high, and I couldn't get my doctor to refer me to an allergist until my freshman year of highschool, which is what lead me to actually getting treatment that helped, and the hallucinations didn't start bothering me again until sophomore my second semester of college, and haven't been a serious issue since my medication dosage got increased, so I feel reasonably confident that that situation is under control. I'm actually kind of amused that you brought up IBS as well, since that's a whole other related kettle of fish I've been dealing with. Around sophomore year of highschool I started getting infrequent abdominal pain, and noticed some asymmetrical swelling in my lower abdomen. I brought it up to my primary care doctor (same one who let the migraines and hallucinations go unaddressed for 3 years) and she said it was "normal for girls going through puberty" and should go away within 6 months. 6 months later, it was still happening and slightly worse, and she said the same thing. 6 months after that, it was still happening and slightly worse, so I brought it up again, and the same thing happened over and over again until I convinced my mom to let me see a gynecologist senior year out of pocket (our insurance won't pay for specialist visits without a referral from another doctor - second allergist visit was also out of pocket since the neurologist was very unhelpful.) The gynecologist found nothing wrong, and referred me to a gastrenterologist, who after doing tests for some inflammatory and thyroid disirders that came back negative, concluded that I had IBS, which is common with chronic migraine patients - and in those cases is believed to be the result of abnormal signals from the brain resulting in the intestines not really understanding what they're supposed to be doing, and doing weird stuff instead as a result. It also turned out that I had a pretty bad muscle spasm happening at one tiny section of my intestines, and it was basically twitching so much that the muscle fatigue from it was causing the pain, so I got prescribed a mild antispasmodic, and the issue went away, and was told to get a colonoscopy if things got worse. In college I developed pretty bad constipation, and got some meds for that, which also helped with the swelling, until things got really weird during lockdown, at which point the swelling got significantly worse, became painful if I pressed on it, and I got sick I'd I consumed anything sweet (like, just fruit or a little sweet tea would make me sick.) This time gastroenterologist decided I needed a colonoscopy right away since that was NOT normal, even for IBS, and I turned out to have a massive polyp that had to be removed. After that the swelling went down dramatically, I could eat sugar again, and my constipation issues improved a lot as well, so the polyp seems to have been a huge part of the problem, and was probably slowly growing in there for years...
That was the best ending to this kinda story, holy crap! Having lost my dad to cancer, I know how painful it is to look back and wonder if we hadn’t fought hard enough for a diagnosis early on. But that’s how it is with hindsight. The advice to be your own best advocate is absolutely on point, too.
My sister had a cancer that "does not escape the abdomen" make it into her lymph nodes. When they tell you it doesn't spread, they mean they haven't seen it spread, not that it can't or won't.
Cancer that doesn’t escape the abdomen doesn’t exist, whoever said that is an absolute poo brain. If melanoma/skin cancer can get into the brain a cancer in the abdomen can 100% end up outside the abdomen
My mother saw doctors because she found her fine motor skills were deteriorating. The doctors told her she needed a holiday I.e. was suffering anxiety. It was actually the first stages of Parkinson’s Disease. But it’s not only women. My father was put on all sorts of weird diets by doctors to help his problems when he actually had a bowel cancer growing inside him.
@@acmhfmggru In my mother’s case, early intervention would have helped and she would also not have felt she was being ‘silly’. It was when they moved to another state and saw different doctors that the truth became known and treatment began. In my father’s case, the crap he put up with ensured that the cancer had grown too significantly for his life to be saved. How dare anybody suggest that doctors have the right to withhold truth from their patients.
This happened to me. At 25 I spent 3 years in extreme pain and had a history of gall bladder cancer in my family. Doctors kept telling me I had acid reflux. 3 years later my gall bladder ruptured and almost died. Doctors just kept ignoring the symptoms because I was "young, fit, and male." I ended up having 8 surgeries and 10 years of my life stolen from me.
20 years a grumbling appendix here, the pain I experienced during those years was so bad they never picked up on it until my appendix was rotted and started leaking. I feel your pain. Same thing as you they told me acid reflux and ibs or maybe chrons then more testing shows nothing. It's a joke the medical system when these things happen.
I am also a zebra. A zebra is anyone with what is considered a "rare" disorder or disease. I put it to the medical community that these conditions are NOT rare, simply under diagnosed and missed because Dr's are only looking for horses. Many of us zebras die waiting for treatment and diagnosis because of this practice
I was also a zebra but luckily for me my dr listened to me I had a pheocromopsytoma it was removed along with my right adrenal gland I felt better almost immediately 😀
Once upon a time long ago... I had a physician repeat that fantasy to me ... hoofbeats -> think horses, not zebras. I stopped him flat in his place by replying -> "Why the hell would you do that?" He looked stunned and puzzled. Before he could reply I continued .... "Within ten miles there isn't a single horse. There are however several thousand cows, nearly as many pigs, hundreds of dear and dozens of Elk." "Why on earth would you follow such inane guidance?" That was enough for him to now hear me. It was not enough to change his thinking, or the thinking of another. In the end I diagnosed and then successfully treated myself for subacute bacterial endocarditis. Doing that was not easy and carried extra dangers as I didn't have access or support in getting the tests and supplies I needed. I had to bend the rules all out if shape. And 30 years later I finally had my diagnosis confirmed by a rather incredulous ER doc who could confirm from changes in my heart geometry that I had indeed had SBE all those decades before. And had it gone untreated, it likely would have killed me. Our medical systems are based on probabilities. Those are reflected in the algorithms physicians use, and that insurance companies mandate. They assure that 15% of patients are chronically misdiagnosed. As a result we each at times must be our own physicians, or at the least demand proper diagnostics. We must be the squeaky wheel demanding attention. that cannot be ignored. Today, people suffering long COVID, and the other lingering impacts of COVID, including clotting issues, brain fog and brain injury, and many other issues are among those who must fight for care. So too are those suffering latent hormone related cancers from blue LED light exposure, as well as rapid eye damage, macular degeneration, tinnitus, optical migraines, migraines, and so much more. This whole complex of issues and symptoms caused by overexposure to intense blue light (50 times too intense), and high frequency light flicker (100 or 120 hz) is utterly unknown to physicians, and only barely known to researchers. Very soon the rise in rates of breast, prostate, GI, and rectal cancers will not be able to be overlooked. Sadly, it is likely for them to take years to understand the cause - a cause everywhere around everyone - LED light.
