I was misdiagnosed [CC]

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Jessica Kellgren-Fozard

Jessica Kellgren-Fozard

4 жыл бұрын

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Пікірлер: 3 300
@becca2398
@becca2398 4 жыл бұрын
people need to stop letting doctors graduate without listening skills.
@sophiebach2834
@sophiebach2834 4 жыл бұрын
or compassion
@Nyli.
@Nyli. 4 жыл бұрын
To me here it's about doing your job, this doctor had no right to make a decision in place of the specialists saying that they can't do anything. Let them tell that to her of it's the case. (It's not, but still)
@NoelleMar
@NoelleMar 4 жыл бұрын
I don’t know how it is in the UK, but in the United States getting through med school is insane, and a lot of people who become doctors are just... incredibly competitive and driven. Not that they don’t have other good qualities lol. But those are their main qualities, and they might not be kind or ethical. This is all according to my friend who is a pediatrician. She always says that med school taught her that the best thing you can do to diagnose a patient is listen to them. It’s understand when you’ve worked so hard to become an expert in something to not be listened to, but it is your JOB to listen. She feels like the patients are *always* telling you what they need. If they are the rare pathological liar and hypochondriac, they are ALSO telling you what they need, even if it is more related to mental than physical health. So glad there are at least a few doctors like that in the world... (about to watch the video btw)
@emjenkins464
@emjenkins464 4 жыл бұрын
I was told by two doctors that I was just suffering from school, I only got a referral and possible diagnosis after I immobilized an arm and was in tearjerking pain all day. It was also never actually noted on the system on the system by the physio I saw for knee problems (likely early arthritis) that I had some hypermobile joints. I'm pretty sure it was in my shoulders as well as my ankles; however while my ankles were 'fixed' by the arthritis, my shoulders are getting worse and worse.
@GiFloDotCom
@GiFloDotCom 4 жыл бұрын
Idgi drs spend like 5 years learning how to take histories and they get to graduate and decide that they don’t need to be respectful or actually be a doctor 🙂🙃🙃
@unicorn1655
@unicorn1655 4 жыл бұрын
Okay when people are amazed that their doctor actually gives a shit about them, something's really wrong
@Mary-op8hi
@Mary-op8hi 4 жыл бұрын
THANK YOU
@gabeangel8104
@gabeangel8104 4 жыл бұрын
Unfortunately, a lot of doctors seem to be over stressed, over worked, working within a system that doesn’t allow the time and/or flexibility to give enough attention or just plain have compassion fatigue and it does end up coming across as not giving a crap about us. I have a great GP who is already past the age when he should have retired, and I’m terrified of him eventually retiring because my experience of the NHS has been one of bad experiences drastically outweigh the good. I could count the people who seemed like they actually cared much on one hand (and I have probably seen hundreds of people in my life overall). I recognise that some of them probably did care but for whatever reason it sure didn’t show in their behaviour.
@sarablackwolfdancer9359
@sarablackwolfdancer9359 4 жыл бұрын
Unfortunately that's very common for people with "out of the common run" diseases.
@emlee1176
@emlee1176 4 жыл бұрын
I actually expect new doctors to be trash🤷‍♀️. I’ve had so many just awful, lazy doctors to trust any of them.
@sarablackwolfdancer9359
@sarablackwolfdancer9359 4 жыл бұрын
@@emlee1176 Every time I go see a new doctor, I have the same thought. "This is probably a waste of my time, and I don't expect anything from this but another dismissal." Occasionally I'm surprised (shocked?) in a pleasant way. Most of the time I just want to get up and leave the appointment before it's over. I know more about my disease than most of the specialists I go see.
@cinnalosasha
@cinnalosasha 4 жыл бұрын
Was told by male doctor “Your fatigue/symptoms are because you’re a mom of 2 young children - it’s normal” Female doctor: uhh.. that’s not normal - let’s run some extra tests... I have Lupus and Sjögrens disease.
@virrig6923
@virrig6923 4 жыл бұрын
i think you mean Sjögren's ;)
@cinnalosasha
@cinnalosasha 4 жыл бұрын
virrig I do! Thanks! :) will edit
@stephaniehowe0973
@stephaniehowe0973 4 жыл бұрын
O.o
@annmarieknapp
@annmarieknapp 4 жыл бұрын
OmG. Horrified that you were misdiagnosed. Sadly, typical that women are treated as if it's all in their head.
@Chelsea-ju1ex
@Chelsea-ju1ex 4 жыл бұрын
My fatigue was from very low vitamin D :( I’m sorry that yours is from something much worse 🙁🙁
@rosimoone5068
@rosimoone5068 4 жыл бұрын
me: *lists my symptoms* doctors: have you tried ibuprofen?
@31michelle64
@31michelle64 4 жыл бұрын
YES!!! Or maybe if you exercise? So aggravating!!!
@stephaniefriedersdorff8948
@stephaniefriedersdorff8948 4 жыл бұрын
That's what a doctor said to my child once after weeks of joint pain. Ugh!
@TheAraberpinto
@TheAraberpinto 4 жыл бұрын
Rosi Moone I was in surgery a few days ago and said that morphine does not act like it should with me. Confused looks then on surgery day got kept under for an extra hour because when I woke up despite morphine I screamed with pain. Hours later and much morphine later still no effect. 5 pain killing options later the pain was getting better but it had exhausted me so much I was dizzy and dehydrated and could not keep down water. I remember saying before surgery and when I had enough energy mid pain the morphine is useless with me if given the dose allowed.
@maggiemclouth5478
@maggiemclouth5478 4 жыл бұрын
LITERALLY went to the ER with horrible back spasms, the doctor didn’t even touch me, told me to take ibuprofen, and to stop playing sports (which I didn’t play). Turns out that back spasm was from a two inch long TUMOR on my L2 vertebra. But yeah, ibuprofen will fix that RIGHT up...
@Poppy-
@Poppy- 4 жыл бұрын
@@maggiemclouth5478 jeezus!Hope you'll get all the GOOD cares really soon. It's not half as bad for me, but the ER Dr suspected kidney stones? I said: no! I had that once and it's not it. Him: are you sure it's pelvic pain? Me: 🙄. Turns out I had an ovarian cyst that bursted and an new uterine tumor 👏👏👏
@silverbroom02
@silverbroom02 4 жыл бұрын
Omg I hate when doctors refuse to help because there’s no cure. Like... ever hear of symptom management???
@AdorkableArtist92
@AdorkableArtist92 4 жыл бұрын
I got kicked out of physical therapy for "not improving fast enough." I have spina bifida. I am NEVER going to walk totally unassisted or have totally linear progress. That's not the goal. Increasing strength, flexibility, and stamina was the goal. I was still going to have bad days where it looked like I hadn't done my exercises all week and good days where I exceeded expectations. But my PT didn't understand that.
@niranjana9060
@niranjana9060 4 жыл бұрын
@@AdorkableArtist92 I'm horrified that you had to go through this situation ! Before discovering Jessica's channel I had no idea how the system could be so messed up. Sending you love and energy. ☀🌈
@Daliachan
@Daliachan 4 жыл бұрын
Where I live, it's possible to be denied aid to get therapy, if the government feels that it would not make you able to work again. So basically you can be denied therapy if they think you are too sick to get better in three years. Because apparently quality of life is only for healthy people.
@shalacarter9330
@shalacarter9330 4 жыл бұрын
@@AdorkableArtist92 are you in America? I am in physical therapy and I was referred by my pain management doctor. He sent them a prescription for me. I love my physical therapists! They are the first ones who actually care about me. As for the physical therapist who won't keep working with you because your spina bifida will never be cured? They suck! Can you find a new office?
@BVenge-pe4wi
@BVenge-pe4wi 4 жыл бұрын
ADAB 🤣
@modernchan1106
@modernchan1106 4 жыл бұрын
If a doctor says no after you specifically asked them to run a test or refer you, ask them to document in the papers specifically that they refused it to you.
@ethereallioness
@ethereallioness 4 жыл бұрын
have you done that? i'm just wondering how they responded.
@modernchan1106
@modernchan1106 4 жыл бұрын
@@ethereallioness Not me, but my mother did. She was eventually able to get them to run the tests for her after she asked them to document that they refused to run them for her.
@lindatannock
@lindatannock 4 жыл бұрын
I've had tests and referrals refused too. It's so frustrating (and upsetting , as the doc is basically saying "i don't believe you")
@thedreamcatch3
@thedreamcatch3 4 жыл бұрын
You can do this, if they start to argue, say that 'I insist'. If nothing comes from it, that's fine, but if in the future you have to go back to the Dr for the same issue, there's a record of it
@cromanko
@cromanko 4 жыл бұрын
It’s worked for me!!!
@Artscapades
@Artscapades 4 жыл бұрын
"I want to receive adequate medical care for symptoms I have and I want to know what's wrong with me so I have the tools to manage it" Big mood.
@fionafiona1146
@fionafiona1146 4 жыл бұрын
Doctors take turns to deny my headaches fit their specialisation (hydration/nutrition, bloodwork, sports regime, and psychological evaluation beyond whatever neurologist ruled out).
@ashtaylor4107
@ashtaylor4107 4 жыл бұрын
The biggest mood. I'm starting to feel like I'll never get those things sadly. I'm getting so tired and progressively sicker, that I may just give up eventually. Haven't given up yet though!
@fionafiona1146
@fionafiona1146 4 жыл бұрын
@@ashtaylor4107 Have you looked into intercontinental travel cheaper than you usual medical coverage?
@milalka
@milalka 3 жыл бұрын
Had an excellent and well-known cardiologist say they wouldn't bother diagnosing me despite my symptoms of POTS as it wouldn't change my current treatment. Like fuck there are other bloody reasons to diagnose but ok..time for a 4th cardiologist.
@the61stbookworm78
@the61stbookworm78 4 жыл бұрын
I can't go trampolining because of my scoliosis, it's the most miserable thing There is a parallel world where Jessica and I are trampolining together and it's beautiful
@AndWhatIsThisNow
@AndWhatIsThisNow 4 жыл бұрын
British doctors: No, you can't have a referral. US doctors: You can have a referral, but you can't afford to see the specialist, anyway.
@faeflitt
@faeflitt 4 жыл бұрын
AndWhatIsThisNow Also US Doctors: Sure you can have the referral. We are booked so far out in genetics that we will even give you two years to save up for it! For real. I am being seen finally this Monday for an appointment I have had scheduled for TWO YEARS to be evaluated for EDS. At this point -I- know, my PCP knows, my chiropractor knows... everyone but the freaking insurance company has figured this out (and fortunately have mostly been treating me accordingly when they can) I feel like I should wear a sparkly paper cone hat to my appointment and pass out some party horns... just because they are late to the party doesn’t mean they weren’t invited.
@dexa6623
@dexa6623 4 жыл бұрын
Australian doctors: No. You can't have a referral. We don't have one of those in OUR clinic, so it doesn't exist.
