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anyone in the UK know how to get a diagnosis for hEDS and POTS? I've had doctors tell me for years that I "absolutely definitely have it" or "it's unlikely I don't have it", but for some godforsaken reason I can't get a diagnosis. Last time I tried, after YEARS of researching and going on more forums I can count, I started step one: demand a referral to the rheumatology department. I was given this text message the next day: ------------ Hi [me], further to your recent call today, I am afraid you will have to see a specialist privately as the rheumatology referral done recently was dismissed due to wrongful referral. We will not able to assist you further with this issue. Regards Dr ****** [local health centres' name] ------------ I'm at my wit's end. I genuinely can't take this anymore. Trying to juggle my AuDHD alongside this is just seriously taking its toll on me. And while I'm too unwell to work but can't get a diagnosis, I can't even claim benefits to help me out financially (but hey, I guess poverty is a hell of a diet). If anyone can lend some insight I'd be over the moon because I'm just so bloody done.
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Hypermobility Syndromes
Ehlers-Danlos Syndrome (EDS)
Postural Orthostatic Tachycardia Syndrome (POTS)
Attention-Deficit Hyperactivity Disorder
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I'm not sure about in the UK but in the US, a geneticists diagnoses EDS and a cardiologist diagnoses POTS.
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If you can get to rhymertology they can refer to specialist hypermobility centers, in England definitely. For pots it's either Cardiology or neurology, I saw local Nero then get refered to a specialist center. Can you see if your gp can re refer you? Also you can always request a change of gp or move practice if you feel you aren't being listened too. You can have benefits without a diagnosis, it's harder but possible as it's based on function not diagnosis.
☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision
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