Dr Ahmed
Region: GB
Tuesday 13 January 2026 14:00:42 GMT
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🌞 Hayley 🌞 :
Yeah no specialists or gp’s will do anything to help us 😭
2026-01-13 17:54:32
343
Beth 💌 :
No drs, spine surgeons or even advanced practitioners diagnose this condition in the UK.
2026-01-13 16:43:08
128
🐱 :
but what's the help the NHS will offer for it? there's no point fighting for diagnosis if they aren't offering any help
2026-01-13 16:53:57
70
Valerie Trueman :
unfortunately doctors just don't care anymore
2026-01-13 20:13:31
41
Def Leppard Fan :
The NHS in the U.K. is completely broken so telling people you need scans appointments and fighting for diagnosis is sadly like fighting a losing battle- chronic conditions aren’t what the nhs want to investigate as it’s too complicated and now too expensive and for a lot of people that daily struggle they can’t get any help - you seem very nice but false hope doesn’t help anyone
2026-01-13 21:15:11
37
Charlsss :
How do I get my doctor to listen because they just keep telling me to go back to get my eyes tested for a 3rd time and prescribing naproxen for these exact symptoms! 🤦♀️
2026-01-13 14:42:01
21
o_suza_o :
There's absolutely no way I'll ever get those scans on the NHS
2026-01-13 22:27:37
21
Jenna | My Glow Up Era ✨ :
I think I have this. I’m never without neck pain and it’s always at the top where my skull meets my spine. I have sleep apnea as well and migraines. I don’t have much faith that anyone would listen if I did bring it up. How would you suggest someone goes about it? X
2026-01-13 18:38:34
12
FindYourTribe :
I have many of these symptoms following ACDF 6-7 a few years ago but got told it was fibro.I now have another large disc bulge at c5-6 and recently told I have hypermobility and am waiting on Cardiologist for ? POTS .I am sure it have EDS
2026-01-13 14:08:03
9
Lolly D (Covlolly) 🧙♀️⚡️ :
Can it cause prolapsed disc in the C2/C3/C4?
2026-01-13 19:53:10
7
Chelsea :
My GP doesn’t know what POTS or MCAS is and thinks EDS is just hypermobility. No scans, referrals bouncing back as it can be “treated in the community” but GPs say it’s too specialist for them to treat.
2026-01-13 23:14:26
6
Armo :
Is there a treatment plan or can this be prevented in any way?
2026-01-13 18:40:11
5
hannam101 :
I have hEDS and a bunch of these symptoms. I also have severe vertigo that gets worse when I lay down and I believe it is from my neck. Doctors won't listen....does it also cause vertigo/disequilibrium?
2026-01-13 15:24:27
5
MrsD1987 :
My daughter had spinal surgery last year, she is hyper mobile but now has most of these symptoms I’m starting to wonder now..
2026-01-13 15:04:18
4
xKitty_cattx :
My daughter got referred to rheumatology by the GP for EDS and they sent a letter back saying they acknowledge the condition but won’t offer an appointment to just do physio 🙄
2026-01-14 08:12:20
4
Autistically Beautiful :
I have hEDS and have all this plus more. i live in ireland and have no way of getting this diagnosed and proper treatment for it.
2026-01-13 19:46:21
4
GABA | disabled family life :
I have eds and ankylosis spondylitis, Oesteoarthritis in spine and now scoliosis. I thought my neck pain was eds for ages and it wasn’t
2026-01-13 18:09:33
4
apple_349 :
I've been suffering from those pains and tingling for years. I don't see much improvement in the pills I'm taking and when I ask the GP he tells me that there is no other pill than the one I'm taking. 🥹🥹🥹🥹
2026-01-13 19:22:58
3
☮️✌🏻🌻 :
I have stickler syndrome and have some of these problems with my neck
2026-01-13 18:03:37
3
Abigail Hutchins :
This is insane? I’ve got hEDS and I’ve been diagnosed with the rare incurable syringomyelia.
2026-01-14 09:56:31
3
mickey UK :
Oh so wish you were my GP. I just got diagnosed with this at 48. I was told I was psychosomatic for years until I was 42 when I finally got diagnosed with EDS. Only found I had EDS after bowel specialist diagnosed slow transit constipation and oesophageal dysmotility and then bladder specialist did urodynamic tests diagnosed neurogenic bladder and then after discussions between both suspected EDS.
2026-01-13 17:00:44
3
Meg :
I have all these. Been struggling to manage day to day for 3 years. Finally got told I had a hypermobile spine and fibromyalgia and then recently by my pain lady that yes, I'm hypermobile but that there's no route to dx in Wales so they just send you to physio.I mentioned an upright MRI but was told since I had a basic one 3 years ago they wouldn't do it...so basically unless I go private I'm stuffed and left like this, I struggle to sit upright ffs
2026-01-13 16:02:29
3
Jen Hall :
I was diagnosed with fibromyalgia and hypermobility 15 years ago, I had a neurologist refer me back to the gp to make a referral for EDS after ruling out MS. The GP wrote a crap referral deliberately coz he said I dont have it coz I dont have any obvious heart issues. Now I dont feel I can put myself through it all again, to be rejected for the umpteenth time
2026-01-13 20:51:52
3
Emily Povey :
I have pots and very likely EDS went to gp last year for numbness in hands and pains in arms, neck and legs MRI of spine showed a syrinx c5-c6 could this be causing my symptoms (all you mentioned in this) or is it more likely to be chairi? Year wait for neurology
2026-01-13 19:49:12
2
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