@mxpronounced3224
@mxpronounced3224 4 жыл бұрын
Canadian doctors: you can have a referral, but your specialist is 5 hours away and you'll have to wait 6 months
@kurehanokimonoyume4739
@kurehanokimonoyume4739 4 жыл бұрын
Poland doctors: Referral? Well, whatever, you'll have to wait for 2 years for the first available appointment anyway. Unless you'll go private. No joking, my dad got signed in for a major spinal surgery for 2021. He'll go from full mobility to chairbound at this rate.
@shayelea
@shayelea 4 жыл бұрын
Or: you can have a referral, but no one knows how to diagnose a disease that affects more than one system so it won’t do you any good anyway. I was essentially told by both a rheumatologist (who don’t really treat EDS as it’s not a rheumatic disease - but YOU’D THINK would at least notice joint hypermobility) and a neurologist, “there’s nothing wrong with you, get out of my office.”
@lorenwolfe8067
@lorenwolfe8067 4 жыл бұрын
“The upswing of every story is ‘and then I met my wife!’” Why am I crying in the club rn
@katherinemayer3172
@katherinemayer3172 3 жыл бұрын
Wait is that a song reference-
@georgerobins4110
@georgerobins4110 4 жыл бұрын
“Hypochondria is not the same as faking it” I... honestly really needed to hear that. I have pretty bad hypochondria sometimes (list of diseases/ things I thought I had but do not: heart attack, stroke, mouth cancer, throat cancer, lung cancer, skin cancer, lupus, Lyme disease, malaria... I’m pretty sure there’s more that I’m forgetting, it’s a long list) and it’s a shitty thing to go through. Every single time I think “it’s fine, you’re just freaking out over nothing, you’re fine” but my hypochondriac brain is just like: “BUT WHAT IF THIS IS THE ONE TIME THAT ITS ACTUALLY A SERIOUS PROBLEM AND YOU DIE?!?!?!” and it’s very frightening and frustrating. But people joke about it because they forget that being a hypochondriac causes me a lot of stress. I don’t need to be teased or mocked, I need to be reassured. Idk what the point of this rant is, but thank you for that little clarification because it honestly means a lot to me.
@Gig4Ever
@Gig4Ever 4 жыл бұрын
I don't know if I definitely have hypochondriasis, but I can definitely relate to what you said. I don't want to spend so much money going to the doctor to see if the pain in my side is a UTI or just my body having pain, but I don't want to be the person that dies because they didn't get help when they needed to. God bless you George.
@aw7145
@aw7145 4 жыл бұрын
I relate so much to this! I've had hypochondria/medical anxiety for most of my life (it's hard as a 7 year old to be taken seriously when you truly believe you have cancer, so my parents liked to tell me to "just calm down, you're fine"). I also, annoyingly, have a massive fear of doctors and medical facilities (I've had panic attacks most every time I go to my PCP and my OBGYN) and this seems to make everything worse with my interactions with doctors - they see me as hysterical and don't take me seriously because I'm too afraid to be there. Also it has been difficult for my therapists to even recognize that I have medical anxiety, many of them thought that I've been through just think I'm depressed and think that my hypochondria is a cry for help, which is really upsetting and difficult to deal with
@mireia9448
@mireia9448 4 жыл бұрын
Alyssa Wagner Oh God! I could’ve written just that. My experience has been so similar... and only now I am starting to get somewhere. I cannot imagine a life not being scared of every small ache and pain.
@Silkenray
@Silkenray 3 жыл бұрын
I have medical anxiety as part of my OCD, and have become pretty great at weighing up whether or not something is actually serious so I can triage myself and only go to the doctor when it’s actually something that requires their intervention. Unfortunately, going to appointments or noticing something weird about my body still makes me unbearably anxious, even when I know I’m actually fine. It’s a giant mindfuck to simultaneously hold in your head that what’s going on definitely isn’t serious, along with unbearable anxiety about it anyway. OCD is the worst.
@lizziethewitch7770
@lizziethewitch7770 3 жыл бұрын
I dont have hyperchodria but I have anxiety (it effects many things like socializing and situations but those arent exactly relevant) and I'm always convinced something is horribly wrong. Whenever I watch medical programs you can be sure I've convinced myself I have at least 3 things that are life threatening, and my throat starts to feel like its closing up, and dry and swollen and I panic. It's so frustrating because I'm freaking out and my mum (who is a great mum but doesnt understand my fear) is always like "just go to sleep you're fine. I often pull all nighters cuz I'm too afraid to sleep in case I stop breathing so I dont know your struggle the same, but I know the utter panic feeling. Mine's quite odd because physically I feel panicked but I also have derealisation which makes me confused about what I can feel and what's real. It feels dreamlike and therefore even more freaking confusing jdkwksksla. It also doesn't help that I get abnormally bad period cramps that convince me I have some kind of cancer...
@lorilater8236
@lorilater8236 4 жыл бұрын
Me: hey I get this extreme pain that comes in spasms throughout the day Doctor, Mother, everyone else: Sounds like you want attention
@cottage-core_
@cottage-core_ 4 жыл бұрын
"I'm having extreme muscle pains that are lasting longer each time" "Ah. You seem stressed." No shit.
@xotbirdox
@xotbirdox 4 жыл бұрын
Me: "I'm having excruciating period pain and bleeding after I masturbate." My gynae: "Are you sure you're not just anxious?" 🙃 Am now diagnosed with Endometriosis
@pleaseenteraname7153
@pleaseenteraname7153 3 жыл бұрын
One time I slightly overdosed on my Lexapro on purpose and for months after I would get stomach pains and mysterious stabbing pains in my left side that would paralyze me bc it was so painful and I told my mom about it and she brushed it off
@orchdork775
@orchdork775 2 жыл бұрын
@@pleaseenteraname7153 Sounds like it could be a stomach ulcer or gastritis. If you still experience this pain, you can try prilosec or other over the counter medications for ulcers and heartburn and see if that helps. Ideally, it would be best to see a doctor, but I know that's hard if your parents don't believe you. Some other symptoms of gastritis and stomach ulcers are if you get nauseated in the morning when you have an empty stomach, if it feels like your stomach is burning (like you drank acid), and if the pain lessens when you eat.
@luckysweetheartvintage476
@luckysweetheartvintage476 4 жыл бұрын
Telling people that they’re faking it is literally medicines biggest copout
@watson483
@watson483 4 жыл бұрын
Mum called me a drama queen and told to suck it up. I was constantly spraining things, to the point that when I was 10, I knew how to bandage and strap my ankles. I was still really active, hence the constant injuries, and I'm lucky my eds and other things didn't get really bad til a few years ago.
@Aelffwynn
@Aelffwynn 4 жыл бұрын
I once had a doctor tell me I wasn't trying hard enough and that I was taking the easy way out by sitting at home all day. I was fourteen. Fuck that guy.
@Momoxdear
@Momoxdear 4 жыл бұрын
That and being diagnosed with mental illness. Once you have a MI on your chart, all your problems are psychosomatic and will go away once you stop being so negative. Doctors. need. to. be. stopped.
@HeyJudie
@HeyJudie 4 жыл бұрын
@@watson483 SAME. Same same same same same. The third time I called my mom to pick me up because i was sure I broke my finger, she stopped believing me. Every time she brought me to the Dr, it wasn't broken but sprained, so she eventually stopped taking me. The drs who thought I didn't even have a sprain said I was having growing pains. Then a couple years ago I was in so much pain all over I could hardly move. Eventually diagnosed with hEDS.
@NM-vp4ql
@NM-vp4ql 4 жыл бұрын
I had neurologist who put me on an antidepressant to fix my migraines (sent me for no MRIs, no blood tests, nothing) then when I told him it was giving me horrific side effects like anxiety attacks and gi distress and brain fog, he told me I was lying and he didn't know what I wanted from him..... Turns out now (almost a year later!) That my body can't handle any estrogen (BC or what's produced in my body) and I have endometriosis which caused everything wrong in my life...but yeah I was faking those years of constant cluster, tension, and pressure migraines which made me lose weeks and weeks of pay because they happened almost every day.
@katherineschroeder7226
@katherineschroeder7226 4 жыл бұрын
"EDS cant be cured" yeah buddy, neither can rheumatoid arthritis and in this household, we do not devalue anyone's pain!
@jenroses
@jenroses 4 жыл бұрын
my rheumy was so weirdly relieved when I went seropositive for RA because it was something he COULD treat. The EDS? Not so much.
@Raincloudprism
@Raincloudprism 4 жыл бұрын
Ugh I have juvinile arthritis (why is everything idopathic lol)
@terrytheboxwithlimbs
@terrytheboxwithlimbs 4 жыл бұрын
Cassandra Music I have JA too (like EVERY single joint in my body is affected), it fucking sucks mate.
@Correctrix
@Correctrix 4 жыл бұрын
The loopy thing is that EDS _is_ treatable. Specific physiotherapy, saline for POTS, braces/splints...
@TheIndigoSystem
@TheIndigoSystem 4 жыл бұрын
Correctrix EDS has no cure. I have had physio. It did nothing.
@ivyblack2209
@ivyblack2209 3 жыл бұрын
"There's absolutely no evidence of this medication worsening depression or hormonal problems, maybe there's something else bothering you?" - 2 male doctors in a row. "Yes this medication is known to cause depressive thoughts, let's switch you to a different kind." - The one female doctor who actually listened to me without being patronising.
@ArtBySoup
@ArtBySoup 4 жыл бұрын
I just had a doctor ask me “why did you come here? There’s no cure” when I first went to the rheumatologist for my Ehlers Danlos
@rnshi
@rnshi 4 жыл бұрын
Same just happened to me. He told me it was anxiety and I was looking for a magic pill for a genetic issue that can't be fixed. Oh OK, I have pictures of rashes, joint swelling, I have positive tests for scoliosis, shallow hips, torn labrum , etc etc and it's just anxiety? Know what makes me anxious? Falling apart while having shit doctors.
@PixelatedFaerie
@PixelatedFaerie 3 жыл бұрын
When I was diagnosed, my rheumatologist told me there's no cure and you're going to have pain for the rest of your life. Then sent me to physical therapy which just racked up medical bills and I'd have to do for life for it to help. It's a bunch of ableist bullshit the way we are treated.
@Boo-YouDoYou
@Boo-YouDoYou 3 жыл бұрын
Yep same.... mood
@mjaynes288
@mjaynes288 Жыл бұрын
I was told rheumatologists only treat autoimmune disorders and dismissed.
@AndiPandiBee
@AndiPandiBee 4 жыл бұрын
I just got told "it's just because you're a woman" "young women often have a bad time with periods"... This was in relation to extreme pain in my leg... Because I mentioned I flared whenever I had a period... - I was told as a kid I had malformed hips and knees. Yet as a teen it was egnored for womenly stuff... Turns out I have Multiple Sclerosis. Who could have guessed.
@Emilyweasel2023
@Emilyweasel2023 4 жыл бұрын
Ellie Smithy It sucks that every young woman I talk to with a chronic health condition was dismissed as it’s because your female. I read a study once where it stated women are more likely to die of a heart attack because medical professionals rate men’s pain as more severe and they get medical attention quicker.
@happythekatt8419
@happythekatt8419 4 жыл бұрын
Emily Kinsella Which is hilariously sad- because woman typically have a higher pain tolerance.
