Mybe they can see inflammation, you might ask them to use ultrasound so they can see the inflammation. I know what your going through, I went through it for 5 and 6yrs. Before it showed up on sl joint, but the pain was so crazy and that was another reason why I did feel alone.

You could go to the spondylitis dot org site and get more information for your doctor.  I can't believe you can only see one doctor!  The doctor you are seeing is absolutely not treating you correctly. The goal of therapy is to prevent fusion!  Not everyone with this disease has fusion, but still suffer the effects of the inflammation.  Could you move??  Seriously. There is no reason for you to suffer with a serious disease because your doctor is uneducated about one disease. Push the insurance company to allow you to see a different doctor.  Show them the new research and treatment recommendations.  Show your doctor.  Pain is from the inflammation, not the fusion!

New doctor.  That's absolutely not consistent with the research on this disease.  It may be years before you have fusion.

Am I missing something?  The time to start treatment on AS is *before* fusion!!!!!  Are you at least getting anti-inflammatory medication stronger than Ibuprofen? At the very least you should be getting these plus hysiotherapy.  IF it's really bad see if you can get your doc to break the cycle with a short course of prednisone.  Nip this bad boy in the bud and keep screaming till someone listens.

Hi Brittney.  My MRIs came back showing no fusion, but arthritis.  The use of a biologic is to help prevent the fusion and if your rheumatologist is waiting for that to happen, it's too late.  The biologic works to suppress your body from attacking itself. My doctor also diagnosed through all the symptoms.  You need a good physician who really understands the disease.  I had never heard of AS before being diagnosed and had no idea the various symptoms over the years were all part of it.  Reach out to others in you area who have AS and see if they can recommend a different provider.  I reached out to the local contact at www.spondylitis.org/about/as.aspx  It helped me get started in the right direction.  Best wishes.

I'm not sure Brittany, they never have even done an MRI on me, they did it all based on symptoms and the way that I reacted to a high dose of prednisone, and then did X-rays, which didn't show fusion, and found hla b27. They put me on the biologics so it wouldn't get there (hopefully but who knows long term).
That really stinks that they aren't helping you more. Did they at least do a dmard?

Keep perservering I guess! I had no fusion but a LOT of inflammation so was told I have to wait 6 months for the good meds as it's a government requirement but my Rheumy says I'm a good candidate for them as at the moment I'm hardly living life at all. Keep battling!!! Good luck.

Has your Dr. Tested you for the AS gene and inflammation levels? I have been dealing with back pain and leg fatigue for the last 6-7 years and was being treated by a pain management Dr thinking this was simply a back problem that could not be operated on. I was diag with AS last Dec when my pain management dr suggested we rule out RA/AS (why this took 7 year, who knows) and refered me to my current Rhumatologist. I had an MRI which did not show any fusion but I tested positive for the gene and my inflammation was 3x higher than a "normal" persons. Push to get a C-panel blood test to show the imflamation levels...might helps

Hi, i have had the same exact issues! I was just diagnosed last year and when i first went into the doctors, i had all these weird symptoms and they had no explainations for me, just thought i was crazy. But to me , it was unbearable. So i kept at it, and then suddenly realized my little brother had a bone disease but i didnt know much about it. I looked it up not expecting much and knew right then thats what i had too. It all made sense and was right on with how i was feeling. So that steered my doctor in the right direction. I had a blood test done to determine i had it, and that was enough for them because of my brother. I also had x rays and there were no signs in them of any AS. Even though we can obviously feel it. I dont have any insurance so i dont get to see a rhemetologist, just a local resident. Its frustrating, because she knows nothing about this, and i dont feel like she understands what i feel or what im going through. So im totally there with you. It feels lonely , frustrating and confusing, when u know how it is but nobody is helping. Im on meloxicam right now, but this is the 7th prescription ive tried. Ive either had bad reactions to each one or it didnt work at all. This one doesnt seem to be strong enough. I wish you lots of luck and dont give up! Its great that u have no fusing and keep fighting for what you think is right and digging for more info!

Wow - that's shocking news about your rheumatologist. I agree with all of the above responses. Perhaps your family doctor can help, or help you find another rheumatologist. Or maybe, the neurologist you are being referred to understands AS

The other responses are spot-on. In my case, I'd had symptoms for over 20 years, which had become unbearable (back pain, which had spread to my ribs, my hips, and every other joint in my body). After a couple of years of chronic iritis, and a positive test for HLA-B27 - along with near failure of NSAIDs to prevent the pain - I finally got a referral to a rheumatologist. I had written out my whole medical history, and after viewing my x-rays, he called me a poster child for AS. He felt that I also had psoriatic arthritis, which probably accounted for the pain in all the remaining joints of my body.

When he looked at my x-rays, he saw absolutely no fusion. He saw very, very minimal bone degradation in my SI joints, and none in my spine. Frankly, he credited the clean x-rays to my lifelong dedication to working out (which I had kept up, because that was the only thing that helped my AS symptoms). So, yeah, there's a lot of us without fusion - and that's when you need to be aggressive, so that you don't *ever* fuse.