Hello all:
I am new to this chat and have a rare form of CIDP that only affects the senses causing bilateral numbness. It took over 3 years and 6 different neurologists to get this diagnosis. After reading many descriptions of AS misdiagnosis on this chat I am very sympathetic with how frustrating it can be. I have a few questions and a little on my background.
My first cousin has AS after suffering since age 12. Years of different doctors with no diagnosis. Finally a nurse and PT figured it out.., she got the test and results showed the marker. She was in her late thirties and had actually been told by one doctor she was imagining things.
I’ve also been tested many times for the marker but results are negative. Test for B27 is negative. I compare my symptoms with my cousin and they are similar.
I’ve had 3 shoulder surgeries and upper back pain.
She has hip pain, lower back pain and several surgeries.
Both of us have back and neck pain. Both of us have irritable bowel syndrome (IBS) I cannot turn my head from side to side very far. She has difficulty walking.

My second diagnosis is osteoarthritis. Every doc I’ve worked with says wow that’s the worst osteoarthritis I’ve ever seen. (Well, maybe it’s the wrong diagnosis?)
I’ve read on the Mayo site that there is a second classification of AS where the marker is not present or cannot be detected … but symptoms are similar.

Has anyone gotten a diagnosis of AS with no corroborating test results?
I apologize for the long post. I’ve been searching for answers most of my life.

For those seeking pain relief, I’ve found that IVIG stops the back pain. (A serendipitous discovery that is meant for CIDP actually stops back pain too). I also have found that outpatient epidurals and RFAs (radiofrequency ablation) stops pinched nerve pain in the cervical spine and is much less invasive than spine surgery and you walk out same day. A good Physiatrist will specialize in this. It’s not a cure but can last 6 months to years.

MRIs show my spine is fusing. I work with a Physiatrist to stop the pain. Meanwhile I keep on searching.