@thatjillgirl
@thatjillgirl 4 жыл бұрын
@@Emilyweasel2023 It's doubly strange because....it probably *is* related to being female, in that it's more likely that it's an actual chronic health condition and not just a weird but benign thing (females are more likely to have autoimmune disorders, for instance). Like, they should be making the connection of "You're complaining of certain symptoms, and on top of that, you're a woman. There might actually be something really wrong here." But instead, they just go, "I don't know, women are weird, I guess," and just brush it off like it's just a fact of life that women suffer and you're just going to have to accept it. As a medical professional myself, I find it truly confusing.
@woahjosiii12
@woahjosiii12 4 жыл бұрын
@@Emilyweasel2023 @Happythekatt Sorry, but that's not the case. Women get more often misdiagnosed because of female specific, less known heart attack symptoms. But women aren't less pain sensitive then men. Women report the same pain stimuli to be more painful than men. There are sociocultural, ethnical differences in pain responses, too. www.npr.org/sections/health-shots/2019/08/26/741926952/women-may-be-more-adept-than-men-at-discerning-pain?t=1574456438042
@Emilyweasel2023
@Emilyweasel2023 4 жыл бұрын
J05III woah!! Perhaps I’m thinking of another study. I know it was something to do with pain in A&E/ED and the speed of people getting seen perhaps. I’ll try and find the link somewhere for the study.I have read an awful lot of medical text over the last year so they could be getting mixed up in my head.
@Carlyfraser
@Carlyfraser 4 жыл бұрын
I hate being misdiagnosed, it’s so confusing...
@happythekatt8419
@happythekatt8419 4 жыл бұрын
For real
@migfy
@migfy 4 жыл бұрын
a haPpy littlE acCident
@clwilliams9276
@clwilliams9276 4 жыл бұрын
I've been misdiagnosed so many times, its nowhere near funny.
@yeracontra
@yeracontra 3 жыл бұрын
“None of the staff looked like they had been working over the legal number of hours without break” lmao made me laugh. Sadly that is my life 😂
@FeralLeatherCraft
@FeralLeatherCraft 3 жыл бұрын
I don't know if you did it on purpose but the camera changes are almost perfectly timed with the length of my attention span and my ADHD brain thanks you for making me feel normal enough to focus on something this long
@THEEINFEKTED
@THEEINFEKTED Жыл бұрын
Yay! I thought it was just me and my adhd that effected.
@aslan.c0m
@aslan.c0m 4 жыл бұрын
“A little bit floppy” - *Jessica 2019*
@NorthernHedgeWitch
@NorthernHedgeWitch 4 жыл бұрын
“You have something, but I don’t know yet” has been my diagnosis.
@grayonthewater
@grayonthewater 4 жыл бұрын
Amethyst Moon I mean, they have to start somewhere right?
@NorthernHedgeWitch
@NorthernHedgeWitch 4 жыл бұрын
Gray Glider Girl unfortunately my starting somewhere started when I was 9 years old. I’m in my 30s.
@allierp77
@allierp77 4 жыл бұрын
Yup me too
@ME-pt7uh
@ME-pt7uh 4 жыл бұрын
Idk which I hated worse, "idk yet," or "you have X, sucks to be you. "
@clevertiger4223
@clevertiger4223 4 жыл бұрын
@Emily Schulte-Slifkin Have you been checked for endometriosis?
@eloujtimereaver4504
@eloujtimereaver4504 4 жыл бұрын
Chocolate button diagnosis sounds adorable, and sad.
@geeksdo1tbetter
@geeksdo1tbetter 24 күн бұрын
This.
@lasagnekiller
@lasagnekiller 3 жыл бұрын
This makes me furious and scared because you went deaf, blind in one eye and had paralysed limbs, and doctor's still dismissed the potential cause of your symptoms and made very little effort in figuring them out. I mean, do these things no longer require urgent care and medical attention?
@breannaalger9585
@breannaalger9585 4 жыл бұрын
The medical world in general sucks when it comes to disabilities. That’s at least my opinion.
@bipolartorecovery1485
@bipolartorecovery1485 4 жыл бұрын
Agreed
@leo_warren
@leo_warren 4 жыл бұрын
Definitely NHS is great for the average person and emergency care but chronic illness well good luck. I am autoimmune, it took the Dr 2 years to diagnose and a further year to refer me to a specialist who could prescribe what I need, all because I have a condition which almost never occurs in children.
@annieinwonderland
@annieinwonderland 3 жыл бұрын
In Australia we are getting so much better.
@elleciel2358
@elleciel2358 4 жыл бұрын
"You're faking it" Yeah...because faking depression is s funny
@hearts_ease
@hearts_ease 4 жыл бұрын
ha...ha
@umbrequil
@umbrequil 4 жыл бұрын
"I want to know what I have so I can have the tools to manage it" ... THIS IS WHAT I NEED TO SAY FROM NOW ON AT EVERY DOCTORS APPOINTMENT!!! I've had multiple doctors look at me and my symptoms, then dismiss me as 'faking' or 'lying' about pain and/or symptoms I'm having because they didn't want to figure out what was wrong with me
@ryttu3k
@ryttu3k 4 жыл бұрын
When you said "hands up if you saw that coming!", I raised my hand so fast I subluxed my shoulder. EDS is super fun!
@kittycatcaoimhe
@kittycatcaoimhe 7 ай бұрын
See I woke up this morning with both shoulders out, so I instead raised my hand at the elbow. Now my wrist is all funny on one side.
@spooniejusticewarrior
@spooniejusticewarrior 4 жыл бұрын
"You have something, I just don't know what yet." Fibromyalgia has entered the chat
@hannahkistler5322
@hannahkistler5322 4 жыл бұрын
That was my original diagnosis. Five years later and I finally have a great medical team and a hEDS diagnosis :)
@aelysdromard516
@aelysdromard516 4 жыл бұрын
So true 😂 😂
@pishwa
@pishwa 4 жыл бұрын
Just @ me next time 😂
@marijaalisa
@marijaalisa 4 жыл бұрын
My doctor diagnosed me with fibromyalgia, then lyme disease and now she thinks i have problems because of gluten and lactose
@fashiharz8584
@fashiharz8584 4 жыл бұрын
@@hannahkistler5322 how to get a great medical team? I'm curious.
@mychristmasemporium5927
@mychristmasemporium5927 4 жыл бұрын
I was misdiagnosed! The doctors thought it was stress/allergies turns out it was my kidneys failing! 🤦🏻‍♀️😩
@maevepreston6040
@maevepreston6040 4 жыл бұрын
the first thing they go to is anxiety, and it’s so frustrating bc you don’t get the help you need
@DieAlteistwiederda
@DieAlteistwiederda 4 жыл бұрын
My "panic attack" was actually a highly inflamed muscle in my shoulder. It's hard to find doctors that actually listen to you.
@mychristmasemporium5927
@mychristmasemporium5927 4 жыл бұрын
hailey a they thought because I was 26 and going in with lots of different symptoms they thought I was just being melodramatic! I ended up in A and E I was so ill I couldn’t stand up! I’m lucky to be here but after my kidney transplant my life completely changed and I now have a beautiful daughter! After years of struggling with my health I’m in a good place! So perseverance does help!
@maevepreston6040
@maevepreston6040 4 жыл бұрын
Katrina Vernon i’m really happy you’ve been helped into a good place!!
@mychristmasemporium5927
@mychristmasemporium5927 4 жыл бұрын
Also after surgery I had I kept say my arm was numb from a neck line being moved and they said it’s normal turns out I had a clots in my arm from my elbow up to my colour bone which could have killed me if it had broken off! That was fun!
@nikkidimick947
@nikkidimick947 4 жыл бұрын
It took years for me to find a doctor that would listen to me. No, this isn't all in my head. My skin feels bruised, I'm exhausted constantly, I'm always nauseous, with a plethora of other symptoms.... I was told so so many times that I was faking the pain or it was all in my head. I finally, after 20 years, just a few months ago found an AMAZING doctor that sat with me for over an hour doing as gentle of an examination all while listening to me tell my story. He put his hands on either side of my face (that was swollen and tender at the time) and looked me in the eyes and said "I believe you. I watched you walk in here. Your gait is off, you're having difficulty with mobility, when I touch you, even slightly, you wince. It is NOT in your head. What you're feeling is real and we are going to help get you better by working together." And then I proceeded to sob uncontrollably for twenty minutes while he patiently sat with me and explained that Fibromyalgia can be debilitating, there is no reason we can't figure out something to lessen the symptoms and make me feel better and feel less pain. I was just so frickin happy someone FINALLY heard me. I'm so sorry anyone else has to go through shit with the healthcare system in any country (I'm in the US) finding a doctor that really listens and hears you and wants to help you is difficult and I truly hope everyone gets the help they so badly need.
@orchdork775
@orchdork775 2 жыл бұрын
Damn, reading this really made me tear up. Glad you finally a good doctor who could help you.
@SatumainenOlento
@SatumainenOlento Жыл бұрын
I also teared up so badly, because this is so lovely story (not the 20 first years, but 20 years afterwards). What a lovely experience to be finally heard 💗
@VeryGoodDad
@VeryGoodDad Жыл бұрын
I'm glad you got the help you needed ❤️
@emmiwarford2096
@emmiwarford2096 Жыл бұрын
Damn, this made me cry. Not tear up, straight up CRY. I’m currently jumping from doctor to doctor, DESPERATE to find one that will actually listen to me, believe me, and care. None of them have even bothered with any kind of physical exam, and just treat me like I’m overly anxious. I’m so happy for you! That sounds like an amazing doctor.
@isabellegrant3925
@isabellegrant3925 4 жыл бұрын
every time Jessica mentions Claudia i LoSe My BrEaTh WhEnEvEr i SeE yOu
@telescopedreams
@telescopedreams 4 жыл бұрын
I love how all of us who have been ill/disabled since childhood heard "there was a lot of crying" and immediately went "oh yeah same haha-"
@threadsattached6105
@threadsattached6105 4 жыл бұрын
Telling people they are faking it makes no sense, like your not a child lying about being sick to your mum trying to get a day off school
@pythonissamxedits
@pythonissamxedits 4 жыл бұрын
And if they are faking it, they still need help because that's not normal.
@franksonatra
@franksonatra 4 жыл бұрын
Lol doctors do that to me all the time cause I'm "too young" to have a chronic illness. Doctors hate it when people can't be healed in a few days or months, much less at all. They also hate it if we research our own (possible) illnesses cause they hate us knowing more than them. And then some. Medical abuse is fun.
@eddierich6179
@eddierich6179 4 жыл бұрын
Sometimes healthy kids will fake sick when they have anxiety about school. Like if they are being bullied right so,etching. So even faking sick means something’s up!
