Hey Blue, There are many of us Crohnies who have been Dx with some form of Spondyloarthropathy. This is an inflammatory arthritis, which, in it's early stages, primarily affects the soft tissues surrounding the joints. Many times, there is also inflammation in the bone itself too, but there is not generally any visible sign of joint destruction in the early stages.
A bone scan, to determine uptake of the dye might be helpful in determining how many of your joints are affected. That was the first step to my Dx. Sclerosis of my lumbar facet joints was step #2. This is essentially the first step of joint fusion.
There are some drawbacks in trying to get this Dx, especially for a woman. Many "ols time" Rheumatologists seem to be stuck in the original theory that this was a man's disease. The research shows that this idea is a misconception and women are just as likely to sufer from some form of SpA as men. Also, women can present with very different symptoms.
The primary areas that SpA attacks is the spine and SI joints. In my case, it began in my knee and R shoulder. Although I have been treated by a Pain MGmt Doc for 3 years for SI joint pain, my MRI showed no changes to that joint. That combined with my negative HLA-B27 test led me Rheumy to believe that I didn't have AS. He couldn't think enough to et outside the AS box and see the entire group of SpA diseases.
I'd recommend that you find a Rheumy that really is familiar with how this disease works and progresses. The idea of having this is certainly not fun and my joints have become the priority. I've learned to tolerate the gut problems, perhaps because they are easier to manage, but I cant live with the joint pain. My GI was not inclined to treat my CD more aggressively becaue I seem to have mild intestinal involvement, but my Rheumy knew we had to be more aggressive about
my joints. I'll be starting Humira next week and am looking forward to getting both diseases under control with just one med.
I hope you find answers and more importantly, relief.
Keah a.k.a. Wormy
God helps those who help themselves.
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