That's about how it felt at the time too. Have to admit, I myself am pretty glad things turned around as well lol. And thank you so much - KC (Katie Coleman)
Same here, been having super painful cramps since I was 18. It's just period pain, they said. At 24, I found out it was a 10cm mass from endometriosis.
I hope that every single one of her doctors was informed about how they misdiagnosed her cancer and put her life at risk. All they had to do was imaging and they would have seen something.
Over-imaging is also a real consequence. In her case, imaging was definitely valid, but he discussed horses for a reason. She had such a rare condition, it isn't her doctors' faults for missing it, necessarily. The only large red flag to me was the extremely abnormal resting heart rate. That screamed auto-immune or tumor to me. Then again, elsewhere, someone might say infection. To state "all they had to do was image" implies there was an obvious place to image. If this was sarcoidosis, we would be discussing lung. Carcinoid could be lung or abdomen. Thyroid would be neck. Neurologic masses would be neuro-axis (likely brain). Leukemia would be marrow, which labs would be the initial tip-off before you see abnormal bone findings. Thee point is, saying "image" without target does no good. If you image the wrong spot, you might be less inclined to image another later. These things always seem easy when all the details are known/ laid out, but hindsight is 20/20.
@@cameronno6039 yeah I don't blame them for not realizing it's cancer, but someone having debilitating pain every month isn't normal and that should have been actively looked into and attempted to resolve before the 2 year mark
@@pinkpink-kb6dl She was referred by her PCM to GI, GYN and cardiology. She saw Emergency med (they get imaging for the smallest of reasons). She got scoped by GI (upper or lower). Her workup was extensive; it just was not targeted at the right spot. I would love to see her chart and know what was present and when. I wouldn't be surprised if she had imaging that was abnormal but missed as well. As for her pain, fibromyalgia is a catch-all rheumatologic condition that causes debilitating, idiopathic pain. It's a diagnosis of exclusion that's diagnosed daily. It's never normal, but we often don't find a trigger. It's not the only painful, neurologic/ rheumatologic condition, but it's an example to show pain is bad for everyone but may not always help us clinically.
@@cameronno6039 But she kept having extreme abdominal pain so imaging would be warranted. Even if it was period related, it could have been endometriosis, ovarian cyst, or fibroids. High resting heart rate and unexplained rapid weight loss screams tumor or growth of some kind. All they needed to do was some kind of imaging first thing.
@ferretyluv It's easy to say in hindsight given the way this was laid out to us. However, the gastroenterologist didn't think so, nor did the ED docs/ providers. Given she had SO many providers, I am inclined to think things aren't as stated. Also, her issue was renal. GYN will get pelvic ultrasound and renal won't be seen for the pelvic conditions you mentioned. The tachycardia is nonspecific, could be renal, cardiac or systemic. Cardiology was unable to diagnose her. I don't recall her weight loss. Saying, "get imaging" isn't useful unless you know where to image. Any of the pelvic conditions you mentioned aren't seen by the most likely order (pelvic ultrasound). A CT abdomen/ pelvis would have vs caught this. Pelvic MR may have too (likely on a scout image.. easy to miss). You aren't likely to get a PET/CT without focal concern or fever. Seems to me she was an unfortunate circumstance.
Sadly, this story was very familiar. My father had cancer but was sent to a psychiatrist because, obviously, he must have been imagining his abdominal pain. He died at 56.
I'm a paramedic and I'm a 23 year old healthy female. I take even seemingly benign or insignificant symptoms seriously in my own patients because there's been instances in my career where something small indicated something very serious. Your index of suspicion as a medical professional has to be finely tuned. It happened to me. I had to fight with doctors to insist they continue testing when I had unexplained GI symptoms that were dismissed as menstrual symptoms/indigestion/anxiety. I ended up being transported by EMS to the emergency department in a city I was visiting because I had vomited so much in the last 2 days I lost consciousness and went into an arrhythmia from a severe electrolyte imbalance and dehydration. Turns out, I had a literal fucking hole in my stomach and the lining of my GI tract was completely inflamed. It took me months to recover. 🤦🏻♀️ we have to be patient advocates but we also have to advocate for ourselves. Especially as women because often times we have different presentations of illness from the textbook presentations.
Cancer = 2nd opinion mandatory. If first 2 disagree go for a third. Morons are very common in the medical profession because there is no penalty for not diagnosing and treating the patient in a timely fashion. This is usually true. Sue them! A failure to do what is required of them is something you can sue them for and try to get M.D.s to help take away there licences. They kill people by failing to do what they are supposed. Murder usually has worse consequences.
This is a really good example of how some women are treated when it comes to medical issues. My poor mom has been to multiple doctors over the course of 20 years for stomach issues, and not one of them has taken her seriously. They always write it off as anxiety or being emotional. I’m so happy the lady in this video got the help she needed, who knows what would’ve happened if the doctors continued to not take her seriously.
I'd say most women are treated like this unfortunately. My sister was just diagnosed with cervical cancer and her previous obgyn wrote off her nearly constant and unpredictable bleeding as normal. My sister reached out to her doctor so many times just for the doctor to say "I've done all I can". My sister continued reaching out and her obgyn just straight up ignored her. It only took a month of being with her new obgyn to find out that she not only has cervical cancer but also fibroids. 💔
@@metalbabee My heart goes out to you and her and your family ❤️ that is so awful that the doctor didn’t take her seriously, I hope now that this new one seems to care that she will get the help she needs and get better! 🙏🏻
ALWAYS advocate for yourself. A month after a severe car accident the hospital was ready to send me home. But 5 days before the scheduled release date, my nose kept running. They figured it was allergies. I told them I wasnt leaving until we make sure its not cerebral spinal fluid. A CT scan confirmed it to be CSF and I later got a crainiotomy.
