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Getting a diagnosis

Steph j

Ive had "stomach issues" for over a decade and on and off knee pain for about 7 years. Since April of this year ive had back pain that's worse in the morning and during inactivity. Bending is especially painful. Ive had an MRI and x-ray which showed no damage and my HLA B27 test was negative. Ive also had what id describe as my eyelids feeling really swollen(but no eye pain) that a steroid drop cleared up. Ive also had extreme fatigue at times (2 energy drinks and 2 naps multiple days a week when it was at its worst) and what sounds to me like brain fog (telling my husband the same stories multiple times and slurring my words a bit when talking and trying to get my point across. My rheumatologist said my symptoms sound like classic AS and has started me on sulfasalazine and meloxicam (naproxen didnt work for me) despite the above testing all being negative. Im wondering if people that have uveitis from AS all have pain or some experienced the eye swelling feeling instead and also how to get a diagnosis when the testing mentioned above is negative. Thanks in advance!

James Hollens Moderator & Contributor
Hi ,

Just wanted to reach out and check on how you are doing. Did you manage to get any answers as to why you were experiencing these things or start any new treatments?

Best wishes,
James (Community Member)
Nicky Flikas Moderator
@Steph j hope your feeling alright today and having a good pain day. A lot of your symptoms are similar to AS. Everyone is different. You don't need to have a positive HLA B27 for a diagnosis of AS. You can be negative and still have AS. What helped me get a diagnosis, is seeing a rheumatologist and getting an MRI with some blood tests that showed high CRP. I know AS can bring some symptoms with the eyes. I had payed so many visits to ohpthalmologist. It is good to see one if you are having a hard time with you vision. I know AS can bring on extreme fatigue and increased brain fog making it hard at time to have conversations. Have you seen a rheumatologist? Know you are not alone and our website has a lot of information that can help.https://axialspondyloarthritis.net/diagnosis

Sending you positive vibes your way and wishing you all the best,

Nicky (community member)
1. Nicky Flikas Moderator
  I am so glad you have found the right help and getting the right diagnosis. I am also happy to hear you are on a treatment plan that is helping you get some relief. I know how hard it can be to not feel well and be in pain all the time. I know the feeling on how this disease sucks and can rule your life. But one day at a time. Thank you for sharing and sending you some warm hugs and love your way.
  
  Nicky (Community member)
2. Rebecca C Moderator & Contributor
  You stated - "Weirdly, I'm relieved to have the diagnosis even though the disease sucks." This is the paradox that comes with diagnosis and chronic disease.
  
  I felt so conflicted when I got the diagnosis of AS. How was I so darn happy I have a terrible chronic disease? Many feel this way in our community. At diagnosis, I believe I felt relieved that I didn't have to struggle any longer. But little did I know my next struggle was the treatment and learning to live with chronic pain. I was hoping with diagnosis, the pain and fatigue would evaporate. It didn't. (sorry to sound like a party pooper)
  
  I send you strength in finding the best treatment regimen quickly to ease your disease pain and burden. Hugs of hope ~ Rebecca (comm advc)