How quickly can AS progress?

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Hi - first post here, currently being investigated for AS. 42-yr-old male, B27 negative and bloods normal. Lower back pain last few months, particularly in morning.

However this has progressed to thoracic pain which is when I went to the GP. Felt like I'd worked out every morning. This has continued and now lasts for most of the day, doesn't seem to "get better with exercise" as is often said (although I wonder how this is defined).

Then in last few days my right groin is clicking and popping hugely and my neck has started to display signs of crepitus...the crunching sound.

My question really is is this a normal timespan for the progression of AS, and since I still haven't been diagnosed what else could it be? It just seems like - if it is - it's moving at quite a pace. I'm taking Ibuprofen every other day but want to hold off as long as possible.

Thanks in advance.

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12 Replies

  • Posted

    Have you had an MRI? I'm going for one soon to find out if I may have it. I'm HLA-B27 positive but inflammatory markers were normal and my pain in lower back is mild (although it was very severe during pregnancy).

    Sorry I'm not much help. All this is very new to me too but I think the next step for both of us is the MRI and to get a rheumatologist to check the results of it

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    • Posted

      Thanks for the reply. I'm waiting for x-rays to come back next week, so will know more then. If there's nothing showing I will push for an MRI (I'm in the UK). What is worrying is simply that the aching is worse in the morning...could be anything other than an inflammatory disease if that is the case?

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  • Posted

    I'm not going to be of much help, because from what I heard it all depends. It's individual. It's hard to tell what is going on with the parts of body your mentioning, but if you feel pain, lack of normal movement, than it could be that the inflammation has spread. I started "feeling" my knees today, fingers last night (come and goes) whereas before knees/fingers were not involved at all. "Just" SI, back, hip, ankle and oddly enough wrist - all on the left side. However, the chiropractor I have been seeing from time to time has found something on the left side of my neck two months ago and worked on it. When he touched it I felt a lot of pain. But it could be something that also healthy people suffer from, bad posture while sleeping, sitting... and not AS.

    If there's anything I can tell you... be stubborn and even if you're tests are OK it's better to act as if it were AS (I'm not talking about meds, but lifestyle changes) than let the doctors put you to sleep with the "good" news.

    I had been asking doctors if it was AS for almost 2 years, before seeing a rheumatologist. Even though I'm someone who exercises, eats well, there were still some adjustments I could have made earlier.

    Hang in there!

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  • Posted

    It certainly sounds like AS to me. Your post reads as if I'd written it (EVEN that annoying right groin clicking, I suddenly lose strength in my right leg). Except for your age that is. I began in my late teens and I'm 48 now.

    I've not heard of anyone progressing as rapidly as your disease is, but I don't know anyone with late onset AS. I imagine that many things about your disease might differ from those of us who began showing classic symptoms in our youth.

    I think your Dr is barking up the right tree. Definitely be stubborn and insist on an MRI.

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    • Posted

      Howdy Mr. Ed. wise words from you as usual...over the past few years I have had fingers and toes that resemble sausages....then the shoulders started to make me look like a US footballer....now it's the knees and hips...probably from walking around too much...not supposed to do that but I've been trying to live without my wheelchair. I have degeneration in 10 vertebrae...and the neck is worse than most due to a mishap in the car. My neurologist is a wonderful lady who looks after me well....but it tends to be me giving her information not the other way around. I've had two MRI's CT scans and numerous X Rays....and the condition seems to worsen every time I get new results. However...I've had an increase in energy lately...due to a commitment to social work I have an interest in. But at night I pay for all this with severe pain....and have to call my nurse for a jab in the rear. I really thought I was doing so well....but it is taking it's toll...The roller coaster ride of AS. I guess we have all been through this.....Hugs everyone...Gloria

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    • Posted

      G...you're a tough bird. Isn't it funny how we educated our "specialists" so often? My old Rhuemy retired and I miss him so much. I've been through four other docs since him. They keep getting younger and they each know less than then others about AS.

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  • Posted

    Had a text from my GP saying X-ray was "largely" normal, which raised the alarm a little since they can be completely normal with AS. So I'm going to push for that MRI.

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    • Posted

      Push for the MRI!

      Don't wait for the damage to become visible on X-ray. My MRI appointment is tomorrow. Unfortunately my GP ignores my rheumatologist and thinks it is just an inflammation of the sciatic nerve. Hopefully her comments on my MRI prescription won't influence the technicians doing the exam.

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    • Posted

      You can get an MRI done privately and bring the results with you to the rheumatologist. That's what I plan to do. It's such a slow process otherwise. Where I live it's 200 to get an MRI of SI joints. I'm skipping all the xrays and bloods etc that will likely just delay the whole process. I just want an answer hopefully to put my mind at ease. I actually injured the joint during labor 2.5years ago so I'm hoping my pain now is a result of that and not from AS 😮 but I just want the results asap

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    • Posted

      Xrays are pointless. I don't know why they waste their time and yours but I hope your MRI will be normal too. ?

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    • Posted

      Fingers crossed it's not AS smile 

      Btw, I'm doing it privately, even with the prescription. Otherwise I'd wait at least 7 weeks. Which I know is not that bad compared to some other places, but still.

      The gynecologist I saw last Thursday told me I was the 3rd women who came in that week with the AS diagnosis. She was stunned. 

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    • Posted

      I'm hoping to know for sure before Christmas hopefully sooner! Let me know your results ? fingers crossed

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