Testing the drainage fluids for SUGAR (an inexpensive blood sugar test strip can be used!) is a decent "hard &fast" test for CSF. *Cerebral Spinal Fluid **_DOES_** contain sugar,* but *"normal sinus drainage" DOES **_NOT_** contain sugar!* I knew a woman years ago who *had endured "sinus drainage due to allergies" ALL OF HER LIFE,* until an intelligent NURSE tested the fluid for sugar. BINGO - SUGAR INSTANTLY IDENTIFIED! ONLY THEN did an MRI reveal the congenital "hole" into her brain, which had been leaking CSF for her entire life. (Surprisingly, she never had meningitis nor any other adverse effects from the leak.) A fairly simple surgical procedure ensued (done through her nose!), which patched the leak completely.
@@Fishy_17what an odd question. should op not have known about CSF? is it forbidden knowledge? the world is huge, and there’s a lot of ways to learn a lot of different things. instead of asking why somebody knows something, maybe ask yourself why *you* don’t know.
@@moose5413 I was asking why because I didn’t know what it was and was wondering how someone would stumble upon such knowledge. If you want to add an irrelevant point to my question and language to rephrase it in such a negative manner, you’re free to do so, however my question was intended to be more exploratory and curious.
I've been told it was anxiety so many times. When I was about 30 I was finally diagnosed with hbp and when I found out more about the disease I realized I probably should've been dead years ago. The most response I got from doctors was that I was told to take as many ibuprofen as I needed. In high school I was going through several bottles a week thinking this was normal bc that's what the doctor told me to do.
I'm glad you're not dead in spite of the doctors and the ibuprofen. A high school kid should not have been gulping down so much of that stuff. I don't suppose they thought at that age you could have hbp but you can if it's genetic.
Something similar happen to my mother. For years her symptoms were put down as "her nerves". By the time she found a doctor that knew what he was doing, one kidney was half functioning and the other only a quarter functioning. Very soon after diagnosis she had complete kidney failure and heart failure. She had to go on a salt free diet and be on dialysis for the rest of her life, because the heart failure she was ineligible for a transplant. She died at age 55. Too many women are diagnosed incorrectly or have their concerns shrugged off. Makes me wonder how many would still be alive and well if they had been taken seriously, sooner.
The comment about hoofbeats: horses, not zebras resonated with me. I have an extremely rare disease, Variegate Porphyria, and it took 24 years to get a correct diagnosis. I suffered from age 13 to 37 and was nearly dead when diagnosed. Fortunately, my parents had the means to take me to the Mayo Clinic, where I was diagnosed; in 1997. Much more is known about the porphyrias today, and I have learned how to control my disease (for the most part). At age 63 I'm in great health, finally! And so happy KC survived and is thriving. Blessings to KC, from 1 zebra to another ❤🦓🙏
I'm glad you were finally diagnosed and could get your health back! The American medical system doesn't diagnose anymore - just makes assumptions based on profit.
My brother had porphyria had because he passed he had cancer all over his body he was 36 when he passed. He had porphyria for years before he was diagnosed with it.
I was dismissed multiple times with my doctors including ER docs. My pcp even called to cancel an appointment i had with another doctor in the clinic because she said it was just "anxiety." I was either told it was anxiety or i was drinking too much caffeine. I knew something was wrong. I was losing my memory, i wasn't myself. It had gotten to the point i was so delusional i called 911. They took me to the hospital. At first they thought it was mental health again, but the psychiatrist there was smart enough to bring in a neurologist. Turns out my immune system was attacking my brain. I wonder where id be if i hadn't been treated for it...
That dr has no right canceling other appointments, that's unethical because it's your right to get other opinions, goes to show he thinks he knows all. I'd be sure to let him know and the state medical board how incompetent he is at the end of it. Life's hard enough, you don't need people you're paying bookoo bucks to basically make your life harder. Sorry but I have 0 patience for incompetent medical staff, I've been thru it and thankfully got my issue resolved.
Back in 2007, I had a very painful experience that lead me to an ER, where I learned that I had gallstones. I was advised to avoid any and all fatty foods as this could trigger further stone attacks. Two years later, I had a very painful stone attack that lasted for days. When I turned up at the ER, I gave a urine sample that was shit-brown. I told the doctor that it was pancreatitis, caused by a stone attack. He laughed me off, saying that there are lots of reasons for brown urine and "tummy aches" (I shit you not, that was what he called my pain). After hours of suffering this pain in a bed in a section of the ER that was under construction and had no AC, the doctor came back with this sheepish "Hyuk, who'da known" attitude and said it was Pancreatitis, insisting that there was no reason to believe it was but it just so happened to be. I would have died if I hadn't pressed the matter. Trust doctors, but not blindly. You must press on when you know something is wrong and they tell you that there isn't.
@@deedeeseecee9294 They detected extremely elevated levels of the enzymes that the Pancreas creates in my blood. Basically, it was churning out the stuff used to break down proteins, fats, and other organic molecules much faster than normal. They did a contrast-dye scan to confirm that it was enlarged. After two weeks of eating and drinking nothing, getting all my water and calories from a bag, it had shrunk back down and they were able to go in and take out my gall bladder
I know too many women who have been told "It's probably just your period" and when the problems persist it's always then straight on to the bowels. It's also utterly bizarre to me the reluctance to operate on young people; my 15 year old niece has very problematic gall stones but they won't operate because she's too young, her physical and mental health are suffering because of it. The painkillers and anti-depressants are probably going to do much more long term damage to her body than removing her gall bladder would.
As someone who studied alongside doctors, the only language they understand is money. Tell them you'll be taking your daughter to a new PCP if your concerns aren't addressed and be ready to follow through on it.
