AS Diagnosis revoked...?!
Hello friends,
Been I while since I've been on here but I need some outside perspectives!
I was diagnosed with AS about a year ago. At the time I was living in Mexico and I received several medical opinions which all arrived at the same diagnosis. For the past year I have been taking various treatments for AS.
I have just returned to Australia and to receive treatment had to get my diagnosis re-confirmed. My new rheumatologist has now diagnosed me with Fibromyalgia and will not accept the previous diagnosis of AS. I know these conditions are closely linked, and I can accept, I think.. that I have developed Fibromyalgia... but I'm having a hard time swallowing that there is nothing else going on.
Has anyone else been through this? I feel like for the past year I was told I was an apple and now I'm being told I'm an orange... ya know? It's jarring and very difficult to process.
Hey James,
I did end up getting a second opinion and AS was confirmed again. The new rheumatologist is making me wait three months more until my symptoms get worse so he can figure out the best treatment plan. I guess that makes sense (?) but in the meantime my health and mobility are seriously declining. Only treatment anyone will give me right now are anti-inflammatories and painkillers.
Also found out that I need a second spinal surgery yesterday, but the wait time in Australia is TWO YEARS...!
I should have stayed in Mexico...
Hi
,
Wow that is strange that they have withdrawn your AS diagnosis. It must be a pretty confusing time and I am sorry that you are going through this.
Perhaps it might be a good idea to get a second opinion from another rheumatologist over in Australia just to make sure if this new verdict is correct or not?
Has this re-diagnosis effected your treatment at all? Have they stopped what you were on before or given you something new?
I hope that you are able to get all of this cleared up soon!
Wishing you well,
James (Community Member)I had the bloodwork done and don't have the marker. I was diagnosed based on my symptoms and the degeneration that was showing up on my MRI's. New rheumatologist was dismissive of my symptoms and wouldn't look at previous scans... I feel like it's opposites day..
Thanks for you support Nicky 😀 I did end up finding another rheumatologist and things are slowly progressing. But yeah, it's been a nightmare getting doctors and specialists to take me seriously. I repeat myself so often that even I start to doubt what I'm saying... I hate how the doctors make you feel. Pretty sure the first Rheumatologist gave me the fibro diagnosis because I'm a woman... I'd heard of this kind of thing happening but didn't realise how prevalent it is in healthcare here.
Glad to be here and so is this community for any support you need. I hope and wish all the best with the rheumatologist you found in getting the help you need through the already hard struggle you are going through with this disease.
Sending you all the positive vibes your way,
Nicky (Team Member)
Hi, Alicia. Did you have any confirmatory bloodwork? AS and fibromyalgia are quite different diagnoses. HLA-B27 is the most common blood marker to confirm AS diagnosis. ESR (erythrocyte sedimentation rate) and CRP (C-reactive protein) can also be indicators of disease activity. AS can be particularly hard to diagnose in women. It took me 5 years of hearing 'you're too young' and 'you're a woman, it can't be AS' before I finally got my diagnosis. If your current rheum doesn't specialize in AS, I would seek a second opinion. If you do truly have AS, delaying treatment is never good!
