I was misdiagnosed [CC]
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people need to stop letting doctors graduate without listening skills.
or compassion
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)
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)
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.
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 🙂🙃🙃
Okay when people are amazed that their doctor actually gives a shit about them, something's really wrong
THANK YOU
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.
Unfortunately that's very common for people with "out of the common run" diseases.
I actually expect new doctors to be trash🤷♀️. I’ve had so many just awful, lazy doctors to trust any of them.
@@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.
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.
i think you mean Sjögren's ;)
virrig I do! Thanks! :) will edit
O.o
OmG. Horrified that you were misdiagnosed. Sadly, typical that women are treated as if it's all in their head.
My fatigue was from very low vitamin D :(
I’m sorry that yours is from something much worse 🙁🙁
Omg I hate when doctors refuse to help because there’s no cure. Like... ever hear of symptom management???
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.
@@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. ☀🌈
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.
@@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?
ADAB 🤣
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.
have you done that? i'm just wondering how they responded.
@@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.
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")
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
It’s worked for me!!!
me: *lists my symptoms*
doctors: have you tried ibuprofen?
YES!!! Or maybe if you exercise? So aggravating!!!
That's what a doctor said to my child once after weeks of joint pain. Ugh!
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.
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...
@@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 👏👏👏
Telling people that they’re faking it is literally medicines biggest copout
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.
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.
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.
@@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.
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.
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.
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.
Australian doctors: No. You can't have a referral. We don't have one of those in OUR clinic, so it doesn't exist.
Canadian doctors: you can have a referral, but your specialist is 5 hours away and you'll have to wait 6 months
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.
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.”
"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.
Doctors take turns to deny my headaches fit their specialisation (hydration/nutrition, bloodwork, sports regime, and psychological evaluation beyond whatever neurologist ruled out).
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!
@@ashtaylor4107
Have you looked into intercontinental travel cheaper than you usual medical coverage?
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.
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.
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.
Emily Kinsella Which is hilariously sad- because woman typically have a higher pain tolerance.
@@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.
@@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
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.
“The upswing of every story is ‘and then I met my wife!’”
Why am I crying in the club rn
Wait is that a song reference-
“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.
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.
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
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.
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.
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...
"EDS cant be cured" yeah buddy, neither can rheumatoid arthritis and in this household, we do not devalue anyone's pain!
my rheumy was so weirdly relieved when I went seropositive for RA because it was something he COULD treat. The EDS? Not so much.
Ugh I have juvinile arthritis (why is everything idopathic lol)
Cassandra Music I have JA too (like EVERY single joint in my body is affected), it fucking sucks mate.
The loopy thing is that EDS _is_ treatable. Specific physiotherapy, saline for POTS, braces/splints...
Correctrix EDS has no cure. I have had physio. It did nothing.
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????
Jesus Christ, some doctors shouldn't be doctors
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.
Ugh, I’m sorry you had to go through that. Thank god for your mom, she sounds awesome!
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...
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???
"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.
I hate being misdiagnosed, it’s so confusing...
For real
a haPpy littlE acCident
I've been misdiagnosed so many times, its nowhere near funny.
“A little bit floppy”
- *Jessica 2019*
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
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
And if they are faking it, they still need help because that's not normal.
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.
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!
@@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.)
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!
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.
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!
@@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.
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
Yay! I thought it was just me and my adhd that effected.
The medical world in general sucks when it comes to disabilities. That’s at least my opinion.
Agreed
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.
In Australia we are getting so much better.
“You have something, but I don’t know yet” has been my diagnosis.
Amethyst Moon I mean, they have to start somewhere right?
Gray Glider Girl unfortunately my starting somewhere started when I was 9 years old. I’m in my 30s.
Yup me too
Idk which I hated worse, "idk yet," or "you have X, sucks to be you. "
@Emily Schulte-Slifkin Have you been checked for endometriosis?
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
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.
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.
Yep same.... mood
I was told rheumatologists only treat autoimmune disorders and dismissed.
my brothers a doctor and told me this when i asked if it’d be good for me to see a rheumo 😭
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.
Hecate Lunati Look up the #DoctorsAreDickheads hashtag on Twitter.
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...
This happened to me too :o
I hope you are feeling better by now 💛
@@AishiCheemo thanks ovy! Still chronically ill but it's back to the normal symptoms for me :) the course of antibiotics really helped.
