There are no doctors with availability around me 4 plus hours out. my mom is diagnosed. i have all the symptoms. yet no doctor will diagnose me, and im in limbo and im in so much pain everyday. i had a big surgery 2 years ago and my life flipped and i havent been the same.
@Emily7778
5 ай бұрын
Its so difficult. I finally found a doctor who will see me and my appointment was scheduled 8 months out 🙃
@GizmoGremlinDog
4 ай бұрын
I asked my GP about EDS as myself, my daughter and son have symptoms. She asked "what's that?" So I'm pretty much screwed if this is what we have
@ascargot
4 ай бұрын
Same with me. I live in Ontario and apparently the only ones that can diagnose are the doctor of the Ehlers-Danlos Clinic i Toronto, with a wait list of 2.5 years.
@skyefirenails
3 ай бұрын
I live in Texas and just got diagnosed after searching the state for 5+ years for a doctor who could help me. Even though it's not a rheumatological condition, my local rheumatologist is familiar with it because his son has it, so he's treating me now. But I totally understand. It's been hell.
@nichole634
3 ай бұрын
My primary doctor referred me to a geneticist who sent me the genetic testing kit from invitae in the mail. Everything was Teledoc / phone conversations aside from the cheek swab at home.
@Fuphyter
2 ай бұрын
I'm 66, my daughter was diagnosed a few years ago. I had health issues my whole life. I used to bend my thumb to freak out friends when I was a kid. A doc kept me out of gym from 7th thru graduation! That never happens. I had major knee surgery at 19. Right now, I need bilateral reverse shoulder replacement, knee replacement and my spinevis bad. My joints are full of arthritis, spurs, blown clavicles and one rotator cuff is almost gone. I hemmoraged after delivering 3 kids. Had to have a hysterectomy at 38!! Prolapsed bladder and uterus. I finally found a specialist an hour away. I'm so anxious to speak to him.
@DMAC1301
25 күн бұрын
This sounds like my life. Why has no dr ever checked for this. Sometimes I’m treated like I’m a crazy person.
@Fuphyter
24 күн бұрын
@@DMAC1301 A lot of doctors don't know about it. I've been asking around. I had to find a genetecist over an hour away. I DO have hypermobile Ehlers Danlose. Nice to finally have an answer.
@SaritaAgerman
Ай бұрын
I also LOVE that you called it a "poly pocket" - I live in England now and no one uses that phrase here except me.
@shannongreenwell1278
5 ай бұрын
Awesome job on explaining EDS! Keep up the great work! I have Classical EDS and not many physicians have an inkling of a clue what it is! Which means going to hospital for a EDS patient is very difficult and scary! Luckily my Neurologist’s office is very familiar with EDS and POTS, which I have. I have GERD AND PCOS. Along with Migraines and CCI( I sleep with a CCollar on at night). I could do these things as a child and young adult and a teenager, but due to a fatal car accident that killed my mother and mangled me I am unable to do much of anything at the moment. I am still very hyper mobile however! Especially in my arms and knees and the tops of my feet’s. .
@Fuphyter
2 ай бұрын
I was in the hospital last weekend. My neck was shooting pain into my head that was unbearable. Not one person heard of EDS.
@esotericfool4566
Ай бұрын
My mom was diagnosed with ED probably about 15 years ago multiple surgeries even before that and after and unfortunately, she suffered a massive brain aneurysm, which I guess is part of the vascular system which could’ve been infected by the ED. I’m not sure it’s all too new right now, but my brother and I now have to get screened for potential aneurysms as my mother had three in her brain. It only took one to kill her devastating loss. Miss her forever.
@faree38green
Жыл бұрын
Excellent presentation re Ehlers Danlos
@RhesusMedicine
Жыл бұрын
Thank you!
@19HuskyWolf70
4 ай бұрын
My girlfriend is struggling with EDS life, she can't sleep 4 hrs on average a night, can't eat. Doctors in Michigan have no clue. She also is dealing with MCAS
@CrazyEightyEights
2 ай бұрын
Two Tylenol PM for me every night near 8 PM and sometimes I still need more help. Black out shades, drapes, and no electronic lights at all help.
@teodorstefanov984
Ай бұрын
How on earth to cure this????? Tell me ?
