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What was it like prediagnosis?

I am a 33 year old male. Over the past few years I’ve acquired chronic low back pain, hip pain, mid-pain pain in my vertebrae, neck pain, shoulder pain, and costochondritis. I read about AS, and how these are the areas that typically hurt. I’ve had MRIs done on my lower back and my shoulder and there are no signs of AS. The doctors think I’ve just coincidently had injuries to all these places and that those injuries just coincidentally keep flaring up.

I feel like I’m in the early stages of this disease and perhaps the real signs (bone fusion?) haven’t shown up yet so doctors won’t take this diagnosis seriously. Did anyone experience this in the early phases? Can anyone relate to this? I’m looking forward answers. I don’t want to wait around for it to get worse

  1. Hi !

    My early symptoms of AS also included hip pain and lower back pain. I dealt with it for years before really pushing to get some medical help. It was actually x-rays that helped my doctors make my diagnosis because at that point my AS had already caused some bone fusion. Unfortunately I hear a lot about how hard it can be to get a correct AS diagnosis, so I know that MANY people in our community can understand what you are going through. I applaud you for being proactive and advocating for yourself!

    Have you seen a rheumatologist? My general practitioner had no idea what was causing my pain, even after x-rays and MRIs, and it took seeing a rheumatologist to finally get a diagnosis and some answers.

    Sending you well wishes and hoping that you find some answers!
    -Erin (Community Member)

    1. Thanks for the response Erin. I have not seen a rheumatologist yet. I didn't know what that is until you mentioned it. My doctors never brought that up. I will request that they refer me to one.

      1. Hi these where some of my early symptoms of AS. I am sorry you are going through this. You have come to the right place where you can find support and so much information on this disease. What helped me getting the right diagnosis after seeing several doctors and getting dismissed was searching around my area a rheumatologist that is experienced with AS. The thing is they can all be rheumatologist, but all do different things with diagnosis. I hope you find the answers you are looking for. Wishing you well and sending you some positive vibes, Nicky (Team member)

        1. turns out all my bloods are normal, no markers of inflammation, sacral joints look normal, and I'm negative for HLA-b27. Meanwhile, I tried to play basketball this weekend and I spent the next 2 days bedridden. I wish I knew what was going on. Do you think AS is unlikely given all these tests?

        2. I am sorry you are going through this. I have been through a similar path. Have you done an MRI? You don't have to be positive to be diagnosed with AS. I am negative. If you feel there's more going on I would look into getting another opinion. I saw more than one till i found someone that would listen to how I was feeling. I know it can look discouraging, but don't give up. You know your body the best. I would maybe look and research for a rheumatologist that specializes in AS cause i learned the hard way, they all do something different. I hope you get to rest and feel a bit better soon.

          Nicky (Team Member)

      2. You will have severe swelling around your sacrum... It seems that is the diagnosis

        1. Oh and your HLA b27 blood test result

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