At 58, I was experiencing extreme blood loss and large clots during my period. They were incapacitating. I went to my NP and she said it was just peri-menopause. After three months of it getting worse and worse, I took photos of the blood clots I was passing and went back to the NP. She sent me to an ob-gyn. Cutting to the chase, I had endometrial cancer. Yes, I left that NP and now go to an MD. The NP dismissed my symptoms and it almost cost me my life!
This happened to my mom but by the time it was discovered she only had a few months left to live. She was hospitalized several times over the years from losing so much blood. They never checked her for cancer. She was 63 when she died from endometrial cancer, there's no excuse for why the doctors she saw never considered cancer. It took her being life flighted to a hospital in a bigger city for a doctor to reject the peri-menopause diagnosis and quickly find she had endometrial cancer.
Y'all, don't ignore chronic headaches!!!! I've experienced headaches lasting up to 4 days since I started puberty, 4 years ago I started seeing flashes of light but the ophthalmologist said my eyes are fine. Come last month I find out I have a Meningioma, basically a brain tumor 🤦🏾♀️
I 🙏 for you and know, YOU WILL RECOVER. THIS IS JUST A PIT STOP IN LIFE, AND YOU WILL CONTINUE ON. I also tell my 24 year old son that, too. He was life-flighted to the ER for a fever of 104 and throwing up. I was going to take him to the Dr in the morning, but at 1am, he couldn't move his head or body. I NEVER GIVE MY MEDICATION TO ANYONE BUT DECIDED TO GIVE HIM ONE OF MY 800 MG IBUPROFEN. We got my son to the ER, and they thought they messed up with his EKG as it was showing abnormal. When it was abnormal again, they rushed him out of the room to the cardiologist. They said, "we are waiting to see if the cardiologist was going to perform this test that detects an enzyme called TROPONIN. In a normal person, the highest your Troponin levels should be, is 200. MY SON'S WAS 23,000. THEY THOUGHT HE WAS HAVING A HEART ATTACK AT 24. BEFORE I KNEW IT, HE WAS BEING LIFE-FLIGHTED TO THE HEART AND CARDIAC TRAUMA HOSPITAL IN ICU. The cardiologist team said they were waiting for a very sick boy. HE ENDED UP HAVING MYOCARDITIS AND PERICARDITIS. THEY SAVED HIS LIFE. Bit while in the ICU A RARE VIRAL SYNDROME WAS TURNED ON CALLED "STILL'S SYNDROME". I IN 1 MILLION OF A CHANCE TO GET THIS AND HE GOT IT. He was in ICU for 2 weeks, transferred to IMU (IMMEDIATE CARE UNIT). He was released on 4/11. He was home for one week, and I was taking him to his first outpatient visit to the Rheumatoid doctor. While in the waiting room he started running fever. He said, "Mom, I'm weak, I need a wheelchair". They wheelchaired him into the patient room and started taking his vitals. His vitals were dropping fast. HE SAID "MOM, I FEEL LIKE I'M CRASHING". I WAS REASSURING HIM "THAT IF HE PASSED OUT, DON'T WORRY, THE DOCTORS ARE HERE AND WILL BRING YOU BACK". HE'S ONLY 24 AND NEVER IN HIS LIFE HAD ANY MEDICAL ISSUES UP TO HIS FIRST ER VISIT. SO, HIS BLOOD PRESSURE DROPPED INTO THE 40s AND HE STARTED TURNING SO PALE AND HIS LIPS WERE TURNING BLUE. THIS IS MY ONLY CHILD. I HAD TO GO THROUGH IVF. WE PREGNANT WITH TRIPLETS, MISCARRIED 2 AND HAD HIM, SO HE MY GIFT FROM GOD. When his vitals dropped they called the paramedics. Thank God the same cardiologist was on call so he treated him for the myocarditis when he was life-flighted. Now, they found fluid in his chest so they quickly had to get him to the Heart catherization lab. He had a chest tube inserted. He ended up having 1 liter of a bloody mucus fluid drain, then another 460 ccs, then more. Finally, all of the fluid drained out, and they removed the tube. In the meantime, the cardiologist, infectious team, virology team & hematology team all tested him for weird stuff, and everything kept coming back NORMAL. I WAS THANKFUL. THEY TESTED HIM FOR CANCER AND IT ALL CAME BACK NEGATIVE. HIS BONE SCAN CAME BACK NORMAL. When he was diagnosed with STILL'S SYNDROME during his first visit, he started developing cyclical fevers, joint swelling, rash, diarrhea. That's how they were able to diagnose the Still's Syndrome. His White Blood cell count was 47,000. OFF THE CHART DANGEROUS. THE HIGH SHOULD BE NO HIGHER THAN 10,000. STILL'S IS LIKE A RHEUMATOID ARTHRITIS DISORDER. REMIND YOU, THIS SYNDROME FOR TURNED ON WHILE IN THE HOSPITAL FOR THE MYOCARDITIS. The team of doctors got him approved for this rare medication called Anakinra. It's a $4,000 /month medication that, thankfully we don't pay because he MEDICALLY NEEDS THIS MEDICATION. My son was released on 4/25, so this is all fresh. He has to give himself injections in his stomach every morning. His fevers went away. His 1st cardiologist visit went good. His heart is getting back to normal. His Rheumatoid doctor will t take blood in 2 weeks to manage his levels. MY MORAL OF THE STORY, DO NOT ASSUME IF YOU HAVE A YOUNG ADULT AS YOUR CHILD, DON'T ASSUME "IS JUST THE FLU". I'VE JOINED THE MYOCARDITIS FOUNDATION AND READ STORIES OF YOUNG KIDS THAT DIDN'T SURVIVE. THEY WEREN'T TREATED PROPERLY AND SENT HOME WHERE ALOT OF THESE KIDS DIED. THE DOCTORS SAID "THERE'S NO WAY I COULD'VE KNOWN IT WAS MYOCARDITIS, BUT THE FAST ACTING ON OUR PART HELPED HIM AND THE DOCTOR ALSO FEELS THE IBUPROFEN I GAVE MY SON BOUGHT HIM SOME TIME. My apologies for the long story, but I feel everyone should know my son's story. God Bless to all of you and hope you never have to experience any kind of suffering like her story or my son's story.
