It’s Taking Forever To Get A Diagnosis!

Last updated: July 2020

I’m 50 now. I’ve been having weird pains for about 26 years with random explanations from different doctors. "You’re overweight" (I was not that overweight at the time). "You need to do yoga". "You need to lift weights, do sit-ups, go to a chiropractor, blah, blah, blah". I ended up with a t1-t9 fusion and no answers.

Nothing helped

Unfortunately, these things tended to make things worse. I used to be fit. I used to be a dancer. I used to wrestle with my kids. Now, I struggle to get off the floor and I understand what a “flare” is.
In 2017, a rheumatologist at Marshfield clinic diagnosed me with AS. I couldn’t start treatment because I lost insurance and moved cross country.

Then, my new rheumy in Denver didn’t know if he believed the diagnosis and I started testing all over again. He agreed with AS finally and then we tried Enbrel, Humira, then Cocentyx. Unfortunately, I had odd allergic reactions to each.

My new doctor is not convinced

Now, I’m in Wisconsin with a brand new rheumy and I get to start over. He also “isn’t convinced about the diagnosis”.
Waiting for the next MRI.

I know there isn’t a cure, but I’d at least like confirmation of what’s going on. I’d like to stop all the expensive testing to convince another doctor that I’m hurting. I’ve never been a complainer but I feel like a whiner now so I try to keep it to myself.

My story at this point is incomplete. Maybe it’s AS, maybe not, but maybe it is. So, I do my best to try not to aggravate things in the meantime. I’m working with a doctor to try to lose weight to take some pressure off my lower back. And I wait for my new rheumy. Fingers crossed! 😁

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