@whychoooseausername4763
@whychoooseausername4763 4 жыл бұрын
@@franksonatra Oh gosh, I don't know whether you're 12 or 25, I'm so incredibly sorry you're going through a really rough time. As a med student doing rotation in a teaching hospital, I'd like to offer several opinions : 1) I have more time than most doctors to talk and listen to my patients, and that helps - but it should be a two way conversation where a patient educates me about their symptoms and experience while I educate them on the mechanisms and management of their disease. I can afford to spend more time at the hospital rather than at my second job or attending classes than most, but it's still difficult to manage and a sometimes expensive investment. 2) I understand doctors who have spent about 15 years training feeling frustrated about not being able to heal their patients. I lost a patient recently, and had to hide in the toilet to desperately cry. 3) I applaud you for engaging in this discussion. (PS: 4) some doctors are dicks and they don't deserve you time.)
@lindenpeters2601
@lindenpeters2601 4 жыл бұрын
There are accounts of people who have faked illnesses to get free benefits and procedures from nationalized healthcare. There was an influencer, recently, who faked depression to get a nose job. So shameful, because it draws into question all the people who actually are ill and need help!
@biancawiller4989
@biancawiller4989 4 жыл бұрын
My current diagnosis: You have something I just don't know what yet, you'll probably be fine. Bonus from a G.P. It's probably just a physical side effects of your anxiety. Saw a different G.P. Turns out my ribs are getting inflamed and I'm gluten intolerant.
@octoberna7949
@octoberna7949 3 жыл бұрын
I keep getting "there's no reason for this to happen", followed up by no tests, or one blood test, then told it's all in my head. At the moment I'm having issues with pins and needles in my hands. I think I probably just pulled a nerve or something (aka I think it's just a minor temporary thing, not worried) but doctors keep acting like I've told them I think I'm dying. "There's no reason for that! Just relax!!" Like, I am relaxed, chill-
@octoberna7949
@octoberna7949 2 жыл бұрын
Update: Hands were inflammed and bones were thinning. Have been told not to worry about it.
@rohankishibe2985
@rohankishibe2985 Жыл бұрын
@@octoberna7949 what the fuck??? How is that something not to be worried about?
@octoberna7949
@octoberna7949 Жыл бұрын
@@rohankishibe2985 Ha, it gets worse. Started vomiting for 12 hours a day last year, uncontrollably. My heary reaches 190 bpm on a bad day. Been told I've just got an eating disorder then was prescribed laxatives!
@dragonflies6793
@dragonflies6793 Жыл бұрын
@@octoberna7949 Wow. I'm so sorry about that. I hope you're able to find a doctor who listens to you and treats you well. Good luck with your health
@Captain_Pink
@Captain_Pink Жыл бұрын
@@octoberna7949 Jesus, did they ever figure out what was wrong?
@allergictoalliteration6033
@allergictoalliteration6033 4 жыл бұрын
"What's the point? There's no cure for EDS." "Uhh I'm no doctor, but isn't it your job to help me be healthier regardless? Doesn't healthy living encompass _more_ than just freedom from illness? Are we really arguing semantics from your first-year-of-med-school bioethics class right now?"
@shaunshroom4116
@shaunshroom4116 4 жыл бұрын
as for the hippocratic oath, yknow, the thing that doctors take to become doctors after their education - they have to do everything in their power to help. Even if there's no cure. There's no cure for anyone on the autism spectrum, but there are still therapies and other things to calm the symptoms. There's no cure for a lotta things, but therapy and stuff helps tons!!!
@tealkerberus748
@tealkerberus748 4 жыл бұрын
Life is an incurable disease which is invariably lethal.
@JanCarol11
@JanCarol11 4 жыл бұрын
Doctors don't know enough about food and nutrition, for example.
@hajrapanhwar6027
@hajrapanhwar6027 4 жыл бұрын
Funnily enough, I am the ONE person in my entire friend group who REFUSES to ever go into a medical profession (they are all studying to be nurses and doctors and dieticians) and somehow I'm the only one who has taken the Medical Ethics class among us. (Proud philosophy major here, ty)
@xotbirdox
@xotbirdox 4 жыл бұрын
@@shaunshroom4116 Hey, absolutely agree with you, however I'd like to point out that the main "therapy" for autism (ABA) is actually abuse. Completely agree with occupational therapy, speech therapy, etc though. Those can be incredibly helpful.
@danielleswartz1317
@danielleswartz1317 4 жыл бұрын
So my 10 year old daughter is home sick and this made her laugh and then her jaw partially dislocated. She also has EDS.
@michimelody4036
@michimelody4036 4 жыл бұрын
Oh no!! Yeah that is the worst feeling. I hope she gets it back in. :( Stay strong little zebra
@ellespoonies
@ellespoonies 4 жыл бұрын
aw hopefully it wasn’t too painful popping it back in, what a strong kid you have 💕
@squeeerle
@squeeerle 4 жыл бұрын
I hope when you read this she is feeling better!
@jenroses
@jenroses 4 жыл бұрын
this is the most eds thing to ever eds.
@KakeKittyStyle
@KakeKittyStyle 4 жыл бұрын
I hate it when that happens. Jaw dislocations are the worst.
@cjntaylor
@cjntaylor 4 жыл бұрын
As someone who currently has a “mystery illness” this hits really close to home. I’ve more or less given up on finding out what I actually have but it would be so nice to have something concrete to act on. Thanks so much for making this, it really helps to have some hope still, and boy howdy do I know that talking about this kind of thing is hard. Stay strong!
@sbjade9812
@sbjade9812 4 жыл бұрын
I’m going thru the same,
@funkway
@funkway 4 жыл бұрын
in the same boat! hoping for answers, but I'm also cool with not spending all my money on drs who shrug and dismiss.
@breakfastbear239
@breakfastbear239 4 жыл бұрын
Please don't give up! I know it's discouraging but you have to keep going. I had Lyme Disease (a tick borne illness) for over a year when i was around 13 before they caught it. They told me that it could have caused me to go blind if my mother and I hadn't kept going to doctors and demanding that I'm not making it up for attention. I wish you luck and health!
@sbjade9812
@sbjade9812 3 жыл бұрын
I have found my diagnosis! Well one of them. Please don’t give up. Go to as many doctors are you can afford. Bang on the doors of every doctors office you can. DO NOT STOP. Your body and your life are worth so much more than that. If I would have given up, I would have died 2 years ago, only at the age of 18. Don’t let them tell you it’s nothing, or that you’re faking or that it’s impossible to find out what it is. Keep going, don’t give up 💗
@jamjamb123
@jamjamb123 3 жыл бұрын
How are you doing now
@NicoleAcedIt
@NicoleAcedIt 4 жыл бұрын
Being told you're faking is the worst, especially when doctors don't listen. When I was 18 and a senior in high school, my lifelong history of stomach problems came to a head, and I missed the last two months of school. My dad was in the US Air Force, so I went to a military hospital. They didn't have enough doctors, so I was assigned to a physician's assistant instead (this was the same reason that my brother and I were kept in pediatrics until he was 21, which-side note-it's very amusing watching a 6'4" man try to fit on an exam table built for 6 year olds). After running only a few tests, the PA couldn't find anything obviously wrong with me and told me that my stomach problems weren't real and that they were a reaction to being bullied. I was not being bullied. In fact, I had texts and Facebook messages from over a dozen classmates asking where I was and if I was okay. I was, however, overweight, which obviously equalled bullying in the PA's mind. So we went private. We found a gastroenterologist who did a colonoscopy and endoscopy on me, and when I woke up, she told me I had six ulcers, five of which, had they gotten any worse, would have required surgery. I'd had these ulcers for five years, and everyone told me that I was making up all of my symptoms (vomiting, stomach pain, inability to eat ice cream or other foods high in sugar, as well as acidic or spicy foods without throwing up). It took 5 years of ER visits and doctor's appointments for someone to actually believe me and figure out what was wrong. Six and a half years later, I'm pretty much asymptomatic and doing well. Also I can eat ice cream again, which is honestly a miracle in my eyes. Doctors need to stop assuming that kids are faking injuries or illnesses to get out of school. I missed the last two months of my senior year, which was devastating for me because it meant missing out on spending as much time as possible with my best friend before I left for college. Always believe kids when they say something's wrong. Odds are, they're telling the truth.
@AtlanticGiantPumpkin
@AtlanticGiantPumpkin 4 жыл бұрын
Sees title "oof big mood"
@jkarley42
@jkarley42 4 жыл бұрын
I have Type 1 diabetes. Imagine a doctor telling me, "Treatment? Why? There's no cure anyway." Unacceptable.
@dawntomlinson8793
@dawntomlinson8793 3 жыл бұрын
My husband sent me this because I was diagnosed with EDS about 15 years ago, with no real treatment or direction. I am now in my 40s and it feels like my joints are getting much worse. I had 3 seperate injuries in about 6 weeks last fall and the chronic pain is getting terrible. Thank you for speaking out. On a side note you may need a workup for Hashimoto's Thyroiditis if you are missing the last third or your eyebrows. Sorry....I am in that boat too and that is a symptom....
@PixelatedFaerie
@PixelatedFaerie 3 жыл бұрын
I was diagnosed with EDS at 27 and Grave's Hyperthyroidism 2 years before that. I'm 31 now and have developed Hyperparathyroidism and am trying to get surgery to get my adenoma/diseased parathyroid removed. My body just never stops.
@meganscheid7633
@meganscheid7633 2 жыл бұрын
I was diagnosed with eds two years ago. I spent most of my life fighting both my family and doctors to find out what was going on. Even though the journey was rough, I realized I was lucky because the people with Eds before me had it a lot worse. Even with that I hope medical systems can become more respectful and responsive to patient needs. It’s great to here others out there with Eds because I’ve felt kind of lonely/lost with it because of it’s uncommonness
@___LC___
@___LC___ 4 жыл бұрын
It has taken until I was 44 for someone to ask “are you hypermobile?” By now I have arthritis throughout my body and have had so many dislocations, I didn’t think my leg was broken when I broke both my tibia and fibula. I simply put my foot back in place, like all the other times. I recently switched to the Mayo health system, where with one look at my symptoms one doctor immediately knew the problem. Apparently, looking a decade younger than I am was a big indicator.
@Call-me-Al
@Call-me-Al 4 жыл бұрын
Hmm, my mother has always looked like a decade or two decades younger, and all us kids of hers are way more flexible than normal, except not being able to pull thumb all the way to the arm or other "doublejointed tricks", just close...
@squeakybgaming
@squeakybgaming 4 жыл бұрын
@@Call-me-Al You don't have to be ridiculously hypermobile to have EDS - the Beighton score is the usual tool, and most adults only need 5/9 to get a diagnosis. Worth checking out!
@ChiiSan09
@ChiiSan09 4 жыл бұрын
Ok......... I'm starting to worry. Minus dislocation, as far as I can tell, that sounds like my mom and myself. Maybe I should get back on Medicare to check....😓😓😓
@carollynnhall1705
@carollynnhall1705 4 жыл бұрын
Last year at 45 I was diagnosed as hypermobile. All my life I've considered myself a stiff person. My PT explained that the stiffness was my muscles all locked up from holding my body together. Crazy!
@squeakybgaming
@squeakybgaming 4 жыл бұрын
@@carollynnhall1705 Yeah, my hamstrings are made of steel because my hips and knees are freeloaders...lol.
