So about a month ago my GP agreed with me that I needed to see a rheumatologist about the benign joint hypermobility syndrome diagnosis, to confirm whether or not for my own sanity if it was hypermobile EDS or hypermobility spectrum disorder. I don't know which resources I can send to my employer on which problem I have so they will modify my desk etc and I don't know what to tell hospitals when I have fallen over and screwed a joint up, and when I go on holiday particularly on long haul exotic destinations getting insurance is getting harder with the whole mysterious lung problems and allergy problems and PoTS and this. So they have written me a letter to get referred to someone else other than my local hospital.
There was talk of one of the rheumatology doctors at my surgery referring and overriding the hospital and sending me back to rheumatology for re-evaluation but I don't think that is going to happen now. So I still have my letter to send to the private hypermobility specialists and was going to do that.
I know that Dr Hakim is on a sabbatical, so my question really is, who else have you guys seen who didn't laugh at your concerns. And how did you get an appointment? I still have my letter, it's a bit old now but what with the confusion with my local hospital rheumatology department and my GP and I kept delaying sending it hoping my local rheumatology department would help me but they didn't, so hopefully, they will still accept it if I explain the circumstances surrounding it and the confusion that's been going on in my local hospital trust.
They lost my cardiology results for like 3 months so it's that kind of situation. Anyway, any advice on what to do would be appreciated. It has my medical notes on it from my Doctor and it is still a valid letter, they can ring and ask them if they like.
So anyway I hope that little rant made sense and any advice would be greatly appreciated.
Written by
emilyhedgehog
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Your GP, or the rheumatology GP at your surgery can use this toolkit to diagnose you themselves, there should be no need to have to go private anymore.
One of the problems in this country is that GPs refer people to rheumatologists who are not really the right people to be dealing with EDS, in other countries you get referred to genetics, because it is a genetic disorder that affects the whole body, every body system, not just the joints. But here in the UK we have this 'tradition' of using rheumatologists which often doesn't work out so well for the patients.
The toolkit was developed by a GP who has EDS herself. She found that there were no rheumatologists in her area that could deal with EDS, and yet every 18th patient that came to see her had some indication that they might have EDS. So she got together with various doctors and researchers and the RCGP and wrote the toolkit so that GPs can now diagnose their own patients without having to send them off to a rheumatologist who might actually know less about EDS than the GP does!
So maybe you could make a double appointment either with your own GP or the rheumy GP, take the URL and maybe print off the tick box page with it already filled in, and see if you can get the diagnosis that way. It will be cheaper, and you won't have to wait so long.
Hiya, I'm glad my little rant made sense the longer
I knew about the toolkit and thank you, you linked me to it another of my posts on it. I did take it to my doctor and they said they couldn't diagnose it as they didn't feel comfortable diagnosing it.
Hence why I got the letter to the private consultants. I feel like my local doctors have essentially washed their hands of the whole thing. I sent the letter of to the hypermobily centre? in london with whats been going, and I am waiting for a response. If that doesn't work I will make an appointment with the rhuemy doctor with the ticksheet again and see what he suggests. I actually might make an appointment today because I am not hopeful.
I have posted this on the ehlers danlos subreddit and someone who replied said that doctors are getting less likely to diagnose particularly hypermobile eds because its now trendy. Which is totally riduculous just because more people have heard about it and suddenly have a lightbulb moment.
I hav the same and my cardiologist doesn’t believe in POTS!! So I’m having a heart scan just in case but only because the geneticist recommended it. A geneticist confirmed my EDS not a rhemotologist ask to be referred to one
Hello, I did send my information off to the london hypermobility clinic where it was passed to a geneticist affiliated with them. He read my info and within two days I had an appointment for the friday of that week.
He was super nice and listened to all the weird stuff that was going on and believed me when I said I was 7 I started getting stretch marks etc. He diagnosed hEDS in that appointment and sent a letter with me to my GP and now I have some more referrals for some other issues. Its all good.
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