So my 10 year old daughter is home sick and this made her laugh and then her jaw partially dislocated. She also has EDS.
Oh no!! Yeah that is the worst feeling. I hope she gets it back in. :( Stay strong little zebra
aw hopefully it wasn’t too painful popping it back in, what a strong kid you have 💕
I hope when you read this she is feeling better!
this is the most eds thing to ever eds.
I hate it when that happens. Jaw dislocations are the worst.
"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
"You have something, I just don't know what yet."
Fibromyalgia has entered the chat
That was my original diagnosis. Five years later and I finally have a great medical team and a hEDS diagnosis :)
So true 😂 😂
Just @ me next time 😂
My doctor diagnosed me with fibromyalgia, then lyme disease and now she thinks i have problems because of gluten and lactose
@@hannahkistler5322 how to get a great medical team? I'm curious.
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...
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.
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.
I hope you get a new doctor!!
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.
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....
Chocolate button diagnosis sounds adorable, and sad.
This.
I was misdiagnosed! The doctors thought it was stress/allergies turns out it was my kidneys failing! 🤦🏻♀️😩
the first thing they go to is anxiety, and it’s so frustrating bc you don’t get the help you need
My "panic attack" was actually a highly inflamed muscle in my shoulder. It's hard to find doctors that actually listen to you.
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!
Katrina Vernon i’m really happy you’ve been helped into a good place!!
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!
"You're faking it" Yeah...because faking depression is s funny
ha...ha
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.
Damn, reading this really made me tear up. Glad you finally a good doctor who could help you.
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 💗
I'm glad you got the help you needed ❤️
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.
"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?"
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!!!
Life is an incurable disease which is invariably lethal.
Doctors don't know enough about food and nutrition, for example.
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)
@@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.
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!
@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.
@Amanda York my neice had a docter who tlod her that children cant get type 2. My sister changed their gp so fast.
hopefully that doctor never finds out that almost everyone eventually dies.
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!!!
There’s no cure for cancer, but you still treat that.
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?
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-"
I have Type 1 diabetes. Imagine a doctor telling me, "Treatment? Why? There's no cure anyway." Unacceptable.
When you said "hands up if you saw that coming!", I raised my hand so fast I subluxed my shoulder. EDS is super fun!
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.
I love you Jess. It’s ok to be sad about the trampoline. It is sad.
Sees title "oof big mood"
Me: hey I get this extreme pain that comes in spasms throughout the day
Doctor, Mother, everyone else: Sounds like you want attention
"I'm having extreme muscle pains that are lasting longer each time"
"Ah. You seem stressed."
No shit.
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
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
@@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.
**sees title** oh is this when EDS comes into play?
My exact thoughts
SAME
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.
Yeah, I was waiting for the mention of EDS too, but Jessica shouldn't have had to pay £300 for the diagnosis. 😥
@@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
"Trampolines, fun until they snap your ankles"
oml that had me dying
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
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.
That one dislike is ur gp who knew they failed you
Jessica: I'm a bit floppy
Me when I found out when I had a bit of hypermobility: *actual reaction* MOM IM BENDY
I have EDS and my joints are becoming more hypermobile and I literally told my parents "I'm evolving into my final form"
“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 😂
My EDS was "diagnosed" as growing pains for years so I feel your pain (probably literally)
how did they actually finally get diagnosed correctly'
Mine too. Its so frustrating x
Yep same.
I had many of the symptoms individually diagnosed and proof of imaged before i was diagnosed at 31.... even when i was about 95% sure it took me 6years to move towards seeing a geneticist in Ontario, that same day i was diagnosed and told about a few other concerns.
Likewise took till age 40 for diagnosis although things weren't too bad in 20's.
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
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.
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. 💜💜💜
@@lilmissmonsterrr exactly. Its so frustrating when doctors say "oh you have fibro, just exercise and eat healthy" as if its a one-treatment issue.
@@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.
@Erica Sawyer Would you mind saying what country you live in?
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-
Update: Hands were inflammed and bones were thinning. Have been told not to worry about it.
@@octoberna7949 what the fuck??? How is that something not to be worried about?
@@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!
@@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
@@octoberna7949 Jesus, did they ever figure out what was wrong?
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.
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.
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.
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....)
