joint issues plz help Watch

alyssajade23_xo
Badges: 9
Rep:
?
#1
Report Thread starter 1 week ago
#1
So I'm now 15 and since I can remember I've had joint issues. I know ehlers-danlos runs in my family and I know I meet the new diagnosis requirements but upon sending some emails to eds uk and similar I was told that the only way to be diagnosed is via a private pediatric specialist in harley street??? surely this is bs and a rheumatologist can??i have been referred to rheumatologist. dose anyone know or have any suggestions as gp said there is clearly an issue and I do not want to be undiagnosed for years like some of my family members have
0
reply
Surnia
Badges: 14
Rep:
?
#2
Report 1 week ago
#2
Hi, sorry to hear this. It must be a worry when you know there's a possibility of being diagnosed with something specific.

This is a direct quote from the NHS website: "Your GP may refer you to a joint specialist (rheumatologist) if you have problems with your joints and they suspect EDS."

So don't worry about EDS uk. Your GP is on the ball with this by referring you to a specialist. Hope this helps put your mind at ease until you have your appointment!
0
reply
nexttime
Badges: 22
Rep:
?
#3
Report 1 week ago
#3
(Original post by alyssajade23_xo)
...but upon sending some emails to eds uk and similar I was told that the only way to be diagnosed is via a private pediatric specialist in harley street???
That sounds extremely dodgy and very unethical. There is already a massive problem with private clinics over-diagnosing EDS - people essentially paying for a diagnosis - but to know that EDS UK are in on it as well? So are they getting paid too?!

Ignore them because I genuinely think they may be corrupt. A lot of private medicine is. Let your GP handle it and completely honest about your symptoms and see what they can do.
0
reply
Pathway
Badges: 20
Rep:
?
#4
Report 1 week ago
#4
Well...I mean, I got diagnosed in 2012 with EDS by a rheumatologist (and was offered genetic testing, which apparently they don't do very often (?), but I declined as I didn't see the point back then [lol naive kid I was]), I didn't need to go private (I was 17 when we started looking into figuring out what was wrong, and 18 by the end of that bit). I doubt that'd be different now? Idk...that sounds weird coming from EDS UK. Especially as they did all that work with the EDS specialist nurse up at UCLH literally this month and what Dr. Emma Reinhold has done with RCGP last year. I know the rheumatologist who diagnosed me knew Dr. Rodney Grahame as well.

Idk man this is weird, lol.
Last edited by Pathway; 1 week ago
0
reply
X

Quick Reply

Attached files
Write a reply...
Reply
new posts

All the exam results help you need

2,452

people online now

225,530

students helped last year
Latest
My Feed

See more of what you like on
The Student Room

You can personalise what you see on TSR. Tell us a little about yourself to get started.

Personalise

How are you feeling about GCSE Results Day?

Hopeful (209)
12.75%
Excited (146)
8.91%
Worried (296)
18.06%
Terrified (370)
22.57%
Meh (151)
9.21%
Confused (36)
2.2%
Putting on a brave face (224)
13.67%
Impatient (207)
12.63%

Watched Threads

View All