Hope you are doing well today. Are you having any additional symptoms? Neck stretches, strengthening have helped me. I did require a cervical surgery to enable room for the spinal cord, which did improve some issues for me.
Best wishes to you.

The pain-filled multi-year delay is common among us with AS. I also have a number of experiences with this. I understand the journey of frustrations, bewilderment, grief as well as the peace and clarity that finally arrives upon the correct diagnosises. It takes too long, I wish we could enable others a shorter medical journey.

My chiropractor, who has the additional training for treatment and diagnosis of such rare diseases, recognized the AS within a few seconds of first viewing the x-rays in 2015. The greater medical community dragged their feet but eventually recognized it, too. I eventually received a C2-C6 laminoplasty, open-gate and C6-C7 rural surgery for the impinged spinal cord. Eye-sight/headaches are still impacted by C1-Skull plate inflammation that includes all the occipital nerves and 2nd nerve bundles on each side. But, the surgery did improve eyesight from periodically blanking out, I just go cross-eyed now a bit during flare-ups. It is so nice to see, not pass out, and the migraines were reduced to mostly headaches!

Aside from the AS issues that started in 1969, the whole set of systems for food allergies related to the Latex allergy baffled doctors and convinced them that I was attempting to manipulate them. A doctor filling in for another recognized the history. He took 5 minutes of reading the medical records. The year 2005 "Severe Latex allergy" warning label, witnessed and documented by a doctor, was his clue. He provided an accurate food allergy diagnosis this current year of 2022, that has led to significant improvement for those symptoms. Hindsight, it should have been minutes and not years or decades to diagnosis.

I understand your pain-filled 3 year delay in the AS diagnosis of your neck.

I sometimes communicate with doctors about the need to bring into focus all the symptoms we report. Their response has been the medical/gov/insurance income standards for patient care gets in the way of timely, proactive good patient care. Many doctors express fatigue, and a growing dissatisfaction in our current medical clinical practices. Changes are urgently needed. Identifying meaningful changes with you and others here might enable better and more meaningful medical practices. We, all patients and doctors, need and deserve these changes.

I normally don't write this much and hope it is not a burden to you. But, your thoughts and feelings urged me to share this. You are kind, thoughtful, caring, and deserving of good support.

As far as celebrating New Years, my wife and I are also at home, making a nice meal after she returns home from her hospice work. We want to be home this year because of the recent significant rise in public illnesses and our disease related issues.

Hope your PT works well for you and wishing you a happy New Year's day at home!

Brian, thank you so much for the reply. I do appreciate hearing how this disease impacts others and how they deal with it.
One thing I do want to clarify is that it has taken me 15-20 years to get diagnosed which was in September/November of this year. I was surprised to read my medical records and see the AS in my neck. I guess that explains why my neck always hurts and sometimes is on fire.
I am thankful to finally have answers but it is so hard to deal with.
Thank you for your kind words and responding. I hope you have a nice New Year’s Eve. Mine will be very quiet. That is the way I like it.

Hi Brian2! Yes, my neck hurts everyday. I see a chiropractor twice a week or I am in agony.
I had a double fusion in 2020 for Myelopathy but was never told about AS in my neck until now? Also, the surgery was C5&C6. So much lower than my upper neck. I’m not surprised I have that but surprised it took almost 3 years to find out. I will be starting pt soon. I hope you are doing well and Happy New Years! Do you have any plans? Hubby and I have a date at home I guess. 🥰