(Not-so) fun fact:
Over 80% of cancer patients get misdiagnosed at least once before getting diagnosed with cancer!
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.
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 .
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.
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.
Wylde Fyre Jesus that’s awful
every time Jessica mentions Claudia
i LoSe My BrEaTh WhEnEvEr i SeE yOu
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.
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.
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.
Wait! We have private clinics? Where?!
@@dragonfox89 you got $200 grand for medical expenses? Nope? Then they are invisible to you 😂😂😂😂😂
Jessica : "I have EDS, who saw that coming ?"
Me : *raising my hand the Hermione Granger way*
Seriously, I'm no doctor, but following two people with EDS (and different ones) on youtube, I thought your symptoms matched perfectly when I first started watching your videos ages ago.... Now somehow it makes sense ! ^^
Having a good doctor and health care around you is the best. Always trust your gut when you see something is out of the ordinary (especially when your ordinary is already being sick - thank you chronic disease).
Story time : I have UC. When you get gastroenteritis, it makes things really bad. One night in 2015, I started getting pretty sick. I thought "I must have gastroenteritis, I'll just go to bed and call the doctor in the morning" cause all I wanted to do was sleep because of the exhaustion. I did. Not the way I planned. I woke up at 5 am, paralized in my bed. I reached for my phone and called directly for an ambulance. I knew something was wrong. I felt really bad. There is no words to explain the feeling I had. Turns out, I was doing a sepsis. After two days in the emergency room, fighting against it... I died. My heart stopped the fight. They tried to reanimate me. My heart didn't want to do his job anymore. They linked me to a machine to do the work of my heart : pumping my blood to my organs so my body would still work. Then, they called my parents : "your daughter is going to die by the end of the day, if you want to see her one last time, you have to come now". I was 21.
Guess what, I survived. I got lucky. A miracle, they said. And I learned my lesson : when things are not normal, not making sense, I call the emergency number right away.
Jessica, I'm so glad you finally got a proper diagnosis. I'm so glad you have Claudia in your life. I'm so glad you chose humor (and the vintage sass !) but also a good cry once in a while is perfectly fine. We keep fighting. Our own way. Always. Cause I ain't dying today. Nor tomorrow. But if I do, I want you to know, whoever is reading this : you're amazing, taking care of you is the right thing to do. Reach for help. Get good people around you. Cry a lot. Smile a lot. Laugh a lot. Enjoy the good and the bad. Embrace life. It's yours and you've only got one.
I am extremely glad that you are alive!
Your story is quite touching, thanks for sharing! I also know the struggle deciding between sleep and the emergency room. I will keep your story in mind.
I'm so confused because I thought I learned about EDS from this channel :p I could have sworn we already knew this about her. Doesn't she also have POTS? Am I living the Mandela affect right now?
Your story is amazing. I’m so glad you’re alive to tell it.
Edit: I made it the correct form of you’re. I hate that I made that mistake.
I remember watching that video, and forgetting the acronym, thinking I re-remembered it was eds, watching the video again and realizing that is not what she said (in that video, she obviously said it in this one). I think because I knew a little bit about EDS when I watched her videos describing her disabilities, her symptoms just seemed to fit so my brain auto filled it in. Also shes had videos in the past about doctors not taking her seriously and not diagnosing her correctly. Maybe that's what you are remembering, maybe it is the Mandela effect.
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....
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.
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
"And they can't ball themselves up into a kitchen cupboard while playing hide and go seek.... Madness"
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!
I fit in... but then someone better find me, because too many things dislocate and I get stuck in the cupboard indefinitely without help
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.
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
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.
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. 🤞
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. 😣
@@LifeinBonnieland I got sent to so many psychiatrists because of my illness being invisible.... They think you are crazy.
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.
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...
@@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!
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....😓😓😓
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!
@@carollynnhall1705 Yeah, my hamstrings are made of steel because my hips and knees are freeloaders...lol.
Simon and Martina and Jessica need to team up and talk about their struggles with EDS and Doctors together
Yes!
I approve this message
As soon as she talked about dislocations, the first thing I thought of was Martina and her story of living with EDS!
Yes ❗
add Stevie Boebi to the list!
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!
NiaJustNia that opening line made me chuckle 😂 glad you are seeing better docs and finding ways to navigate life!
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?!?
@@Cara-39 I was absolutely stunned honestly. I've refused to see him since and switch GP
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.