@hillarylarcenceil9224
@hillarylarcenceil9224 4 жыл бұрын
I was misdiagnosed until my daughter was born with the same condition and all her limbs were dislocated at birth. Not my doctor (much too busy to care) but a student doctor, bless him, got both of us into a specialist before we even left the maternity ward. Year's of misdiagnosis for me but my daughter got surgery in the first two weeks to deepen her joint sockets and 3 months in and out of traction and shes 7 now and I mean clumsy yes all flop and bend but running and jumping with her friends and that's all I can ask for.
@connierichards3909
@connierichards3909 4 жыл бұрын
This really warmed my heart! I’m sorry you had to go so long with pout knowing what was actually wrong but I’m so glad you and your daughter had that student nurse with you to get you a specialist! I hope you’re both doing well!
@hillarylarcenceil9224
@hillarylarcenceil9224 4 жыл бұрын
@@connierichards3909 we are! It's the first time in near two decades I've been without leg braces and it really shows how proper care can change lives.
@state924
@state924 4 жыл бұрын
When I was 7 I had a hearing test because I had reported, to my shocked mother, that I could not hear at all from my right side. She had handed me the phone in my right hand and I instinctively switched it to my left hand, so I could listen to the call. My mother asked me why I would switch, so I told her that of course I had to switch, otherwise I would not hear the call. I was seven and my mother had no idea I was deaf. I hadn’t been hiding it from her. I just thought I was normal. I knew that some people had wheel chairs, some people had asthma, and some people needed glasses. I just thought, “Well, this is my thing,” it was my normal since birth. I figured my mother already knew. 🤷🏻‍♀️ The technician who performed the test said that I was faking. My mother, the beloved she-devil, threw an absolute fit and threatened to sue the technician for malpractice. All in all, we walked away without a verified diagnosis, and my mother simply believed me. Thank goodness! Now, why would I fake that????
@ashildrtheswift3028
@ashildrtheswift3028 4 жыл бұрын
Jesus Christ, some doctors shouldn't be doctors
@jphone6606
@jphone6606 4 жыл бұрын
Similar story, just less intense. My parents found out when I was around 8 or 9 that I had minor hearing loss because of my own input as well as the technician's. I told them I saw them moving knobs and looking at me to see if I would react, but I couldn't hear anything. It scared me. My mom said she asked the doctor why they hadn't told her earlier on. They said they decided I just wasnt paying attention because I was a little kid. I now see an audiologist and wear hearing aids outside the house.
@user36able
@user36able 4 жыл бұрын
Ugh, I’m sorry you had to go through that. Thank god for your mom, she sounds awesome!
@m0L3ify
@m0L3ify 4 жыл бұрын
I get dragged into the ER, yelled at, poked, stabbed, pinched, bruised, threatened, drug tested, etc. etc. ... and then accused of faking to get attention and charged thousands of dollars for the visit. I gotta ask...why on earth would I want THAT kind of attention?? Good lordy...
@state924
@state924 4 жыл бұрын
So, I thought of another thing. When I was waitressing at a restaurant, quite frequently I would not hear everything that the customer wanted. Then I would apologize and explain that I’m deaf, so sometimes I will completely miss parts of sentences and not realize it. I would say that most of the time customers were understanding and they even took the time to hear my story. However, there were a few times where a customer would say that I am FAKING being deaf because I’m using that as an excuse for not getting everything they asked for. It was embarrassing and hurtful, and one time it was so bad that I asked the manager to speak to them and verify that I was deaf and not faking it. Then my manager would report back to me that the customer said I didn’t look deaf. What exactly does a deaf person look like???
@GhostLightPhilosophy
@GhostLightPhilosophy 3 жыл бұрын
Me : gives them a laundry list of related symptoms Doctor : *prescribes antibiotics and painkillers* Me :
@chelseah6152
@chelseah6152 4 жыл бұрын
Meanwhile people in the US are searching on KZfaq how to do surgery on themselves because they can afford basic healthcare.
@lemondew8138
@lemondew8138 4 жыл бұрын
Honestly from having lived in Canada( with universal health care) for 19 years and USA for 15 years, I prefer having to pay to see a doctor. I have serious health conditions and Canada made me wait roughly 16 months for a kidney ultrasound. I moved to the states and received ultrasound, kidney biopsy and was diagnosed in a month. I can call my nephrologist, immunologist, neurologist or primary care and be seen in a day. I can go to the hospital for a suspected pulmonary embolism and have a bed in 5 mins. Yes my medications cost A LOT, my doctor visits cost A LOT. But my insurance has a maximum out of pocket of 5,000$/year so anything after that is free, until it resets in January of each year. Neither systems are perfect, but having lived using both, I would rather pay.
@pleaseenteraname7153
@pleaseenteraname7153 3 жыл бұрын
Then they should get better jobs or find out what aids they qualify for :)
@Jhaiisiin
@Jhaiisiin 3 жыл бұрын
@@pleaseenteraname7153 I work a job with a fortune 50 company making over $50k per year (a decent wage in my location due to a relatively low cost of living) and yet my healthcare is still expensive enough that I can afford the costs per month but never go to the doctor because actual visits can break the bank. So maybe enough with the "get a better job" crap. The US healthcare system is horribly mismanaged and excessive in its costs.
@sheenajae
@sheenajae 3 жыл бұрын
@@lemondew8138 is there an option to go private in Canada?
@Jahleesu1
@Jahleesu1 4 жыл бұрын
My doctors told me repeatedly that I can't have hEDS because "it's to rare", although I meet all the diagnostic criteria... it's so frustrating. I have just given up getting a diagnosis...
@breonawarren1507
@breonawarren1507 4 жыл бұрын
Did they not even bother to test? If I were you I’d demand the test or find a doctor who specializes in it & will hear you out.
@shayelea
@shayelea 4 жыл бұрын
Here’s the thing: OF COURSE IT’S CONSIDERED RARE if no one will diagnose it!!! “You can’t have that because it’s rare” is a cop out anyway because...like...some people do have it. But I’m convinced that hEDS isn’t rare at all, it’s just that no one will diagnose it because it’s complicated or THEY are ignorant about it. I suffered for a lot of years not knowing what was wrong with me, but as soon as I heard about hEDS I immediately knew that was the thing. But I took “there’s nothing wrong with you” as an answer from my doctors for far too long. I know that can be exhausting and after awhile you just give up. But once you are ready to start looking again, I’d encourage you to join a group for people with EDS in your area. I actually found one on Facebook and they pointed me to the doctor that diagnosed and now treats me.
@thecoolestgingerkid
@thecoolestgingerkid 4 жыл бұрын
I hope you get a new doctor!!
@anniek4681
@anniek4681 4 жыл бұрын
It's proven by an DNA test. There are 19 different genes in play which are causing it, because there are genes which are responcible to make the proteine for the connective tissue. If the doctor isnt just listening to you, find another who does. The Hipcratic oath speaks of doing no harm. Well in this case doing nothing IS causing harm. Maybe you want to remind him/her of that. What if misdiagnosing it is keeping it rare. There are 6 different types, so yeah that makes it even more difficult because it's not 1 defining symptome. Sinds when is "it's to rare" is a diagnosive tool to dismiss a diagnosis? In the words of Sherlock Holmes: When you have eliminated the impossible, whatever remains, however improbable, must be the truth. Diagnosing an illness, is being a detective. The who dunnit here are the 19 genes…. Just bug them long enough and say that the easiest way to shut you up is to give you the DNAtest, and then watch them grovvel when it turnes you are right....and when it turnes out you havent got it....you know it atleast for sure and you can continue searching.
@xxandra71
@xxandra71 4 жыл бұрын
It's actually not rare, it's just rarely diagnosed. Due to doctors like yours. I'm so sorry your doctors don't have the right information....
@leonie1746
@leonie1746 4 жыл бұрын
I have type 1 diabetes, imagine if my doctor had said “well there’s no cure so why would I treat you?” Complain about that doctor!
@LulaMae21
@LulaMae21 4 жыл бұрын
@Amanda York That's crazy! And a poor assumption as people do sometimes develop type 1 even into middle age! Glad you got properly diagnosed.
@samanthavanscoder9536
@samanthavanscoder9536 4 жыл бұрын
@Amanda York my neice had a docter who tlod her that children cant get type 2. My sister changed their gp so fast.
@sillyoldliz
@sillyoldliz 4 жыл бұрын
hopefully that doctor never finds out that almost everyone eventually dies.
@musicinga
@musicinga 4 жыл бұрын
I will definitly file this comparison for future reference for the next doctor that tells me that they can't treat me because there is no cure!!! Thank you very much! Finally I have something to say in a situation like that!!!
@WritingSch
@WritingSch 4 жыл бұрын
There’s no cure for cancer, but you still treat that.
@alysonbadders7042
@alysonbadders7042 3 жыл бұрын
As an adult with EDS and a vitamin D3 deficiency... I miss dancing. I'm so broken. I feel you, Jess.
@Alex-fm5mo
@Alex-fm5mo 4 жыл бұрын
13:33 EXACTLY MY EXPERIENCE WITH ALMOST EVERY SINGLE ONE OF MY 26 DIAGNOSIS!!!! All of my doctors refuse to refer me to someone to get diagnosed because (as my GP said) "a diagnosis wont change anything because there is no cure so having a name for it wont help at all so why bother?" and i was FURIOUS because having a name for it MATTERS VERY VERY MUCH! it might not be curable but you can see treat it!!!!! and once you have the simple bit of paper with the diagnosis written on it, PEOPLE ACTUALLY TAKE YOU SERIOUSLY WHEN YOU SAY YOU'RE IN PAIN!!!!!!! surprise surprise.
@PixelatedFaerie
@PixelatedFaerie 3 жыл бұрын
Before I finally got doctors to diagnose me with Hyperthyroidism and later EDS, I had a naturopath say to my face that he "doesn't like to send patients to specialists because they'll always find *something* wrong with you". I never went back obviously. But I imagined going back and shoving those diagnosises in his face. If I'd listened to him, how much more sick would I be.
@caseycombs4282
@caseycombs4282 4 жыл бұрын
Jessica: I'm a bit floppy Me when I found out when I had a bit of hypermobility: *actual reaction* MOM IM BENDY
@TheMimiandbb
@TheMimiandbb 3 жыл бұрын
I have EDS and my joints are becoming more hypermobile and I literally told my parents "I'm evolving into my final form"
@pengupenguin8589
@pengupenguin8589 4 жыл бұрын
"Trampolines, fun until they snap your ankles" oml that had me dying
@hanac1983
@hanac1983 4 жыл бұрын
I remember the day after being on a trampoline sitting in my drs and him saying 'i don't think trampolining is for you' it was such a sad day
@ethanomcbride
@ethanomcbride 3 жыл бұрын
I need JKF to make a viral TedTalk to inspire more rigorous diagnostic practices in the medical community
@nerdyandawesome
@nerdyandawesome 4 жыл бұрын
"hey I had a migraine and then I went blind in this eye, what's that about?" had me cracking up. Thank you so much for your sassy humor! I really needed it today. (I was having a really bad day, because the friend with whom I normally talked and finally laughed about our medical stuff is dead.)
