Need Advice new to A.S.

Posted , 5 users are following.

I had spinal surgeries due to a tumor 2 yrs ago. I've recently been doing disability paper work, and came across my medical docs from the hospital. On the docs they diagnosed me with Ankylosing Spondylitis, however- no one ever mentioned it to me 2yrs ago... and now I have been looking it up realizing the seriousness of the situation. I have no idea how to handle this, what steps to take, etc. I feel lIke my regular drs don't even know this diagnosis and it's kinda been the reason behind all my issues lately.

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  • Posted

    Go to your GP and ask to be referred to a rheumatologist, this is where you need to be so you can get the best treatment available for your condition.

    I can't believe this wasn't followed up as I'm sure you've read that early treatment is key to preventing damage to your joints, especially as it can take years to be diagnosed and only then because damage has shown on scans.

    I can imagine you've scared yourself with what you've read however if caught early you can keep it under control so insist on a refferal, the nurses are always on hand to answers questions and put your mind at ease, there's always good support on here to help you through when your feeling low and want to get it off your chest, so don't hesitate where always here to listen. Let me know how you get on. 😊

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  • Posted

    Without any delay visit best Rheumatology doctor with all your reports.
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  • Posted

    Hi there. Yeah I guess it's a shock to discover that you have AS. I'm very surprised though that you weren't told at the time. It's not a disease that will ever go away. I have had AS for 30 years now. I am now 56 and am getting worse By the day and I am in a lot of pain. I would say that you need to see a rheumatologist that specialises in AS and that can get you on the right meds although there's no guarantee that they will work. It's trial and error I'm afraid. Your AS may have been triggered by your surgery ie the trauma to your spine. I have no answers to mine other than I was pregnant and had a red painful eye. After bloods and an xray I was told that I had AS and to learn to manage it basically. I feel I've never been given any real support as I dont believe that doctors etc have a clue. The key is finding someone who understands and can set you on.the right path. Good luck.

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    • Posted

      hi gill.

      I'm surprised that the drs haven't given you the treatment such as TNF blockers as yet.

      I have both hla-b27 and AS. for 8years now and past 2-3 years it has been more severe and now I'm suggested on the final medication which is enbrel and humira which are TNF blockers that help to control the disease and ease the pain. I think you should talk to your rheumatologist about it and I really am hoping you to start the treatment soon. I'm starting my treatment soon I know there are risks and I'm so very scared as I'm just 21 year old woman soon to be 22 this year and this is a huge step for me and it's a do or die thing for me because the pain is very severe and hard to cope with and has come to that stage where my pain killers don't help much. I hope this helps

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    • Posted

      Hi there. Thanks so much for your reply. Sorry to learn that you're only 21. I was 26 when told I had this awful disease. I really hope the humira or whichever they put you on works. I have tried all the anti inflammatories without any improvement. I asked my rheumatologist 2 years ago if he would prescribe me anti tnf. I had an MRI and because he said my hips weren't showing inflammation he wouldn't prescribe it. I read that it could be prescribed anyway but I reckon that they're cost cutting in my hospital. I think I will try and see another doctor. He hasn't helped me at all in the past six years. Let me know if you if your new meds work. Best of luck.

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    • Posted

      Thanks gill. I read my prescription again and it is enbrel. It is really cost cutting. And this is the only treatment left for my case. I opposed doctor due to side effects and he was quiet sure that's the only thing left for me to do as the anti inflammatory tablets don't work for me anymore. I would recommend you to see new doctor. I met three doctors in past and all led me into wrong things but this fourth doctor is the one who is confident and very certain about his decision. I wish I got him last year as he was always booked but better late than sorry. Can you please tell me where you reside so maybe I could try and find a good doc for you online. I'd really like to help you even though I'm not a pro at this I'm new to this. But it just hurts seeing someone else in pain too.

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