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!
I’m going thru the same,
in the same boat! hoping for answers, but I'm also cool with not spending all my money on drs who shrug and dismiss.
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!
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 💗
How are you doing now
According to captions, it's Ellis Tan Loss Syndrome. Poor Ellis!
Misdiagnosis always feels like a betrayal, by both drs and, in a way, of/to yourself
I normally hate adverts, but when they pop up in Jessica’s adverts I’m pleased because they are supporting her!
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.
i feel like looking into the camera like im in the office every time this happens
Anonymous how did you perfect encapsulate that feeling???
@@annonimooseq1246 Talent
Wtf how could a symptom not have a cause!? Isn't that what a symptom is? Something CAUSED by a bigger issue?
@@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".
“There was a lot of crying” wow what a mood
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.
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.
This whole time I actually thought that she knew she had EDS😂
Nope! Before this video she had another talking about a *list* of diagnosis
Me too
Me too!! Zebra myself 😊
My wife has Severe EDS and the whole time we’ve been watching you the past couple of years we’ve been convinced you had EDS too! She has HEDS with MP! She’s incredible and the fact you have EDS, are a married gay woman and have a hearing impairment is amazing because Leigh is SO SIMILAR! You’re just awesome and I am so glad you’ve finally been diagnosed with the right thing!
Though, no dr knows what it is or thinks it’s psychological or you’re faking :/ there’s hardly anyone that knows what to do with you and even if they do there’s not much they can help with :( best of luck to you!
p.s. we live in eastleigh and loved your photo on the band stand
Ive wondered if it was EDS too, or something similar. By the way, I have NO medical training in the slightest or know anyone with this condition.... not trying to blow my own trumpet of course just highlighting the importance of listening without judgment. I love your spontanious comment about your wife "shes incredible". Beautiful ❤❤❤
Shayne Ashley this made me smile :”) she really is. Shes the strongest person I know. We are inseparable, the most in love couple ever and have only ever had one argument (over croissants!). She has multiple organ failure, loads of co-morbidities/disabilities, has nurses coming 3 times a day and is in hospital a lot. She can’t eat and anything she drinks is drained back out into a bag. She’s on TPN. I’m chronically ill too, but don’t have EDS, I have a couple of things that Jessica also has, we have a live-in carer and are both wheelchair users! Leigh is absolutely incredible honestly and the most hilarious person ever. She’s the sweetest cutest most kind being and I literally could not love her more!!!😭💓
@@PollyRizzleKicks your response brought tears to my eyes. How you talk about your wife is the sweetest! And an argument over croisants! Must have been serious! 😅 May your pastries always be perfect. Hugs to you both from Australia 🌸🌸🌸
Awe hi friend! 💕 love you guys💕😘
elizabeth H hiii! We love you too😍💓
"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.)
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.
what is it with people and assuming your faking being ill?
I always say that actually I'm faking being well.
Humans. We like to fuck shit up.
@@jodieweiss8774 that's a good one. Stealing it.
I can’t miss a day of school without my friend saying I was faking it
@@ehbepbepbepbepbepbep1066 your friend doesn't sound very nice.
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.
I lack the spoons to type a longer response that really expresses how I feel about so I will just say HUGS. so relatable and congrats
Spoons!
this video makes me want to cry. I share 90% symptom overlap with you, including the ability to bend my thumb down like that, and I laughed when you said "very few people can do this" and then I did it - and I am still undiagnosed. I went to a doctor about two weeks ago who took down all my information, examined me, and then said I didn't need to be treated because my "pain resolves itself" (because my pain comes in bursts of hours where it cripples me for hours and leaves me unable to have a job or go to school or do anything for myself for hours, but it does eventually go away on its own - and then come back again whenever it pleases). he basically said to come back when or if it gets worse. I've also had doctors tell me before that my fainting was either faked/from being overwhelmed by my feminine emotions
Tanisha Applin thats terrible, I hope you can find a new doctor, ask for a second opinion. Also if you have similar EDS symptoms and syncope you could look up POTS as it’s a very common co-morbid condition with EDS and might explain the fainting (and is fairly easy to prove that it’s not psych related). Best of luck, from someone who has EDS and POTS
@@halfcockedbird I believe I may have POTS, but I've never had proper diagnosis. I was also looking up EDS and I measured my arms (because one of the requirements, as she was saying, is the arm span longer than your height) and I meet a lot of the requirements for EDS as well. So hopefully I can get tested for that soon
Tanisha Applin just so you know, the armspan thing is only a diagnostic criteria for marfan's, not for EDS itself. So even if your arms aren't in that ratio you can still have EDS. I recommend checking out the ehlers danlos society website, they have a lot of great info as well as the full diagnostic criteria that were updated in 2017.