@capricornreader2788
@capricornreader2788 4 жыл бұрын
**sees title** oh is this when EDS comes into play?
@jordanleighwheatley
@jordanleighwheatley 4 жыл бұрын
My exact thoughts
@roisinrowan1341
@roisinrowan1341 4 жыл бұрын
SAME
@jaguarsky55
@jaguarsky55 4 жыл бұрын
Oh, this where the EDS/Marfans comes in to play; I mean look at those narrow shoulders, long bones, and long fingers. I did think though that these maladies had been discussed during medical testing since both are generally genetic and I figured they would have shown up in the genetic testing she had. They are far more common diseases/syndromes.
@AdelleOverton
@AdelleOverton 4 жыл бұрын
Yeah, I was waiting for the mention of EDS too, but Jessica shouldn't have had to pay £300 for the diagnosis. 😥
@jordanleighwheatley
@jordanleighwheatley 4 жыл бұрын
@@jaguarsky55 hypermobile EDS hasn't had an identified gene yet. 12 of the 13 types can be tested during a genetic test but hEDS is through clinical exam and family history only so far. They are still researching
@neckbackcripplinganxietyattack
@neckbackcripplinganxietyattack 4 жыл бұрын
That one dislike is ur gp who knew they failed you
@grinsekatze3085
@grinsekatze3085 4 жыл бұрын
If it comforts you any: The healthcare-systems and the doctors in it in other countries aren't much better. I'm from Germany and I had all kinds of allergic and non-allergic symptoms for decades and was tested for numerous problems and everything came up negative, to the point to where doctors said, it's "only" mentally. Until I was rushed to the ER with a severe allergic reaction (even though every allergy-test in the past came up NEGATIVE) and only then did the doctor in the ER find out, that I was histamine-intolerant! Which means, I had too much histamine in my body and it couldn't handle this overload anymore. I'm now on a histamine-low diet (had to say goodbye to a lot of beloved foods 😢) but my symptoms have improved and in 2 months I'll be tested for it to confirm the ER-doctor's suspicion. Depending on which kind of histamine-intolerance I have (one that is due to an overload of histamine-containing foods or the genetic version, due to a malfunctioning enzyme in the intestines) it might heal completely or at least will be managable with a strict histamine-low diet. Btw: Histamine intolerance is not THAT uncommon, but doctors still don't think of it, when their patient(s) show numerous allergic symptoms but all allergy-tests come back negative
@pandapanda246
@pandapanda246 3 жыл бұрын
My cousin used to have it too and after three years on a histamine low diet she can eat normally and has been for a few years :) she started trying things out again slowly after a good two years of strict histamine low diet
@davedahowell8694
@davedahowell8694 Жыл бұрын
Truly, Thank you I didn't even know that was a thing!
@sofiapatrao2796
@sofiapatrao2796 Жыл бұрын
Heyo! I have chronic Idopathic Angioedema so similar!!
@russianpalooski13
@russianpalooski13 4 жыл бұрын
My favourite (*cough* least favourite *cough*) response that I've ever gotten from my GP when I brought something to her was "That's weird." YES. I AM AWARE. THAT'S WHY I'M TELLING YOU ABOUT IT. Still unsure of why the thing I was asking about happens to me. That was a couple years ago now.
@rf5877
@rf5877 4 жыл бұрын
Doctors can really suck sometimes. Just a couple weeks ago, I got ill (well, more ill than normal lol) and went to the GP to ask what was up. She checked me over quickly, told me I had a viral infection and to go home and sleep it off. Went home, had a nap, and woke up to a fever of 39c and a 155bpm heart rate. Called 111, went to hospital, got a chest x ray.. and it turns out I had pneumonia. Point is, if you feel like something is seriously wrong, trust yourself and don't always take the first opinion you get. Doctors are people like anyone else and you live in your body 24/7, they only get a 10 minute appointment to look you over.
@ChaoticAphrodite
@ChaoticAphrodite 4 жыл бұрын
Hecate Lunati Look up the #DoctorsAreDickheads hashtag on Twitter.
@mightyaxolotl74
@mightyaxolotl74 4 жыл бұрын
Hecate Lunati reminds me that time I had gastroenteritis-like symptoms for a few days but I felt something wasn’t right. Went to the ER against everyone’s opinion. I had appendicitis with atypical symptoms... I didn’t believe in stuff like “gut feeling/something is wrong and it’s *my* body so I know better”, before that time. Now I’m more confident in my instinct and less anxious about my health...
@AishiCheemo
@AishiCheemo 4 жыл бұрын
This happened to me too :o
@AishiCheemo
@AishiCheemo 4 жыл бұрын
I hope you are feeling better by now 💛
@rf5877
@rf5877 4 жыл бұрын
@@AishiCheemo thanks ovy! Still chronically ill but it's back to the normal symptoms for me :) the course of antibiotics really helped.
@Kate-ue6ek
@Kate-ue6ek 4 жыл бұрын
This whole time I actually thought that she knew she had EDS😂
@Vlad2319
@Vlad2319 4 жыл бұрын
Nope! Before this video she had another talking about a *list* of diagnosis
@SteinGauslaaStrindhaug
@SteinGauslaaStrindhaug 4 жыл бұрын
Me too
@suki-yuki
@suki-yuki 4 жыл бұрын
Me too!! Zebra myself 😊
@lucieann21
@lucieann21 4 жыл бұрын
You’re allowed to be upset that you can’t do what others take for granted xo
@jelef001
@jelef001 3 жыл бұрын
I normally hate adverts, but when they pop up in Jessica’s adverts I’m pleased because they are supporting her!
@thewildfae8603
@thewildfae8603 4 жыл бұрын
According to captions, it's Ellis Tan Loss Syndrome. Poor Ellis!
@meagansims2863
@meagansims2863 4 жыл бұрын
"And they can't ball themselves up into a kitchen cupboard while playing hide and go seek.... Madness"
@TheSuwanneeMama
@TheSuwanneeMama 4 жыл бұрын
Meagan Sims I’m almost 55 and I believe I can still ball myself up in a cupboard. Unless I’m having a bad arthritis day - thanks, EDS!
@meagansims2863
@meagansims2863 4 жыл бұрын
I fit in... but then someone better find me, because too many things dislocate and I get stuck in the cupboard indefinitely without help
@clairemurphy-petri2601
@clairemurphy-petri2601 4 жыл бұрын
I have EDS and when I first found out about it it was like everything suddenly clicked into place. All my doctors agreed that I almost definitely had to however they all refused to make a formal diagnosis because "they don't have the qualifications" (like five doctors are experts on EDS. Total. No one is 'fully qualified' if you look at it like that) and because they didn't like making rare disease diagnoses because its 'bad for their seen as someone who just hands out rare diseases like candy' or something like that (I don't get it either). Doctors are whack.
@Shadowkid10271
@Shadowkid10271 2 жыл бұрын
A lot of the time, they will refuse to diagnose until you see a genetic doctor. They did that to me and the soonest I could get into genetics was 3 years.
@MusicIsARainbow
@MusicIsARainbow 4 жыл бұрын
I have a KZfaq friend whose daughter has EDS and they were trying to raise money for a special wheelchair because walking on uneven terrain causes dislocation of body parts. She can't walk on sand and really wants to go to the beach and help on her family's farm. I'm so sorry you've had so much pain! I have different health problems and totally understand how humor helps! I love your personality.
@Sarah-pl8rp
@Sarah-pl8rp 4 жыл бұрын
(Not-so) fun fact: Over 80% of cancer patients get misdiagnosed at least once before getting diagnosed with cancer!
@ayyohwinning
@ayyohwinning 4 жыл бұрын
Wylde Fyre yup. It’s the sad truth. Happened to my mom. Hers started out with a pain in her hip, which we only later found out was the cancer eating her bones - which by that point was also in 70% of her organs. She bounced around doctors getting diagnosed with nerve issues and arthritis and all sorts of stuff. Only once one doc decided after several weeks of the pain actively getting worse “hey, what the hell, let’s do a cat scan and see what turns up!” And we found that she was basically just waiting to die at that point. Bottom line, time is your enemy. If you suspect, TELL THEM AND DONT GIVE UP UNTIL YOU KNOW. That goes for any medical condition - inconveniencing shitty doctors by not following through on figuring out what’s wrong is not worth your life. Just do it.
@layercakearts
@layercakearts 4 жыл бұрын
Yep here. 5 months of appts of drs saying you’re too young (36) while tumors were bursting thru my skin every week. After the eventual surgery and the facts right there, the dr was somewhat humble and yet still kinda assinine and unable to apologize. Waited so long I was then stage IV and terminal but weirdly still here battling the funk 14 yrs later (actually my lupus autoimmune is killing the cancer, can you believe it?). Such Weirdness .
@NotAnotherKuromi
@NotAnotherKuromi 4 жыл бұрын
I get the government & media do not want to cause mass hysteria but honestly Drs misdiagnosing or dismissing cancer is way to common. If more people are not made aware of it, how is it supposed to improve? My hairdressers dad got told he just had heart burn, it got worse so he returned to his Dr & was given more antacids, rinse & repeat until he was on 3 times the reccomend dose. His family was concerned & his symptoms were getting worse but he insisted the Dr said he was fine & it was just a bit if heart burn, so not to worry. Turns out he had oesophageal cancer which spread to his stomach & heart which killed him. The whole don't Google your symptoms as you are too stupid to know what is a relevent or a likely diagnosis idea that is pushed annoys me too. People doing their own research online, as their Dr has been negligent, has enabled many people to receive an accurate diagnosis. Including in some people catching cancer & saving lives.
@layercakearts
@layercakearts 4 жыл бұрын
Sammy, exactly! I’ve been a support group facilitator for 10 years for women with advanced-stage cancer and heard SO MANY stories of misdiagnosis, and MOST of the women (I’ll say 90%) found their own cancer thru self-examination and then carried the burden of proof to get drs and insurance co to approve the scans, testing, etc. MOST women find their own cancer, it’s a simple fact. People know their own baseline for normal but drs are tired, burned out, arrogant, heard it all, etc whatever the situation and it’s an uphill battle here in america.
@quirkyblackenby
@quirkyblackenby 4 жыл бұрын
Wylde Fyre Jesus that’s awful
@tinilily
@tinilily 4 жыл бұрын
I regularly have doctors tell me "Not every symptom has a cause." whenever I tell them I don't want to blindly treat the symptoms.
@letyourselfrest8932
@letyourselfrest8932 4 жыл бұрын
i feel like looking into the camera like im in the office every time this happens
@annonimooseq1246
@annonimooseq1246 4 жыл бұрын
Anonymous how did you perfect encapsulate that feeling???
@letyourselfrest8932
@letyourselfrest8932 4 жыл бұрын
@@annonimooseq1246 Talent
@samantharedacted9226
@samantharedacted9226 4 жыл бұрын
Wtf how could a symptom not have a cause!? Isn't that what a symptom is? Something CAUSED by a bigger issue?
