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Anyone with ankylosing spondylitis?

KimD592KKimD592 Posts: 435
edited 03/04/2015 - 3:45 AM in Chronic Pain
The first NS I saw told me that I have multiple thoracic disc herniations, which is not typical for a 29-year old female. He said that sometimes this points to a genetic disease called ankylosing spondylitis. When I went for my second opinion, which is the doctor who ended up performing my surgery, I forgot to ask him about this. Has anyone else heard of this? I was reading a little about it, and some of my symptoms seem to fit, right down to the pain in the back of the heel, especially when I first wake up in the morning. Walking down the stairs can be quite painful. I have my 6 week post-op appt with the NS on 8/23, and it's on my list of questions to ask him about.


  • One of my GF daughter who just turned 18 was diagnosed with AS. She is almost 6ft tall and has suffered with bad knees for several years. She has it in her pelvis, hips and knees now. They just moved to Germany from the states. I don't know what treament she will get. Here they had taken her off all wheat based products to help with inflamation and she was on oral steroids for her last flare.

    I think you need to see a Rheumy MD to get a definative diagnosis.

    Good Luck.
  • It may be worth looking into. I've had symptoms for years and had seen a rheumy at one point, who diagnosed me with fibro. It all started with back pain, and eventually progressed to joint pain. I went back to the rheumy several years ago, and this one didn't think my symptoms fit the dx of fibro and prescribed me an antidepressant. I was supposed to follow-up but never went back. Then I began having this back pain and was diagnosed with DDD and disc herniations, but when the NS mentioned AS, it kind of threw me off guard. I have a lot of hip and knee pain. In the last few months I've noticed a crackling noise in my knees when I go up and down the stairs. And when I first get out of bed in the morning, my heels hurt pretty badly. Then of course there is the back pain, but with all of my disc problems it seems like a no-brainer. Perhaps I'll follow-up with my old rheumy again and see what they say.
  • I was diagnosed with ankylosing spondylitis about 12 years ago. I was "old" to be diagnosed at around 40. It is primarily a male disease but women get it as well. There is a gene - HLA B27 which most people who have AS have, but you can have AS without it. It can affect multiple body parts with inflammation - elbows, knees, hips, back, neck and the dreaded heel pain. You tend to get a lot of "itis"s - arthritis, bursitis... The parts of your body affected can change over time. Men with AS tend toward their spines fusing. Women do not have the same issue. My surgeon felt I didn't have AS because I hadn't fused, but I have inflammation and bony spurs, etc. all over the place.

    Go to a rheumatologist who can review you for A.S. or fibromyalgia. It is often difficult to get diagnosed with A.S. because doctors often prefer to diagnose fibromyalgia. There are good ankylosing spondylitis sites on the web. PM me if you want.
    4 level ACDF C4-C7 5-2-11, laminectomy & discectomy L4-L5 1/26/12, ALIF L4-5, L5-S1 12/10/12.
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