Dr Ahmed
Region: GB
Thursday 28 May 2026 17:17:30 GMT
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Hope :
Don’t tell us TELL THE DOCTORS!!!!
2026-06-29 23:36:26
300
Emma 💕 :
Given up. Rheumatologist refused my referral said it’s fibro or could be ehlers danlos but that was it 🤷♀️
2026-06-12 21:53:19
22
Nutty snail :
You need to tell all GPs the importance of
2026-05-28 17:23:02
266
Talibombz :
I saw a rheumatologist who confirmed i have eds but refused to record it "its pointless, there's no real treatment for it"
2026-05-28 19:51:02
50
Abby :
Does anyone know anyone that will diagnose in the Chicago area? I’ve called so many hospitals and no luck
2026-08-09 04:35:23
0
Joana :
Can you be my GP? Since my diagnosis I’ve had no support. Been given pregabalin and a good luck.
2026-07-20 10:25:41
8
Lou C-F ❤️ :
Rheumatology won't accept any referrals unless it's for arthritis and there's a blood test proving it
2026-07-06 23:05:28
9
Feral Angel :
except the most important bit...it's impossible to get a diagnosis, anywhere in the NHS, I've been a wheelchair user for 4 years and still don't have a diagnosis on why either.
2026-07-06 13:57:10
20
Gemma :
I got told I had hEds when I was getting other things done and checked by a bone and joint specialist,he told my GP, and told me to too. But my GP refused to put it on my permanent record. I spoke to them about it all and just got told " you aren't an athlete there's no point officially diagnosing that you have it, even though you have all the markers - there's no cure" 🤦🏻♀️
2026-06-30 00:12:38
6
compassionaterhubarb :
GP said they can’t diagnose they need to send me to rheumatologist, rheumatologist said “I don’t know why they’ve sent you here, I can’t do anything” so now I’m stuck and I don’t know what I’m supposed do next
2026-07-06 17:00:13
9
Rosko :
Rheumatology don’t want to know. Even when we’re diagnosed we get a leaflet and told do some light exercise good bye
2026-05-29 09:22:31
18
Kirsti Wilson :
This - my gp referred me to genetics and rheumatology and both said not to seeing me and to refer me to a physio (which she did) and the pain clinic. NHS don’t seem to realise the impact this could have long term and how I could cost them more if it’s not diagnosed early. Luckily physio did Beighton test and it’s now recorded on my notes as being HEDS but that’s because I am lucky enough to have a good gp and physio
2026-05-28 23:00:46
32
Nicole :
Please tell this to your colleagues. My GP tried to refer me for diagnosis, but the specialist declined to see me instructed my GP to treat my pain as necessary! Now what do I do??
2026-05-29 19:08:43
10
Lucy Little :
This is all well and good, but after years of living with horrendous pain and being fobbed off by GPs and Rheumatologists before finally getting my hEDS diagnosis…now living with multiple co-morbidities caused by my hEDS, I’m still fighting with GPs when I present with symptoms of these common co-morbidities related to hEDS and being told it’s ’just reflux’, ‘there’s not much we can do’, ‘your bloods have come back fine’ etc etc! If GPs actually listened to us, we are the ones who know more about our condition and our body than anyone else!
2026-05-29 19:45:15
5
Natasha Mead :
My little boy got referred to physio for his hyper mobility to which we were offered an online course where I was told that hyper mobility isn’t really a condition and that he needs to exercise more 😂 As someone who has HEDS I was shocked at what I was hearing.
2026-05-28 18:29:53
9
Kerry :
How can I get a diagnosis if I can’t get a referral?
2026-05-28 19:48:16
7
justanaveragewomen :
My gp refered me to rhuemetology and it was rejected and told it could be diagnosed in a clinical setting what do I do. I have multi system issues that nobody is giving me the answer to 😔
2026-05-29 20:32:49
10
ZowieBowie 🇬🇧 :
@ZowieBowie 🇬🇧: I just wish that GPs weren’t so dismissive of this condition. My daughter is now 26 and she’s never been taken seriously. She’s so young but her body hurts like an elderly person. Yes, there’s no treatment, but a diagnosis means understanding, along with more understanding in a work place. I’ve registered her with my GP now and we are going to try again
2026-05-28 18:51:32
16
Emilie Ebbesen :
I have hEDS and I completely agree with you. It is an important diagnosis even though you can't do anything about it
2026-05-28 17:34:19
19
Sarah Morgan :
That's all well and good but it seems to be impossible to get diagnosed. My daughter was referred by her GP to rheumatology because both the GP and physio suspected HEDS but apparently only rheumatology can diagnose. Rheumatology said they don't see people for HEDS because there's so point when they cant do anything anyone and GP can diagnose but GP says only rheumatology can.
2026-07-20 01:45:42
6
ADHDdogsgardeningandme :
I have a hypermobility syndrome diagnosis had this in the 90s. but I do need a referral to see some one as my joints are subluxing more and more.
2026-05-28 20:46:53
0
Finding Feel Good :
It’s also EXTREMELY important not to get a lumbar puncture if you have hEDS!!!!!
2026-05-28 17:49:50
4
Political Voice UK :
They refuse you!! I've been refused for decades. I'm diagnosed with so many things and UMCTD. I now have gastroparesis, already have atonic bowel, spinal collapses
2026-06-05 18:21:23
0
Mary C :
had to go private for my daughters hEDS diagnosis as her Doctor kept telling her it was anxiety.
2026-05-28 21:20:40
0
Summer and Oz Guinea pigs :
Does this apply to HSD too? I’ve got those symptoms and wondering how SIBO is tested?
2026-07-20 10:49:33
0
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