I have had terrible headaches since age 17. Was given old style pain meds. Kept after docs for years, nothing. They changed into visual migraines followed by regular ones...oh well said Dr's. One told me it must be hysteria because my mother had headaches, but I pointed out gers stopped with menopause isn't that a clue? No. Finally 3 strokes, 2 heart attacks, with no idea of "cause". One determined Dr hooked me to a heart monitor for 21days discovered a heart rhythm irregularity that occurred when it felt like. This finally led to mri of heart, and looky there a large aneurysm on my aorta at the heart. Hmmm, I suggested a connective tissue disorder EDS, and suddenly, light bulbs went off for neuro, cardiology, and now I am abandoned by medicine except to have my aneurysm growth measured. No one manages EDS, so even if I have a knife sticking out of me, I get the cold shoulder! Sucks to be a zebra.
I’ve also had a Meningioma, on my brainstem and top of spinal cord (Forum Magnum) in my case, diagnosed and removed* in 2017 (one month from diagnosis to surgery, due to fact mine’s particularly dangerous location, and live an hour from big medical center) Best thing you can do is ask your doctor a lot of questions and do a lot of research online to keep yourself informed and know the right thing to ask. Good thing is most us with Meningioma’s have best luck of all brain tumors/cancers, they grow very slow and do not invade the brain. They grow on the lining of brain and spinal cord, called Meninges. Though, with size and limits of skull, increased intracranial pressure is a cause of many’s symptoms, and can be treated in many ways. Surgery can potentially be curative in most cases, unlike most brain tumors. The hardest thing with Meningiomas for me is sometimes being told to wait and do nothing for awhile, but again, that’s also because they’re usually so slow growing, and also can mean not having to experience chemo, which I’m thankful for. I wish you all the best! It’s okay to feel however you feel about your diagnosis and what comes next. Let me know if you have any questions or need any advice. (I’ve read and own multiple textbooks on brain tumors and cancers I can reference, plus I’m surrounded by nurses in my family. I also my job is in academia as researcher too) **truth is, I still have a Meningioma. due to my, atypical case, (location on brainstem & spinal canal, pathology, surgical success), and so it’s something I’ll always have to deal with, which is why I’ve stayed informed and make myself a resource for others who don’t have time to read all the books and papers I have*
@@joywebster2678 i would reccomend trying to see a geneticist that specializes in EDS. Its true that there's no cure for it, but there are various tools to help with quality of life as your condition changes. My brother in law has EDS and his geneticist helped him get a wheelchair and wrote a letter to help get him on disability. There is also an EDS organization much like Katie's that you can reach out to. Don't give up hope! EDS is chronic, but not untreatable!
This is why I have sever complex PTSD against the medical system and all those who work in it. 90% of my medical problems were caused by their negligence and mal-practice. I am terrified of doctors. Especially their narcissistic attitudes. I hate them, I hate them so much. They have utterly destroyed my life more then all abusive persons I've known put together.
I am a senior male,, have had the same crap from doctors. After 2 years of saying I had tummy pains they eventually found out I had kidney failure so I spent a month in Intensive care. Then 2 months of dialisis. Eventually I was sent home by myself which should never have happened. Similar experience a few years before, fronted ER feeling very poor and really not quite lucid. After 11 hours a registrar came, looked at the same chest X ray and told me I had pnuemonia which I had guessed. Given an injection and prescription and sent home by myself. Several other similar stories
@@ldnwholesale8552 my stories are countless, the malpractice started when I was still in my mothers womb. to this day I suffer a host of ailments and daily dialysis that is all linked to the hurt the doctors did to me. I trust none of them, none. I never will. I personally struggle with loathing hatred and have to force myself to be civil when I have appointments. I literally have ptsd and have to constantly calm myself when at the hospital or clinics. I hate them I truely and bitterly hate them all.
I had a friend with almost this exact condition and situation. Sadly, when she was finally listened to and diagnosed (after being dismissed by so many doctors over so many years) it was too late. By then her cancer had spread throughout her body, head to toe. She died in 2012, after 2 surgeries weren't able to help.
My volunteer firefighter dad went to his doctor for two years with sinus and lung symptoms. He pulled out his prescription pad every time and wrote a prescription for antibiotics for a sinus infection. He went for a second opinion and they gave him a chest x-ray. He had lung cancer, and it was too late. It had spread thanks to his PCP. Both of my parents died from medical care.
This story is a minor miracle. As little as 30 years ago, KC likely would have died with nobody understanding exactly what killed her or how, even after the autopsy. The level of science and detective work that goes into modern medicine always fascinates me.
@xxf like the USA where 600k people go bankrupt per year for medical bills and it costs more than all other countries including those with universal healthcare options, and on top of it it's inferior as demonstrated by the 10 year lower lifespan on average than other developed countries. The US is behind in everything except QOL for rich people.
It's complicated because I'm furious that a healthcare professional didn't immediately go 'pain, odd bodily changes, AND weight loss? Bruh, that's cancer.'-- like I even guessed correctly for my grandfather right before we found out he'd had cancer (they'd been searching right above where it was growing so naturally kept coming back with nothing). But at the same time kudos to the medical team that actually DID help her, happy she's safe.
That's the conclusion they come to with Male patients. For female patients it's always "it's your period, you're just upset, have you tried reducing stress?"
It may seem obvious to you but it's really not. Doctors can't just guess at cancer anytime there's something weird going on. Pain, odd changes and weight loss are incredibly unspecific, they could mean absolutely everything and anything from cancer to autoimmune diseases to parasites.