@tinilily
@tinilily 4 жыл бұрын
@@samantharedacted9226 they did tests that showed that I didn't have the most likely illnesses I could have according to my symptoms and started treating the most important symptom. Basically making the symptom the illness and linking everything that doesn't fit to too little exercise, too much stress or some psychological issue. There's not enough time to get the full picture so they treat everything separately. For example I had a chronical daily headache for 2 years until my grocery delivery lady said she had a migraine due to hormones and maybe I should stop taking birth control. I have previously talked to the gyn. about that and she said "nah, can't be anything to do with the female anatomy or birth control". They did CTs, MRTs, blood work, EEG, EKG, whatever else and basically said "you're healthy according to your test results". So the symptom became the illness. The gave me pain meds, migraine meds, antidepressants that made me more sleepy than I was. Told me to exercise more. I stoped taking birth control and oh miracle the headache is mostly gone. My delivery lady is more qualified to heal my body than 5+ docs. I'll have to ask her about my acne next. That also "has no reason".
@Toon_Topaz
@Toon_Topaz 4 жыл бұрын
Your body may be weak but you’re one of the strongest willed people I’ve seen :3
@rickfordmorningstar130
@rickfordmorningstar130 3 жыл бұрын
Holy... Holy SHIT! These symptoms match my sister almost PERFECTLY!!! We've been trying to figure this out for AGES, with little luck. I'll see to it this is brought up next time she goes to the doctor.
@alixinthemiddle
@alixinthemiddle 4 жыл бұрын
I love you Jess. It’s ok to be sad about the trampoline. It is sad.
@OuchMouse
@OuchMouse 4 жыл бұрын
I SCREAMED at "Why? It's not curable!" I had exactly the same thing!! My EDS was misdiagnosed as fibromyalgia for SO long even though it made no sense. They're still dragging their feet about actually writing it down, making it hard to talk about, so yes. Me too.
@Zouiful
@Zouiful 4 жыл бұрын
Wow i was diagniosed with EDS back home in Belgium, since moving to Scotland, doctors keep telling me I have fibromyalgia?? Making it 100x harder for me to access my treatment here... it's SO frustrating
@naseerahvj
@naseerahvj 4 жыл бұрын
My sister's eds was misdiagnosed as fibromyalgia by the same doctor who misdiagnosed me with fibromyalgia, even though she told her her sister and niece are diagnosed with eds! She told her she was absolutely not hypermobile. Latter that day she saw a physical therapist who diagnosed her as 100% hypermobile.
@michimelody4036
@michimelody4036 4 жыл бұрын
My journey started out as a fibro diagnosis 10 years ago. Nearly 11 actually, ugh. I just got my genetic testing done recently waiting on my results. 🤞
@LifeinBonnieland
@LifeinBonnieland 4 жыл бұрын
Ugh. Why do doctors feel the need to keep diagnoses off of patients' charts. It's like they're actively trying to ensure that you continue to appear crazy. 😣
@michimelody4036
@michimelody4036 4 жыл бұрын
@@LifeinBonnieland I got sent to so many psychiatrists because of my illness being invisible.... They think you are crazy.
@greysonrichter4366
@greysonrichter4366 4 жыл бұрын
I was diagnosed with fibromyalgia this year (finally!) and at the time my rheumatologist also said I have hypermobility. He also said it like it was just a thing instead of A Thing. My first thought was oh so that’s why I can do the prayer thing behind my back like Yvie Oddly from RuPauls Drag Race. 😂
@PixelatedFaerie
@PixelatedFaerie 3 жыл бұрын
A lot of EDS people get misdiagnosed with fibromyalgia before they get a proper EDS diagnosis.
@LilLilacc
@LilLilacc 4 жыл бұрын
Martina from the channel “Simon and Martina” also has EDS. She is really open with he struggles, both physically and emotionally, as well as how living in a foreign country can effect things. If anyone has EDS, or is just looking for another perspective of it, check them out!
@mysimplisticpleasures194
@mysimplisticpleasures194 4 жыл бұрын
I, also, was going to mention Martina! 👍
@dimitritallnova6509
@dimitritallnova6509 4 жыл бұрын
Simon and Martina and Jessica need to team up and talk about their struggles with EDS and Doctors together
@TheAlexaJacks
@TheAlexaJacks 4 жыл бұрын
Yes!
@stormkern
@stormkern 4 жыл бұрын
I approve this message
@jchoi5066
@jchoi5066 4 жыл бұрын
As soon as she talked about dislocations, the first thing I thought of was Martina and her story of living with EDS!
@angelara2591
@angelara2591 4 жыл бұрын
Yes ❗
@UnknownVir
@UnknownVir 4 жыл бұрын
add Stevie Boebi to the list!
@ericasawyer9835
@ericasawyer9835 4 жыл бұрын
when I hear people's stories of being misdiagnosed and ignored by doctors for so long, I realise how lucky I am that I managed to find a doctor at 19 who agreed with me and sent me to a rheumatologist and physio and occupation therapy. I'm only 19 and for 10 years I've been in pain with no answer and no way to help it. Getting my diagnosis of hypermobile ehlers danlos syndrome and fibromyalgia has made it just that little bit easier :) hope things are getting better for you Jessica and for others watched and reading :) xx
@lilmissmonsterrr
@lilmissmonsterrr 4 жыл бұрын
Unfortunately fibromyalgia isn't really a diagnosis/answer. It's just a descriptive word for what you're experiencing and what they call a diagnosis of exclusion. Basically means "we don't know what it is but we believe you're experiencing it". There's no real answers.
@LifeinBonnieland
@LifeinBonnieland 4 жыл бұрын
Diagnoses can be so useful for getting actual help for doctors, can't they? Glad you were able to get diagnosed at a relatively young age. 💜💜💜
@mxpronounced3224
@mxpronounced3224 4 жыл бұрын
@@lilmissmonsterrr exactly. Its so frustrating when doctors say "oh you have fibro, just exercise and eat healthy" as if its a one-treatment issue.
@lilmissmonsterrr
@lilmissmonsterrr 4 жыл бұрын
@@mxpronounced3224 yea that's what mine told me. Like I understand that if you're not making healthy choices then you're not doing your part, but they say it like it's a cure or that it's good news overall lol. Usually a diagnosis gets you answers. But we're still just as clueless as before. But the word brings us together, at least. We can all connect through it. So in that sense it's at least helpful.
@hopegold883
@hopegold883 4 жыл бұрын
@Erica Sawyer Would you mind saying what country you live in?
@sepiasmith5065
@sepiasmith5065 4 жыл бұрын
9:05 "you have something, I just don't know what" is the entire history of my mom's health. She has chronic illnesses up the wazoo and we still barely know anything because nobody seems to care + we can't afford to keep digging and getting new doctors. (I'm from America, if you hadn't guessed.) It's really frustrating and she's of course been accused of faking at every turn.
@narraticn
@narraticn 4 жыл бұрын
Her accent is completely enchanting
@krislaura
@krislaura 4 жыл бұрын
Since you can’t do trampolines i feel like you deserve a zero gravity experience! It’s low impact right? I feel like the only issue might be the cute dresses...might wanna wear cute pants instead.
@squeakybgaming
@squeakybgaming 4 жыл бұрын
The only issue is vascular - the high-pressure to low-pressure would likely cause blacking out. I researched because I want to do that, too. Can't. :/
@louisadale5907
@louisadale5907 4 жыл бұрын
People with marfans type hypermobulity have to be extremely careful with their cardiovascular system. The aortic root is a persistent issue for people with this.
@sillyoldliz
@sillyoldliz 4 жыл бұрын
jess: "my arm span is longer than my height" me: huh that sounds a bit marfan-y doesn't it jess: "...with marfanoid phenotype" me: omg
@SleepyKiwi73
@SleepyKiwi73 4 жыл бұрын
I have Osteogenesis Imperfecta and my arm span is longer than my height and it’s my third favorite thing about me
@tsunderechild2777
@tsunderechild2777 4 жыл бұрын
My rheumatologist checked my armspan to height and it was like 196:182cm so now they’re investigating me for Marfans as well as eds since I have the hypermobility, mast cell fuckery, gi disaster and vascular weirdness. Hypermobility seems to run in my family and other relatives are being investigated for eds.
@rebeccaferguson7734
@rebeccaferguson7734 4 жыл бұрын
Tsundere Child : "mast cell fuckery"....love it, only those experiencing it could really be amused and comforted....TY!
@ME-pt7uh
@ME-pt7uh 4 жыл бұрын
@@tsunderechild2777 i also have eds and mast cell fuckery... I'm currently waiting to get in with this allergist to get a benadryl pump because appatently it's a new miracle treatment all his eds patients are raving to him about. 🤞🤞🤞
@chiita3786
@chiita3786 4 жыл бұрын
Same
@oliver-nu3ws
@oliver-nu3ws 4 жыл бұрын
"Raise your hand if you saw that one coming" me, while driving: (raises my hand)
@CamillaZahn
@CamillaZahn 4 жыл бұрын
Despite not having paralyzed my arms this is basically the story of my life, and you just gave me a huge epiphany about why I had problems with trampolines. I’m happy you got your diagnosis. It is a terrible pain in the ass to find good doctors to help you, I’m also happy you found someone that can helps you! Zebra hugs ❤️
@terrytheboxwithlimbs
@terrytheboxwithlimbs 4 жыл бұрын
I was always told that my juvenile arthritis was just “growing pains” by every doctor we saw, then we moved to a bigger city and I got diagnosed almost immediately.
@penelopetroxellmillar6482
@penelopetroxellmillar6482 4 жыл бұрын
My dr said I was going through a phase so my parents insisted on seeing the other dr in the practice who luckily recognized juvenile arthritis right away and referred us to a specialist in a local children’s hospital. I was 18 months old.
@terrytheboxwithlimbs
@terrytheboxwithlimbs 4 жыл бұрын
Penelope Troxell Millar I’m glad yours got diagnosed so early, (that dr. must have been crazy) mine didn’t get diagnosed till I was 9.
@whychoooseausername4763
@whychoooseausername4763 4 жыл бұрын
How bad was it ? Did it restrict your movement or growth ? (I had severe growing pains with a family history of JIA and RA, wondering if I should get my current joint pain and shortness of breath examined....)
@Lytah84
@Lytah84 4 жыл бұрын
In America both a rhumetologist and an orthopedic specialist told me "they don't diagnose that" in refrence to EDS. So many people cannot afford to go private to get medical care.
@jenroses
@jenroses 4 жыл бұрын
My FP knew little about it, looked it up, ran me though the test, said, "Yeah, looks like you have it" and it went in my charts and I never had to fight after that for the EDS diagnosis... and her kid was diagnosed not too long after.
@Momoxdear
@Momoxdear 4 жыл бұрын
The rheumatologist I understand, but it might be worth getti g second opinion from a different orthopedic or physical medicine doctor, bc the one that told you they couldn't deal with EDS is trash and should be able to at least assess for it.
@dragonfox89
@dragonfox89 4 жыл бұрын
Wait! We have private clinics? Where?!
@Lytah84
@Lytah84 4 жыл бұрын
@@dragonfox89 you got $200 grand for medical expenses? Nope? Then they are invisible to you 😂😂😂😂😂
@craftyfiona1932
@craftyfiona1932 4 жыл бұрын
I have hEDS and always thought that might have been what's going on with you, Im glad you finally have the right diagnosis. Took me 25 years!
