Misdiagnosed With Ankylosing Spondylitis
Last updated: September 2023
I will be saying farewell to this amazing group. I have been battling what my doctors and I thought was advanced AS. I am 65 years old and was diagnosed 5 years ago. I had been suffering for more than 25 years. I made the rounds of treatment; from nsaids to methotrexate to about half dozen biologics. Only prednisone gave me some relief. My rheumatologist told me that since my spine was essentially totally fused, relief was going to be difficult.
Last week I decided, after many years, to visit another rheumatologist. He is an AS specialist in private practice and has an impressive resume, which includes many years at Johns Hopkins.
He didn’t say much, but he LISTENED TO MY STORY. Listened to how and when I first started having pain. My treatment plans over the years.
After spending 45 minutes with me, he said “I don’t believe that you have AS”. I was shocked when he told me that he believes that I have something called DISH (diffuse idiopathic skeletal hyperostosis). He explained to me the similarities and differences of the two diseases. Where AS is an auto immune disease, DISH is not. He explained that this was why none of the biologics actually helped, even a little.
While there is no cure for DISH, I don’t have to worry as much about GI issues and uveitis like AS patients. He looked at my spine x-rays and explained how an AS spine looks versus a DISH spine.
While AS also fuses the spine, DISH fusion is different. The osteophytes in DISH are huge compared to AS. Another similarity is that they both affect extremities, but my SI joint is not fused the same way it does with AS. He explained that the SI joint is usually the first sign of AS, even before other spinal issues.
Another difference is that DISH symptoms usually manifest after age 40 (I was about 40 when symptoms first appeared) and AS symptoms are usually first noticed in 20s-30s.
Unfortunately, there is little known about the cause(s) of DISH and treatment includes pain management and PT to maintain flexibility.
So, as I say farewell to this wonderful support group, I will be searching for a DISH support group.
I want to thank all of you who have been there through my struggles. My prayers are with you all.
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