@@iz2333 But surely if those are the symptoms they should at least check. A tumour is a lump of cells your body doesn’t need, of course feeding those cells is going to cause weight loss!
@@noelstar1456 Checking things is inherently expensive. Unspecific symptoms get no treatment because you'd need to run a fuckload of tests, that cost money.
@@noelstar1456 As I already said, those symptoms are not specific to cancer at all. There's a long list of things they should check for but they have to rule out the likeliest and easily verifiable options first before moving on to something as rare and complicated as cancer. Doctors are just as fallible as anyone else, so they do sometimes miss obvious signs but imagine if they immediately assumed cancer any time a patient presented with cancer associated symptoms. It would cause millions of unnecessary procedures each year, some of which are very invasive and risky.
What really needs to change is how doctors approach women's health. It's 2023 and it is insane how many doctors still basically just diagnose all females with 'female hysteria' and tell them that feeling like they have an ax buried in their stomaches every month is totally normal and doesn't need any tests.
I agree, doctors need to change the way they diagnose women, but not just women. They need to change the way they diagnose everyone. There are way to many excuses and generalizations in the field, I've never seen a profession that was so professional and childish at the same time. They come up with every excuse imaginable for inadequate care, up to and including putting unreasonable responsibility on the patient to "advocate" for themselves when they are sick, probably can't think straight, and don't have the same authority or expertise as the doctors.
Kidney cancer can be difficult to find. My late husband, who died from a congenital liver disease, felt his early because his spleen had been removed when he was 26. He was lucky. He was 41 when he was diagnosed, and died at age 67. KC, I am so happy to see you are also a survivor!
The ending with the real KC honestly made me smile so big and it’s amazing that she pulled through. This is an amazing end to the story and I’m sure stressful for her as she went through it.
Thank you. This comment made me smile. It was very stressful but I'm incredibly grateful for where I am now. While it certainly wasn't a fun experience, I live my life more fully now than I ever did before and am grateful for that. Life's fragile, enjoy every second of it. - KC (Katie Coleman)
I'm not even 30 seconds in yet and already I am upset for KC. Abdominal or pelvic pain is _always_ "just period cramps" or if it doesn't line up with your period then it's "just mittelschmerz." That's what I was told over and over again for four years. It didn't matter that I told them I was in more pain than I was after shredding my fingertip off with an angle grinder, didn't matter that it lasted for DAYS. After four years of trying to get help I was finally diagnosed with endometriosis during a laparoscopy last week. That's actually a quick diagnosis for endo, normally it takes around 7 years. Which isn't great, considering this is a progressive disease that can fuse your organs together. So yeah, normal cramps can be pretty painful, but WE KNOW WHAT CRAMPS FEEL LIKE, WE CAN TELL WHEN SOMETHING ELSE IS GOING ON.
Misdiagnosis this bad is criminal. I understand how bad it can be. I had an eight pound tumor attached to my ovary and twisted into my bowel. It took three years to find a tumor that big! Thank goodness it was benign but I really thought I would die from it because no one could figure it out. So painful and it blocked my bowels. It ate my 30s. Also was diagnosed with fibromyalgia when I, in fact, had psoriatic arthritis (I told my doc about the sores on my head and other spots, but 😂said, “Sorry, I don’t do skin.”). I figured that one out after a bad asthma attack for which I was given large doses of prednisone. I hadn’t felt that good since my 20s (prednisone shouldn’t help fibromyalgia). I went to a new rheumatologist and she had me diagnosed with PsA in 30 seconds. PsA is “forever” but at least there are treatments for it that put it into remission. The trouble with medicine is that General Practitioners don’t necessarily have the ability to diagnose the big stuff, and specialists only want to stay in their own lane. Patients have to do their own legwork because most docs aren’t going to.
Totally agree. I have POTS and my GP just kept going "Well, some people just have naturally high heartrates". Despite me saying I actively avoid standing for long period because it makes me feel absolutely horrendous and it makes me faint. And I had weeks of evidence of my heartrate thanks to a smartwatch. Still getting a referral took several attempts. The cardiologist was immediately like "Oh yeah, GPs don't know anything about stuff like this" Well, then he should've just referred me immediately. Not dismiss me and treat me like a hypochondriac.
I have chronic asthma but can no longer take Prednisone as I have a serious adverse reaction to it. It caused me to suffer retinopathy, I was lucky to see a consultant at the hospital eye clinic who diagnosed this so I was able to stop taking Prednisone before I had permanent eye damage. My GP had never heard of Prednisone causing retina damage, the hospital consultant had to send him some papers on this. Once off the Prednisone my vision recovered in a few months.
it's always "anxiety" or "imagining it" when you're a young woman. reminds me of the time a dr dismissed me from hospital, with appendicitis and fluid in the right illiac fossa, saying it's "normal with you women, during menstruation blood leaks into the abdominal cavity".
That's terrible. Wtf, that doctor didn't even know basic anatomy or how periods work! "Blood leaks in the abdominal cavity" 🙄 I hope you were treated by someone way more competent afterwards, and that you recovered without further issues.
. I hate to say it but he was actually correct about that part, but it absolutely should only be a small amount that doesnt involve other symptoms. Aka he was still completely wrong to dismiss anyone for having retrograde menstruation as the pain should only be similar to period pain and it would still be worrying if it involved a lot of fluid. I am sure he heard about that condition somewhere along his education and used his vague sense of superior understanding of anatomy that he didnt even have or actually fully understand to push people away when he didnt feel like dealing with something complicated.
The follicle on an a ovary may bleed into the abdominal captivity after ovulation due to higher levels of luteal progesterone and luteinizing hormone (LH) but the amount of blood would be minimal. If this happens, the woman may experience ovulation spotting.