Tanisha Applin also I will say that as someone in the US, getting an EDS dx can be bizarrely complicated, bc it's a multisystem disease so no one specialty will cover it, and a majority of rheumatologists will test you, say "it's not autoimmune" and them send you away because it's no longer their specialty. I'm currently at "joint hypermobility syndrome, suspects EDS" which isn't perfect but has allowed me to obtain physical therapy which has made the most difference. I think there was a survey done a little while back that found that the average length of time between first seeing a doctor for symptoms and when folks finally got a diagnosis was something in the range of 5-7 years. I think it's getting a little better as awareness increases, but keep that in mind, and just keep trying!
You’re allowed to be upset that you can’t do what others take for granted xo
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!
Print out the criteria off of the eds society website so you can bring to him
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. 😁
Wait, that’s not a normal thing? ...... *tried & successfully did both of Jess’s “party tricks”.....
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.
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....
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.
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. :/
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.
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
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
Truly, Thank you I didn't even know that was a thing!
Heyo! I have chronic Idopathic Angioedema so similar!!
I have no actual diagnosis for anything I have, and the rare occasions I ask for referrals for diagnosis the response was "No, it won't change anything".
Binkenstein demand one and don’t give up until you get one. if your firm and don’t give into the DR you’ll hopefully get it.
If you can get the money for a private consultation that could be worthwhile. I know it's expensive, but you deserve to know what you're suffering with.
The fact that NHS doctors are so unwilling to even refer people is horrible and so common ugh
Cleo Nibbles same in Sweden... 😒
I think it’s because the NHS is under so much pressure along with underfunding. 😅
Same in the US. I've heard it happens in Australia too. Seems to be a problem all over the world apparently.
I had to become serverly suicidal in order to see a psychiatrist, who was then able to formally diagnose my autism...
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
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.
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
I have Osteogenesis Imperfecta and my arm span is longer than my height and it’s my third favorite thing about me
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.
Tsundere Child : "mast cell fuckery"....love it, only those experiencing it could really be amused and comforted....TY!
@@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. 🤞🤞🤞
Same
When I was a baby I cried for months straight, the doctor thought my parents had hurt me, I was just really badly lactose intolerant and I constantly had a stomach ache
@@tahneeedwards9139 yeah our doctor was the same, I'm not lactose intolerant anymore (thank god, my favourite food is cheese) but I was lactose intolerant from my birth and it was only figured out when I was 9 or 10 months old when my parents went to a different doctor who figured it out.
@@tahneeedwards9139 there's actually a bacterial enzyme that breaks down the casein protein, but instead of making lacteze-like pills the food companies are just... out there putting casein in "dairy free" cheese.
bring on the cyberpunk food printers
That’s called colic lol
Same with my niece. She cried a lot and suffered.
So many people believe colic is normal and its not. There is a reason why the baby is non stop crying.
As an adult with EDS and a vitamin D3 deficiency... I miss dancing. I'm so broken.
I feel you, Jess.
I have autoimmune disease, and it's definitely no man's land still. It's frustrating and then you just assume most things are the autoimmune disease, but then they aren't. It sucks.
Mindy Paige a walk through Torah I can hardly recommend you to check out the medical medium protocol! It already helped so many people cure their autoimmune disease
@@veramesserli4199 Isn't the whole part of Autoimmune Diseases is that it's incurable?
@@allisonyoung9371 depends ; there's actually been huge strides in treating arthritis, psoriasis and alopecia with JAK inhibitors
I was actually under the impression that you were already diagnosed with EDS for some reason. So happy for you, Jessica! You deserve the best care out there.
Also, trampolines: really not that great
Me too! Whenever she talked about floppiness and dislocations and such I figured it was her EDS that apparently no doctor had bothered to tell her she had.
Same (like everyone else?) haha anyway glad you have a concise dx now jess!
I have a TH-cam 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.
