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I was diagnosed in 2016 with AS. At the time I had back pain with stiffness at rest and upon waking for 30+ min - 3 hours or so., chronic uveitis, hlab27 +, jaw pain, foot pain, and tinnitus. I was at the point they were going to put me on TNF. Scans came up clear and another rheumatologist undiagnosed me and said mechanical back pain since I wasn't in as much pain.
I've had several flares over the years. Fast forward to this year, and I've had this awful buttocks / alternating hip pain and… read more
@A MySpondylitisTeam Member thank you, and I'm sorry you are dealing with all this as well. I later went back and had an MRI and showed damage done. I have since been diagnosed with AS. They should have never undiagnosed me as I had all the signs of non-radiographical AS.
There is a type of spondylitis that does not show up on xray/scans. I had lots of pain that wasn't constant before getting diagnosed with AS. I had three herniated discs and after multiple epidurals, my first pain management doctor diagnosed me with AS. He is retired and my newer pain management doctor told me my back is a mess, now 5 herniated discs with other autoimmune illnesses. Perhaps a second opinion, you need to find the proper medical professional to help you. Hugs to you.
@A MySpondylitisTeam Member hindsight 20/20, but, I did listen to all the Drs. The Dr is supposed to figure it out, not the patient. Now I know to push for answers. Usually I just keep letting it go.
It feels like your hip bit it’s your vertebrae on a nerve. You should have listened to the first doctor.
@A MySpondylitisTeam Member well now this makes more sense. I just got an update and my MRI DOES show bilateral sclerosis of SI joints and possible erosions too. So my rheumatologist will be setting up a phone appointment. He said in email that it is showing spondyloarthritis ... not sure if they'll be able to narrow it down more than that. Happy I am getting somewhere, but sucks it caused damage.
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