I agree, that’s why most of my doctors are female tired of hearing it’s anxiety or your period or whatever else they could blame it on when I was younger. For too many doctors human = man, and we women are treated like some rare species they know nothing about nor to they care to learn about. Still use very small numbers of females in drug trials for research
It’s just so weird to me when doctors do the basic tests, don’t discover anything abnormal (beyond what the patient obviously presents with), and then… don’t do more tests. Don’t refer to any specialists. Sends the patient home without telling them what to do in case the problem remains. I don’t understand how you can do that and then go home and sleep at night, knowing there’s a scared and hurt person out there with no idea what to do, and that you were their only hope of figuring out what options they had.
God complex. If I am not a good enough doctor to find out what's wing with you, either you're crazy or there's nothing wrong. It is never, never the case that I don't know and need to find you a doctor who knows . Because I am Dr God.
@@acmhfmggru My issue is that most doctors don’t even say that. And why is it so hard to take 5-10 minutes out of one’s day to sit a person down and explain? “Hey, almost everyone I’ve seen with your symptoms are fine - if it doesn’t get better/anything worsens though, you can contact me again, and you will have x, y, z options. And if you can tell me right now that this is hindering you from living your normal day-to-day life, if you fear you may even risk losing your job because of it, then we’ll go through those options right now.” Like, oh no, it’s impractical - how impractical do you think it is to be, say, a sick single mother with shitty insurance, doing everything you’re supposed to do and going to the doctor, but getting absolutely nothing in return - only to one day break down in pain, go to emergency care, and find out, whoops, you WERE that rare patient with THAT rare type of cancer. How inconvenient and impractical won’t that be for those kids who lose a mother they could have kept? Who have to inherit her massive debts - which she would not have had had she been treated in time? How impractical and illogical is that? The amount of people I know who could have been treated before their illnesses or injuries became severe problems… just read some of all these comments. It’s not imaginary. It’s a real issue and some of us actually want to be constructive about it.
My mother has survived a very rare form of Kidney Cancer and in her journey it amazed me how little research and treatments there are for Kidney Cancer for one simple reason....by the time it is usually discovered it is already too late (late stage 4). There needs to be a LOT more research in this arena as underscored by this video
The universe is telling me something or just trying to freak me out. I was in the ER two days ago for disorientation, near syncope, tachycardia, chest pain, and high blood pressure. I have chronic nausea and abdominal pain. All my tests were normal. Referral to a cardiologist, and the ER doc telling me my labs were normal and it's probably my anxiety. Cool cool cool cool, love that.
please keep pushing doctors for help. you deserve it, even if it does turn out to be anxiety (which also deserves to be treated properly!). if you have a fitbit/apple watch etc. maybe see if you can find a pattern between your symptoms. for example, does your heart rate or bp go up when you’re particularly nauseous or in pain? or does the nausea and pain come along as a side effect of the fast heart and high bp? is it worse before or after eating or at certain points in the day? it also may be useful to look into at home testing for postural orthostatic tachycardia syndrome (POTS), which involves testing your heart rate lying down and standing up with certain timing. i’m saying these things as someone who is chronically ill and has experienced a lot of the symptoms you are describing. i have POTS but there are many types of dysautonomia or autonomic dysfunction that can cause things like this. sadly, sometimes we have to be our own investigators sometimes to get ourselves heard. whatever happens i hope you feel better soon or you at least have some sort of answer to what you are experiencing. wishing you all the best 💓
Idk if you'll read this but I am in sort of the same boat as you. 1) do you already have a diagnosis for anxiety? Or more importantly, panic attacks without anxiety? 2) is your chest pain sharp and moving around, or dull and heavy and unmoving? 3) when these episodes end, do you feel better/like nothing happened? Does your blood pressure go back down/pain subsides? 4) do you have a headache with any of this or is it just the heart problems? Hopefully these questions will help your narrow it down.
Really hate just how many horror stories I hear of doctors completely dismissing their patients' concerns only for it to become life-threatening before they decide to care.
Reminds me of my late older sister who went to the ER when she was 48. She was told her pain was a pinched nerve in her neck. That was a Friday. The following Tuesday, she was back in the hospital with congestive heart failure. Thanks to surgery and drugs, she lived to be 74. That early heart attack prompted mom to remember that our late father (who had a massive heart attack at 45) lost his own father to a second heart attack at 54. I had myself checked and got a snotty letter from the cardiologist's office saying there was no reason for my chest pain. I sent an irate letter back to inform them I had not been complaining of chest pain. I mentioned the three known generations of early heart attacks and that I was fat, so I wanted to be checked out. I received a chastened reply that multiple risk factors were certainly an adequate reason to be examined. (BTW, one thing my father, grandfather, older sister, and younger brother --- the ones who had the early heart attacks -- were all smokers. )
I had renal cell carcinoma of the left kidney in 2017. I advocated for myself and pushed the issue of blood in my urine after my PCP said "It's ok and it happens sometimes, it will go away". I was angry but proud of myself for pushing the issue. I had a robotic left partial nephrectomy done the following month of the needle biopsy. In 1992, My mother had a very large benign tumor on her left kidney over 20 years prior. The tumor was removed. In 1998, my father had renal cell carcinoma that spread throughout his body. He lost a large amount of weight and died 6 months later after doctors said it was all in his head. ADVOCATE!
Because I was a bigger woman who wasn’t even 21 at the time, my cancer was dismissed as a pulled muscle due to the intense pain I suffered in one of my arms. The pain came from the bulky tumors in my neck that was also missed because of my size. I was diagnosed with stage 2 Hodgkin’s Lymphoma after a tumor developed in my collarbone that was biopsied after it was brought to my doctor’s attention. They were no longer dismissive and actually apologetic once the diagnosis was confirmed. Oh, and the doctor that dismissed me the entire time up to that point also left and moved to another practice out of state not long after. I’ve been in remission for many years after needing a bone marrow transplant. I’ve learned that as a young woman, I had to advocate for myself and be firm when doctors try to dismiss my concerns. It has been and still is hard to be taken seriously sometimes. I’ve had good and horrible experiences, but I am and always will be thankful for those who listen to me, respect my concerns and opinions, which have given me a more promising quality of life as a result.