I have hEDS as well! In the US and it took 18 years from the onset of my symptoms to get the right diagnosis. I had to travel across half the country to go to the Mayo clinic as well. You're absolutely right, the diagnosis makes a huge difference in how serious doctors and nurses take you and the level of care you get. So glad you're getting what you need now. ♥️
Mayo is one of the greatest places on the planet.
my chiropractor thinks i have eds. im 19 and my quality of life is abysmal. i'm seriously considering going privately because no doctor ive talked to about my pain, hypermobility, and other symptoms has taken me seriously. this video has really helped me; thank you.
i'm so happy to hear that you've got a proper diagnosis jessica!
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.
I literally had to fight a doctor when my mom was trying to get treatment for rhumatoid arthritis... They wrote her off as someone looking for opioids, maybe because she's a woman of color of maybe because the US caused and opioid issue. But I was so pissed
Sue.
Probably because she is a woman, also because she is a person of colour, even worse if she is young or elderly.
Drs are trying so hard to not dole out painkillers to people with addiction problems that they are refusing to give appropriate pain relief to a lot of people who need it for a chronic condition.
I used to get kidney stones but as I a young white woman, was not in the most popular/ "correct" demographic, so was dismissed as mentally unwell or a drug seeker. Treatment for either supposed alternative conditions was never suggested or applied. Add in assumptions that of course I would just be a wimpy dramatic person due to my age & sex, I was refused medication, made to jump through unnessisary hoops & made to wait much longer than it needed to be. I imagine it would have been worse was I was person of colour but I do live in the UK so we are less racist than the US. Also some people are trying so hard to be PC that they actually pay more attention if you are in a minority like race, sexuality, gender etc, I admit being in a wheelchair has made some medical professionals prioritize me.
I feel so bad that you were misdiagnosed. Sounds awful. Also you're amazing and beautiful and a gem
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.
I love that everything was worded so technical, then comes along "weird heart thing"
You know something is wrong with the system when you hope for a 'popular' disease. Before being diagnosed with multiple sclerosis last year, I was praying it wasn't ME/CFS; not because it is worse than MS, but because I knew more people would understand (or would have at least heard of) MS and hopefully not assume I was 'faking' it. I'm glad you're getting better care now Jessica, I admit I guessed EDS when I first saw you mention floppy limbs, but I'm not a doctor so assumed I was just pulling that out of the air. Looking forward to seeing the mobility aid unboxing, I can't tell you how useful that series has been as I've been looking for one for my bad days too
Yes! Totally relate. Everyone understands my cancer thankfully but the other obscure diseases are too complicated and I don’t talk about them. Lupus is confusing but my weirdest issue is my digestive system is paralyzed top to bottom and I’m going in for a iliostomy surgery to bypass the GI system and come out with a colostomy bag, not something talked about. So yeah I embrace cancer because it’s supported way more than migraines, lupus, and gastroparesis, etc. yeah we’re not faking these horrible obscure diseases, they’re not terribly sexy.
Layer Cake Arts you should look up a healer in your area! You can get through this! Good luck!(: as for the rest, you can help educate people on the matter, but good luck with all that, kind regards/good wishes (:
Same .. she mentioned that and I immediately went to EDS
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!
I, also, was going to mention Martina! 👍
I've been bedbound for over a year with heart issues and orthostatic intolerance and my doctors have just been writing it off as anxiety. I called an ambulance a month ago cause they didn't give me a doctors appointment for a month later and it turns out I have an irregular heartbeat and it could be related to dysautonomia AND there is medication for it. So I've been referred to a specialist and now I'm very patiently waiting for my appointment.
YOU GO QUEEN!
Sue.
@@KakeKittyStyle If only it were that easy.
I hope you get the diagnosis you deserve & are able to try different treatments, including medication, to lessen your symptoms.
Too many Potsies have been dismissed as having anxiety or psychological issues & their physical symptoms have been ignored. Also it's like drs don't know if is possible to have a mental health condition & a physical condition, my sister has anxiety & pots & eds. The stress of your body being out of control & drs not listening is going to worsen anyone's anxiety, it is not a blanket explanation for all symptoms!
I have dysautonomia too, and I'm afraid doctors cannot help. Recovery is totally possible though, through nervous system rehab and brain training. Check out the Curable app and Facebook forum. It is often the result of trauma or great stress, so those things need addressing too.