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Help NHS not documenting visible joint swelling
Really need some help im going through hell with the NHS spent 1000s on private trying to get answers I have a suspected axial and peripheral spondyloarthritis and seronegative inflammatory arthritis diagnosis but the NHS are not acknowledging joint inflammation in flexion as it isn’t present in extension. I desperately want to understand why I am being gas lit like this and if anyone has had similar experiences. How can they say they can’t see it, yet private ones do? I can’t access treatment unless the NHS agree yet I’m sent in circles. Please any advice to end this psychological nightmare I would appreciate
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I know you aren't alone because I've come across it a lot and almost cheered when my blood results showed that I was serum positive.
Can you get referred to a rheumatology department that diagnoses with ultrasound? Mine does, South of Manchester if that's any good to you. He looks for inflammation right inside the joint trust isn't doing on the surface.
I hope you get some answers.
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2 ReactionsThanks so much for your comment. Funnily enough that is exactly what I plan to do I have found a rheumatologist in Manchester who uses US to diagnose, may I ask if it’s the same consultant? I’m just having a really difficult time trying to rationalise why a consultant would lie and say he can’t see what is visibly there. I’ve had constant swelling now for 2 years and no treatment or acknowledgment. I vowed when I finally get a diagnosis to help others who have experienced this medical gaslighting because that is what it is
His name is Qasim Akram. He's a nice guy and it's a speciality of his. He works out of Stepping Hill.
If you get put on hydroxychloroquine make sure they don't just bung you on 400mg a day, it shouldn't be more than 5mg/kg , that's supposed to be the safe limit for eyes.
Good luck!
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1 ReactionThank you so much for responding I will be seeing this guy very soon and pray he can help me. I’d love to here from anyone else who is having the same psychological nightmare too
@sas2012 I hope you get on OK, I find him very sympathetic privately but his department in the NHS is very stretched. He should, though, be able to put you on hydroxychloroquine immediately for only the NHS prescription charge at the chemist and instruct your GP to prescribe it ongoing.
Good luck!