@flwrcrwnbncr
@flwrcrwnbncr 4 жыл бұрын
The “thumb to the wrist” thing is also my go-to party trick! 😊
@codename495
@codename495 4 жыл бұрын
Sam never fails to get a good reaction out of people. They also freak out with how I ( the 35 year old 6” tall woman) is more flexible than they ever were and how I’ve literally never felt what a “stretch” feels like.
@viriandjuniper
@viriandjuniper 4 жыл бұрын
Misdiagnosis always feels like a betrayal, by both drs and, in a way, of/to yourself
@mightymia9
@mightymia9 4 жыл бұрын
As a physical therapist, nothing makes me happier than when my patients can advocate for themselves and get the care they need and deserve. Knowledge is power.
@duh_vonne
@duh_vonne 4 жыл бұрын
You're such a lovely person. I love watching your videos. I cried when you started tearing up while explaining some of what you've been through. I'm so sorry that you've been treated poorly in the healthcare system and so glad that you've finally found a doctor who takes your condition seriously and is giving you the diagnostic care and treatment you deserve. And bless Claudia for coming into your life and making it better.
@Artemis300
@Artemis300 4 жыл бұрын
My best friend has EDS and it is absolutely INFURIATING how typical it is for folks with EDS to go years without a diagnosis and to be so utterly neglected. They recently got Smart Crutches, which were designed with with EDS in mind, and they’ve been so so so happy with them.
@NiaJustNia
@NiaJustNia 4 жыл бұрын
I got diagnosed in the year of our lord, 2019, with female hysteria. Despite already being diagnosed with Ehlers-Danlos Syndrome (which took over 7 years to diagnose, which meant 7 years until they'd give me any pain relief) and other associated health problems, but he turned around and said he doesn't believe me, and thus the hysteria diagnosis. Soooo here we are, 6 months later suddenly going blind with migraines, frequent near fainting, a new doctor, and a "something is wrong, we need to investigate further, so we're sending you to neurology and cardiology." When I got accused of just being hysterical, I was having to try so hard to fight back tears. He agreed to a king of hearts monitor, then didn't tell me it picked up irregularities. I've refused to see him since. With my EDS diagnosis though, there's a lot of the symptoms I don't have, like I never have the scarring problem, but because they don't expect you to have every symptom because of the new diagnostic criteria, I actually got taken seriously. However I had to see a geneticist to get the official EDS label. Getting the label does hugely change the access to things available. I got access to orthotics (to stabilise everything from the hips down) and an OT for hand and wrist braces, I got a home assessment where they raised my sofa up to minimise hip strain, I got new bathroom taps, a perching stool for the kitchen, a special chopping board etc. It's been incredible!
@ShastaMiriander
@ShastaMiriander 4 жыл бұрын
NiaJustNia that opening line made me chuckle 😂 glad you are seeing better docs and finding ways to navigate life!
@Cara-39
@Cara-39 4 жыл бұрын
Female hysteria?? I'm sorry, did your Dr time travel from the 1850s??? How does any medical professional give that diagnosis with a straight face?!?
@NiaJustNia
@NiaJustNia 4 жыл бұрын
@@Cara-39 I was absolutely stunned honestly. I've refused to see him since and switch GP
@snowmonster42
@snowmonster42 4 жыл бұрын
I am so, so sorry. I could tell you how to get out of that diagnosis (because conversion disorders - the proper name for this diagnosis - are real, at least in theory. But they are certainly not exclusive to women and the kind of people who throw that diagnosis around NEVER get it right.) But it wouldn't help. The people who throw that diagnosis around never forgive patients who prove them wrong -- he'd just slap you with a different, even more evil diagnosis. Please never, never see that doctor again. You're right. In the 21st century that is absolutely, criminally, vile.
@hayleyhodson4791
@hayleyhodson4791 4 жыл бұрын
“There was a lot of crying” wow what a mood
@bethanykennedy812
@bethanykennedy812 3 жыл бұрын
I was once brought to the hospital via ambulance because I passed out cold in the middle of church. The church I was going to at the time required the congregation to stand during the reading of scripture. Standing up and still can lead to my passing out. It's part of my Nureocardiogenic Syncope. But I hadn't gotten a diagnosis yet, so I didn't know that yet. They couldn't find anything wrong with me except my blood pressure was low. Because that's what happens. In a standing position, I cannot maintain my blood pressure unless I'm moving, and not always then. I used to fall a lot before they figured out that I was actually passing out. Anyway, while I was signing the exit paperwork to leave the Emergency Room, I passed out again. When I came to, they simply had my aunt who'd come to pick me up wheel me out to her car. It was like we don't care if you passed out again, you've already been discharged. Go home. Yes, we know we didn't give you any answers. Go and see your primary care doctor. Why are you still here? My PCP, who actually does listen to me, is a wonderful man, sent me to the hospital for testing. The doctor there was horrid. I actually heard him tell a nurse, "yeah she's got a new symptom every day" in a tone of voice that was quite sarcastic and condescending. I should mention by this time my stutter was so bad that I essentially couldn't speak. They think the stutter is actually linked to my dyslexia. It takes energy to speak without it and it gets progressively worse when I'm tired. Tired is not a strong enough word for what I was experiencing at the time. Exhausted isn't strong enough either. I mean I literally didn't have the energy to speak.
@mariekedufresne53
@mariekedufresne53 4 жыл бұрын
My first thought was EDS. I was only diagnosed when I was 40. I’m 44 now. Spent my childhood and teen years constantly falling down/tripping over my feet bc my ankles were so loose and wobbly. I have scoliosis, arthritis in my back and shoulders, bursitis in my hip.. all bc of how my joints function (or dont)... glad they finally figured it out.
@Sassyray
@Sassyray 4 жыл бұрын
I was literally talking to my doctor about the possibility of me having EDS yesterday. The look on his face when I pulled my thumb to my forearm was hilarious. Congratulations on getting correctly diagnosed!
@naseerahvj
@naseerahvj 4 жыл бұрын
Print out the criteria off of the eds society website so you can bring to him
@Sassyray
@Sassyray 4 жыл бұрын
That’s what I did. Between telling him the symptoms I have that match it and showing him things I can do that most people can’t, I think he got it. 😁
@AngeLEAnaFlyer
@AngeLEAnaFlyer 4 жыл бұрын
Wait, that’s not a normal thing? ...... *tried & successfully did both of Jess’s “party tricks”.....
@Sassyray
@Sassyray 4 жыл бұрын
Exactly! My favorite trick to show people is to grab wrap my hand around the wrist of my opposite arm and twist. My hand and upper arm are in their normal position, but my forearm rotates. :D It's an odd feeling when you get that "This ISN'T normal???!!" feeling.
@AngeLEAnaFlyer
@AngeLEAnaFlyer 4 жыл бұрын
Sassyray not sure I can do that (depending on what you mean exactly? Having issues recreating LOL) but I can subluxate (new fun word...) my shoulders on command without even touching my arm, have flat feet, small round (not painful) spheroid bumps on my forearms for no reason, and have been the QUEEN of rollover ankle injuries most of my life.....i also get a heart flutter (super fast heartbeat) for no other reason after large meals (unsure if related), and a few other things that have me now questioning whether I need to explore this possibility even further....
@cleonibbles7930
@cleonibbles7930 4 жыл бұрын
The fact that NHS doctors are so unwilling to even refer people is horrible and so common ugh
@JuliaKallen94
@JuliaKallen94 4 жыл бұрын
Cleo Nibbles same in Sweden... 😒
@charlottemitchell8903
@charlottemitchell8903 4 жыл бұрын
I think it’s because the NHS is under so much pressure along with underfunding. 😅
@jeanise7183
@jeanise7183 4 жыл бұрын
Same in the US. I've heard it happens in Australia too. Seems to be a problem all over the world apparently.
@SevCaswell
@SevCaswell 4 жыл бұрын
I had to become serverly suicidal in order to see a psychiatrist, who was then able to formally diagnose my autism...
@sbrox101
@sbrox101 4 жыл бұрын
It’s not that they don’t want to, it’s that they often can’t or know there’s very little point. There are often very specific rules about when you can and can’t refer someone to clinics under different pathways so sometimes it can be very difficult for them. Also they know how long the waiting lists are so even if your symptoms seem worth a specialist opinion/treatment to you, they might not seem as severe to a doctor who sees sick people all day every day and needs to refer even sicker people to a waiting list that’s already 8 months long. I mean of course you’ll get idiots in every profession but the vast majority of doctors genuinely care and are trying their best with very limited resources, while being overworked and tired/stressed
@glauciamsq
@glauciamsq 6 ай бұрын
I am a doctor, got hospitalized due to complications of an undiagnosed crohns disease, no one knew what was wrong with me at the time and filled me with antibiotics, when by my test results it was clear it was something autoimmune. On the 4th day of antibiotics, I had to severly argue with my doctor, using myy OWN medical knowledge, because I was getting worse and worse by the hour, and knew that the right course of actions was corticoids and not antibiotics. Thank God I convinced him, otherwise I woudnt have survived. After I was discharged, I went on, and "diagnosed" myself with crohns disease, because I knew no one would do it or belive me. Later on, I found a doctor who actually officially diagnosed me and now I am happily taking immunomodulators. Also, am being investigated for POTS and hEDS. Dear lord
@xSwordLilyx
@xSwordLilyx Жыл бұрын
The 'what's the point there's no cure' attitude is so toxic. My mom has this attitude, she knows she has Marfan's syndrome, I am still pursuing diagnosis because I need to be monitored. She didn't tell me about it until I was 12. I saw a geneticist and simply was not believed, I was so angry, that guy is lucky I am a pacifist, he treated me like I didn't deserve his time or respect, rushed out early. Treated like a liar because it was difficult for them to find decades old medical records. Talked to me as though he saw 2 people with this every day for 40 years, and I didn't 'look like I had it' (I was gobsmacked). I walked out crying. I can hardly describe how I felt besides 'worthless' and 'freak'. My bf and I holed up in the corner of a shop & I ate a hotdog through tears. Even if they can do nothing (they can do more than nothing, and if there is an emergency it is very important they know I have this), I want to know what is going on. I want to know the outlook. I want to know what I can do to be healthy. I have been sifting through obituaries the past few days (stuck in bed with respiratory illness) making my family health history, finding birthdays of people I have never met, painfully, enlighteningly, and I have already run out of pages because I have a big family. I had to find the form online, doing my own research, on the Marfan Syndrome Foundation website. Nobody told me to collect it on my own or how to do it. I've had these papers for years now, it was just too overwhelming to do it. The grief of losing healthy family members after seeing them whither swiftly away. My uncle smiling and driving go-karts in the spring and too weak to watch the movie he was waiting to see for years by July. He went to bed while we watched it and then we went home. No more grilled potatoes on Thanksgiving. The confusing pain of the grandmother I have never known. I have to do it for my sister. This cannot happen to her out of the blue. I cannot stand to see her in pain. I think I will mail that man a letter telling him he misdiagnosed me because he didn't care whether I lived or died, just did not bother to question his simple opinion, and include pictures of my family.
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