Struggling to get a diagnosis for EDS

I can't recommend a doctor because I'm in the United States. But it took 10 years of misdiagnosis.

I got diagnosed when I was 16. A lot of doctors don’t know much about it.

Hi there. I’m not 100% sure if he is still practicing but I highly recommend Prof Rodney Grahame, he’s fantastic and specialising in hypermobility and connective tissue disorders. On the other hand, stay far far away from spire healthcare and particularly stay away from Dr Jan Reiser, he’s one of those who witch hunts EDS and then diagnoses FII/munchausens. It took me 6 years from most symptoms appearing before getting diagnosed privately but I’d had symptoms relating to my joints all of my life, and it took my mum 45 years to get diagnosed and she only got diagnosed then because I did. Good luck! I’m open to messages if I can help in any way ☺️

I’m not in the area, but it took about two months to see a specialist because there was some mix ups. Then she said in the PT referral that hEDS was possible (I forgot to mention like half my symptoms too), but I don’t start PT till February so it’s been like five months total of waiting.

It was about 2.5 years since I first suspected it. My PCP didn't know much about it, the first rheumatologist said it's normal to be hypermobile but he didnt know why I was in pain (and dismissed the idea of a connective tissue disease), but I specifically told the second rheumatologist that I suspected a connective tissue disease and then got dxed.

I’ve had the same problem with doctors! I’ve had one GP listen to me, but the rheumatologist she referred me to didn’t want to entertain it 🥲 I recently moved to the south-west so if you get any good advice I’d love to hear it ✨

I've had symptoms my whole life and have always been super flexible with lots of random pain - everyone always told me it was growing pains when I was younger until my m suggested eds at 15yrs, took 3 years to get a diagnosis of Heds but now they're thinking classical eds. Either way the one who finally got the ball rolling was a rheumatologist so ask specifically for a referral and if they refuse state that you'd like their refusal noted down

For me I’m 18 now and have been symptomatic my whole life but slowly got super bad and my doctor sent me too a geneticist after figuring it out himself and I got an official diagnosis at 13 (I have two types) one by blood and one by physical symptoms. Takes longer if you not super symptomatic considering it’s very symptom based and (hEDS) and there are other things it could be that sometimes make more sense ( there’s a lot more symptoms then people think ) good luck love hope you figure things out!!💗

that's intesting! I've never thought of that. Do they have a list of docs per region?

It took me about a year once I suspected that was what was going on. The first doctor diagnosed me with HSD and when I went for him to look again, he maintained the HSD diagnosis. I ended up going on the EDS society website and finding one of their recommended doctors.

It took me 10 years of actively seeking some sort of diagnosis to receive a diagnosis for EDS, although I’ve always displayed symptoms of hypermobility (was a gymnast/ dancer) I saw just about every specialist there is. I switched primary doctors and she thought of it but didn’t know much and recommended a specialist. I got lucky and found a pain specialist with a interest in genetic disorders.

Hello, I ended up putting the pieces together and then reaching out to an EDS specialist in the Oxford area privately myself to gain my diagnosis as I was in the same never ending loop with my GP and doctors. Drop me a message and I can send some links over that I used (although a few might be different now as this was a few years ago, but I'm happy to go through the motions with you to find one in your area!)

I can't give doctor recommendations since I'm not in ur area but I'm 19 and have been symptomatic all of my life with proof that it is genetic in my family. It took until I was 14 for a proper diagnosis. If a doctor says that you are exaggerating pain you aren't. You will get through and someone will recognize it's eds eventually stay strong