None radiological axial SPA
Hi there,
I’ve posted a similar topic on here before and I’m posting again because I’m literally at the end of my tether.
I saw a rheumatologist back in 2019 as I had symptoms of axial SPA and was HLAB27 positive - the rheumatologist was lovely and did an MRI but then discharged me back to my GP as no evidence of sacroilitis but did say to be re referred if things got worse. Pain has been worsening and worsening since and I’ve been on pregablin and co codamol for years with no answers. Obviously due to the pandemic I didn’t want to bother anyone.
Before Christmas my optician found something that looked like optic neuritis in my eye and advised me to go back to my GP who I thought would send me back to rheumatology but it resulted in a referral to neurology who were absoloutely awful and basically told me they thought my pain was in my head and I needed to see a psychiatrist for health anxiety which for me is patently untrue -however he’s sending me for brain and spine MRI’s “for completeness.”
I guess my question is has anyway had a negative MRI initially but then been diagnosed with a second MRI?
I feel like I’ve been passed around and will now be labelled a hypochondriac and never be taken seriously again. 😢
My symptoms do seem to fit with something more rheumatological than neurological which I tried to explain but was told if it wasn’t diagnosed in 2019 it’s unlikely to be.
If I might add something. Having been to see 4 rhumos in 3 countries over the course of roughly 20 years all of whom told me that I was imaging the deterioration in my spine, I FINALLY landed on a Dermatologist who smelled a rat and ordered the rhumos to look at me. The message? Try and keep looking for a doctor who actually listens to you, and doesn't just treat you as just another case! We often forget that medics are humans too, and humans by their nature work on routines. AS is NOT a routine case, and so I have taken the view that doctors need to be kicked to shift them out of their routine thinkings. Speak your mind, and if they aren't listening, just keep trying until you get satisfaction. Its a pain, for sure, but not as bad as the pain you're living through. Good luck to you!!
Thanks for sharing your experience and advice. (Perhaps just not literally "kicking" doctors. lol) ~Doreen (Team Member)
I am saddened to hear what you are going through.
Being passed around and not taken seriously is beyond frustrating. As I'm sure you are aware, testing for and diagnosing AS can be quite challenging. It is so important to be the best advocate for yourself and it certainly sounds like you are trying your best.
I thought I'd share this article that may provide some helpful information on the diagnostic process: https://ankylosingspondylitis.net/diagnosis/understanding-results
I would also consider reaching out to your rheumatologist yet again and perhaps updating him on what has been progressing over the past three years.
Always know this community is here for you and we send you all our best,
Doreen (Team Member)