@CrazyEightyEights
Ай бұрын
@19HuskyWolf70 Sleep is crucial to health. There is a discipline about good sleep hygiene. No screen after 10 pm. In the bedroom: no light, no sound, no companion. I take 2 Tylenol PM at 8, and sometimes, even that is not enough.
@dvf4550
Ай бұрын
@@teodorstefanov984 Unfortunately there is no cure. Focus is on management. God bless.
@teodorstefanov984
Ай бұрын
@@dvf4550 what includes management?
@DMAC1301
25 күн бұрын
This is me. To think all of these years I’ve been telling my drs and nobody I mean not one put these together. It’s always the going joke, how at my age I can bend the way I do.
@evelynmontez3565
Күн бұрын
Yes! I felt proud of it😅
@dr.moustafaibrahim6810
3 ай бұрын
My wife applied for divorce after she got to know that's no cure for me and she left me suffering by myself in New York hospitals cuz I have EDS
@Fuphyter
2 ай бұрын
I'm so very sorry. She sounds like my ex. He hated me for being sick all the time. I didn't know it was EDS until my daughter was diagnosed a few years back. I almost died from sepsis and he never visited!! Your wife and my ex should go on a date. Lol ❤❤
@setapartforHim
2 ай бұрын
And they will both reap what they sowed. In sickness and in health is what they vowed and broke it. Its very sad. I hope and pray that you both get the help and support you deserve.
@tessaelisabeth7393
5 ай бұрын
I was diagnosed with EDS recently. It impacts my entire body. Does anyone have severe tummy problems from it? I am looking for another doctor bc they think I have something else (POTS)
@shannongreenwell1278
5 ай бұрын
I have GERD due to my EDS and I have POTS, too. I have cEDS.
@liliumdahlia
4 ай бұрын
I have irritable bowl syndrome and a prolapsed pelvic floor
@anntunaley9974
4 ай бұрын
U most likely have gastroparesis. Most of us with EDS do.
@RianaLittle
4 ай бұрын
I have terrible stomach issues. Pain. It feels as though I can feel my food moving through my intestines and it’s just pain. Makes it hard to eat at all. I have no idea how to deal with it.
@Baragaki_Lily
3 ай бұрын
I have POTS, fibro and now possibly this EDS' thing- before all the watchamatchacallit diagnosis- my tummy has suffered the horrors™ since i was born into this wasteland. A lot of puke and sh❤t in my life until I ended up malnourished in 2019 and in 2020 when i almost threw up my gut out of my useless body the doctors took me seriously- and treated me accordingly- After 2 and a half years of eating tasteless stuff now i'm okay and not actively dying (fat and happy or so they say). They told me at that time i had irritable bowel syndrome but now i know it was related to the illness i've mentioned at the start of this rant, it sucks! It really does! I can't remember how cheese or french fries taste like but i can eat Oreos and drink vegan strawberry milk to my ❤'s content so it's okay . Now i'm fully experiencing chronic pain, fainting at least twice a week but without sh❤tting myself to death so it is an improvement! 🎉🎉🎉
@dvf4550
Ай бұрын
I have muscle spasms throughout my body from it. Doctor prescribed a med often also used for Parkinson's so i can sleep at night.
@JS_bioclasses12
Жыл бұрын
Nicely explained
@RhesusMedicine
Жыл бұрын
Thanks 🙂
@waelfadlallah8939
Жыл бұрын
Thank you 😊
@RhesusMedicine
Жыл бұрын
You're welcome 😊
@SusanSimms-o6j
3 ай бұрын
Plus Cranial Istability, and Occult Tethered Cord..
@chainsgirl73
22 күн бұрын
What kind of doctor will diagnose this?
@dawnshort36
Ай бұрын
Took them from the age of 9 and I’m now 24 to find out I have elder Danols syndrome I don’t know whether I should be pissed or relieved to find out
@alejandropower
2 ай бұрын
People diagnosed with EDS... how did you get the diagnosis? What were you going through? What kind of symptoms? Because I can make my thumb touch my forearm, but, it's that a key symptom of ehlers danlos? I also have a mitral valve prolapse. So do I have it?
@baileymiller4044
Ай бұрын
I don’t have stretchy skin but like everything else. My doctors don’t want to test me because I don’t have stretchy skin
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