Struggling to get a diagnosis and the help I need

Lemonte
Lemonte Member Posts: 2
in Chat to our Helpline Team

I was diagnosed with Anklosing spondylitis (AS) after having terrible pain in my shoulders, neck, rib cage, and my back, I was put on sulfasalzine and given naproxen an sent away, months later, I have pains in my hips etc as well as the other pains, I went back to rheumatology and I was told “I couldn’t have pain in my hips or legs as I have AS and that only affects upper body” so I question it and the medication I’m on as it feels like it does nothing, I came away having been put on different anti inflammatory medication as well as sulfasalazine, in lockdown I received a check up call in April/may from my physio who I’m yet to let because of covid 19, she tells me I’m not diagnosed with AS my diagnosis is actually Undifferentiated spondylarthritis, what does this mean? I feel like I’m just living in pain daily and the drs don’t seem bothered, I just don’t know what to do?

Comments

  • Ellen
    Ellen Moderator Posts: 1,851

    Hello @Lemonte I am one of the moderators here.

    I would like to quickly and warmly welcome you to the Online Community while you wait for the Helpline Team to get back to you.

    Do please come over and join in the rest of the forum we do have members with Ankylosing Spondylitis who may be able to share their experience.

    Best wishes

    Ellen.

  • Mike1
    Mike1 Member Posts: 1,992

    According to Google Undifferentiated spondyloarthritis (USpA) is a term used to describe symptoms and signs of spondylitis in someone who does not meet the criteria for a definitive diagnosis of AS or a related disease. Sometimes a doctor may make an initial diagnosis of “spondyloarthritis” or “unclassified spondyloarthritis” if certain spondylitis symptoms are present but are not distinctive enough to make a specific diagnosis.  More info at: https://spondylitis.org/about-spondylitis/types-of-spondylitis/undifferentiated-spondyloarthritis/

  • helpline_team
    helpline_team Posts: 3,782

    Hi Lemonte,

    Thank you for posting on the Helpline Forum. I am sorry to hear there has been some confusion about your diagnosis and you are in a lot of pain. It is good you received a follow up call from your physiotherapist who tried to clarify things for you. It sounds as if you were initially diagnosed with AS but you may have Undifferentiated Spondyloarthritis. Mike1 and Ellen have given helpful responses.

    It may help to talk things through with your rheumatology nurse who could also review your medication. You can also talk things through with your GP. We are not medically trained. I have given links below to some more information which I hope you will find useful.

    https://www.nice.org.uk/guidance/ng65/ifp/chapter/What-is-spondyloarthritis
    https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

    If at any point you would like to talk about your arthritis informally and in confidence, you are welcome to call our Free Helpline on 0800 5200 520 weekdays 9am – 8pm.

    I hope this is of some help.

    Best wishes,

    Fiona, Helpline Advisor 

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