Does this progress to AS?

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last week, I got a diagnosis of Sacriolititis.  When I looked it up, the info read that Sacriolititis is the hallmark of AS.  Does this mean I should expect a progression from S to AS?  If so, what is the crossover symptom?I have IBD and am so stiff I can barely walk.  Also have memory issues.  

My doctor is very brisk and i feel he's not taking this seriously as I am 54, older than onset of AS.   I cant change Rheumatologists because he is the only game in town.  I have low vision so I don't drive.  My second visit is mid January for a treatment plan.  What can I expect?  I also want a script for a wheelchair as this is all complicated with my mild Cerebral Palsy.  Wonder how That will work out?  I'm already using a walker for outside the home and about to start using it for inside too.  

Thank N you all for your help as I don't feel hopeful that I will be taken care of properly by this doctor whom others rave about.  

 

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  • Posted

     sacriolitiis and IBD could be connected to AS.  I was diagnosed with sacriolititis and piriformus muscle tightness in my 50s and now psoriasis, PSA and AS in my 60s. I am sorry you are in such pain and discomfort.  I am sure have mild CP doesn't help at all.  Did your rheumatologist do bloodwork for AS?  Keeping active (yoga) and doing exercises prescribed by a physical therapist help me tremendously.  Just started taking a curcumin supplement to address inflammation.  I am sure others can give you more advice about what to expect.  Good luck.

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  • Posted

    Sorry to hear about your pain and discomfort.  It's true that sacroiliitis is one of the principal and first symptoms of AS.  But I'm also assuming that it can be independent of AS also.  In other words, having AS means that you will probably have sacroiliitis but having sacroiliitis does not necessarily mean you have AS.  Does that make sense?  Please ask your rheumy about testing for HLA-B27.  This is a blood antigen that is another piece of evidence for AS.  Also, many of us who have AS related illnesses also have IBD.  Autoimmune diseases seem to go hand in hand with disruptions in the workings of the gastrointestinal system, at least for some people.  Just curious though.  You mentioned that you are stiff all over.  Specifically where?  Very common to have stiffness in the spine, hips etc.  I'm assuming you had some sort of imaging to get the diagnosis of sacroiliitis.  Did you get similar imaging done of the spine and hips?

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  • Posted

    Thank you so much for your replies.  Yes! I have the HLA-B27 marker.  I had to ask for it.  My PCP didn't suggest it.  It came up positive.  I've had enough blood work to drown a camel.  My ANA is wonky.  So something is up.

    My Rheumy diagnosed  Sacriolititis after looking at my pelvic MRI.  I've had a gambit of spine and back ex-rays but only the MRI of the pelvis showed something.

    My tightness and stiffness is mostly in my hips, lower back and my right leg down to my toes. My foot literally corkscrews into a weird macaroni and only concentrating to relax and time unwinds it.  I have osteo in my hands but can still function.

    I woke up this morning in awful pain and could not walk until the muscles started to relax a bit.  For the first time, I used my walker in the house to get from here to there.  It has released now.  Thank God I didn't have an urgent need for the bathroom or it would have been a messy situation as I can't hold my pee or poop.

    just switched to Motrin instead of Tylenol since the Tylenol was not really doing a blessed thing.

    thanks again for more education!  I'm reading everything I can get my hands on.

    Peter, I understand exactly what you mean.  Thanks.

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  • Posted

    Inflammatory Bowel Disease is associated with it's own range of joint issues including sacroiliitis and these extra-gastrointestinal symptoms i.e. non gut related appear in 20% of IBD sufferers with muskuloskeletal being the most common of those. As you have the HLA-B27 genotype it is possibly related however may also be an extension of the IBD underlying immune dysfunction. if the latter it should be controlled with medication that targets both such as immunosuppressants. Ank spon would be unusual in your age group when you have another cause eg the IBD but nothing in nature is impossible!

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  • Posted

    Hi.

    I first started with Sacroiliitis when I was 23 and my condition worsened so much I had various tests, scans then a 2nd opinion and was diagnosed with AS. Sacroiliitis seems to be the start of problems associated with AS that's how it was all explained to me, and now I am 47 years old and it's affecting all my joints, spinal fusion of discs, and it's a struggle but am doing the best I can. Hope this is ok for you.

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