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How long have you been diagnosed for?

How long have you been diagnosed for? Did it take long for you to be diagnosed?

I am diagnosed just over a year and luckily I was diagnosed within a year.

  1. More than 40 years here! Yeah, really!

    1. I am sorry to hear it took this long to get a diagnosis of spondyloarthritis. Hoping you are on an appropriate treatment plan and pain becomes less, life tasks easier, and better days are ahead. Now you are aware of what is ailing you - how are you dealing with this diagnosis? How can we support you through the journey? The support here abounds! Rebecca (comm advc)

    2. thank you so much! I actually suspected what it was for a while, so had done a lot of research beforehand. I was tired of dealing with local docs who kept telling me that I had “mild” disease because they had misdiagnosed it. I went to the Mayo Clinic in Jacksonville and took all of my stuff. Took him less than half an hour. Luckily, I’ve been on Humira for several months and the treatment is working. Pain in my SI joint turned out to be osteo. I’m angry that not one of my rheumatologists questioned the RA diagnosis despite my having no erosions, no bilateral joint stuff, etc. Just kept saying it was because my disease was mild. Even though I could barely walk at times. But, I can’t waste the energy I still have on that. I will, however, be insistent and well prepared in the future. Thank you for this site and for your response!

  2. It's almost been 3 years since I was diagnosed. Once I met the rheumatologist I was also diagnosed within a year. But it took a couple of years to even get to see a rheum but I'm not sure if that counts towards the total waiting time.

    1. Hi

      It's coming up to my third anniversary for my diagnosis!

      It's hard to say how long it took me to get diagnosed as I was struggling with back pain for a long time before but it didn't really impact my life too much. But I ended up waking up unable to move one day and from then it was a week or so I was admitted in hospital before it was suggested that it was AS.

      From then I had to wait a few more months to be officially diagnosed after some scans were done, but I pretty much knew what it was all the way through.

      How long exactly did you have to wait to find out your diagnosis?

      Best wishes,
      James (Community Member)

      1. Hi @Ali Long,

        I am so glad to hear you got diagnosed in a very fast short period of time.
        I was diagnoses also pretty short time. It took me around a year and a half, which I am so thankful for. What was frustrating for me was finding the right doctors to listen to me, that more was going on the mental health issues.

        I know some can take longer for a proper diagnosis, which makes me sad for so many of us suffering.

        Sending you my best wishes.
        Take care,

        1. Thanks Nicky, I am also glad to here that you were diagnosed relatively fast too! I'm sorry that it was so hard for you to find a doctor who really listened to you. Does that doctor that you have now listen to you? I hope he does.

          I know, it's very upsetting how long it takes some people to get diagnosed.

          All the best,
          Ali (Community Member)

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