So sorry for what you had to go through! I feel like it took me reaching 35+ to get any diagnostic tests whatsoever because they just assume because you are young, you must be fine.
@@Hayley-sl9lm Bro Is this america, I thought your healthcare would be good considering how expensive it is and its payed for out of pocket, man I feel bad for you guys
@@Hayley-sl9lm Yeah, exactly. Oh, you're in pain? Just take some over the counter pain killers and you'll be fine. You're young so you shouldn't be having all these issues. When I tell my history to medical providers, they tend to slowly look at me in disbelief because of my age and because "I don't look sick." Which, I guess is a compliment. Except for when I'm not taken seriously. I hope all is well with you!
never had one of these stories make me cry but i was literally rubbing my hands nervously hoping this had a happy ending ❤ as a woman with arthritis, i can tell you i had to be aggressively assertive to make sure no one told me i wasnt suffering. u really do have to be your own advocate. if it doesnt sound right go get better ears to listen REALLY listen to your problem
It's such a rare case with these videos where there's a very heartwarming ending as opposed to me going, "That's unfortunate but that was real dumb to do" or "That's really unfortunate and sad". Happy she fully recovered.
It took a young man (don't if he was a nurse or orderly) to get me the action I needed at the ER to get my lower legs fixed. Drs at 3 different hospitals (over 2 yrs) kept telling me nothing was wrong with me besides having cellulitis. The cellulitis clinic just gave me antibiotics for a year, which started making my hair fall out. But that young man finally got me the help I needed while I was yet again taken to an ER. I also ended up with a raging infection that made me so cold in july in 30C weather. So, my appreciation to Jamie, that awesome young man who believed there was something truly wrong and got the ER staff jumping.
@lauramartins5953 Cellulitis plus a raging infection. Was so very painful to the point that I wanted my lower legs cut off. They are better now, but there is a lingering effect. I walk more slower with moderate pain. I have fibromyalgia also.
Good for you, Katie!!! Woman are NEVER taken seriously in the medical field, we are consistently dismissed due to things like "periods" and "hormones" coming into play 🙄 I'm so glad that you've built this wonderful foundation. What a wonderful and empowering mark to leave on this world ❤
@xxf yeah, and even doctors who are mindful of medical sexism are still disadvantaged. there's been less research for women's health needs historically and less cumulative knowledge, so they just have less to work with even when they're willing.
@xxf yeah, I've suffered from bad period pain and was bleeding really heavy for about five years starting at 16 yo. The pain was so strong that I couldn't even walk, and painkillers would deal with pain in just about two hours or so. A female gynecologist told me "all women experience period pain, have a baby and it'll get better" when I told her this. And it's a common answer in Russia actually, babies and penises could solve every woman's problems💀
@@trumpatier it's shit for everyone, but it is significantly worse for women right now from sexism that has lasted centuries. we are slowly catching up and becoming more aware, but you can't undo centuries of medical sexism over a few decades, there's still a massive gap in research for women's health. drugs are still tested primarily on men, so women face issues with dosage and side effects, as well as ineffective results. women are more likely to suffer complications in surgery because our bodies aren't as well understood. doctors are significantly more likely to misdiagnosis or ignore women's issues because they either don't understand womens' illnesses, or worse, think we're hypochondriacs for it. a lot of these can and do happen to men, but if you look at statistics, and you look at the root cause, it is significantly more common for women. a google search can tell you this.
It's amazing how many women die from "anxiety". And the really fun thing is, the sicker you get, the more you insist that something is wrong and beg them to please just check, the more "anxious" they say you are.
I'm so glad that things worked out for her, I hope she lives a long life. What irks me though, is when I hear stories like this where someone keeps trying to get answers and is told things like 'it's your period.' People know when their bodies are not acting normal and doctors need to listen better.
This was one of the most intense videos I've ever watched on your channel. So happy about the ending, and with the real patient too! She is amazing for defying all odds. As a fellow zebra, I relate so much, and my zebra-ness hasn't ever been nearly as life-threatening. Huge respect to Katie!!
@piztah That really sucks. I hope you can get a second opinion. Some medications can absolutely lower your seizure threshold, it happened to my ex-partner when they were taking some kind of antipsychotic medication (olanzapine or something like that). It was seriously bad luck. They ended up being diagnosed with epilepsy after that.
Getting diagnosed with something there’s a lot of information on can be confusing and scary so I can’t imagine how she felt to not be able to get any reliable information online about her condition. So glad she beat it and was able to start this foundation to help others like her. Props to you Katie
I can relate, my sister, myself, my mom, and my daughter. It took over 2 years for them to find and explore, with many ER visits only to be sent home. My sister had kidney cancer which was removed, but she passed at 59 after years of complications. I lost part of my liver from lupus liver, which they had never seen, internal bleeding and stones removed. Long story.
As a huge hypochondriac this is one of my worst nightmares, but it's so great to hear that she survived and appears to be doing well. It's really cool seeing her appear at the end of the video too! :-)
My 22 year old son is currently at MD Anderson getting radiation for his Ewing's sarcoma in his mediastinum. Thousands praying for him, doing everything we can to help him, knowing he will die young. Mother's Day, my mom and dad both died of cancer. So tired of cancer.
@@haleyselene Thank you. He's done with chemo and radiation. Still having issues with swallowing and eating, and his last PET scan had a hot spot in his prostate, which will be rechecked in a couple of months. The journey is not over. I just pray God will spare him and give him a long and prosperous life.
This is infuriating and horrific. The same thing happened to a friend of mine. She kept going to doctors due to terrible abdominal pain. She was told there was nothing wrong with her and one doctor prescribed tranquilizers, apparently thinking it was all in her head. Finally, the pain reached an unbearable level and she went to an emergency room and was given an ultrasound. Turns out she had a huge tumor. Luckily it was completely encased so it hadn't spread. It was fully removed and she survived, no thanks to those other doctors. So glad Katie found a solution!
