My Story begins when I was still a child of about 14 years old. I was always told to stand up straight, and my posture was a problem. Also kids of such a young age do not suffer from back pain. It was merely analysed as growing pains. Moving forward as a young adult in the 80’s I managed to complete military training and in hind sight most probably would have been put on light duty if they and I knew I had AS then.
As the search continued for why I have so much pain I was diagnosed with having a terrible accident as my C3, C4, C5 and C6 disks are narrowed to the one side indicating a compression of my back. I have never been in such an accident. I was put on anti-inflammatory drugs, and if the pain was too much got cortisone injections in my back.
In the 90’s and yet another doctor and round of x-rays I was told that they think something else is wrong. I was diagnosed as having Scheuermann’s disease. Looking back at the report now after I was diagnosed with AS in 2015, Genetic marker HLA B27 was present then, but either missed by the doctor, or not knowing what is was. So I lived with more incorrect anti-inflammatory drugs and pain killers.
Through all this I lead an active life playing badminton and squash. My work was physical. I had to carry equipment, set up PC’s crawl under desks sometimes, and this became harder and harder. If the pain was too much, or as my neck would sometimes just be very sore I was sent to Physio. I was put in traction to straighten my back. Again, it was totally the incorrect thing to do. My wife and I also restored an old house with lots of hard labour. It was a spiral. Pain got too much, more painkillers.
In 2015 I had a minor bumper bashing. I battled with a pinch nerve in my back due to the accident that did not want to let go. Ex-ray’s was taken again of my back and neck. My GP then decided to send me for Physio again. After several sessions of Physio, acupuncture and some more traction treatment he told me that he cannot help me and the nerve must release itself. The worst part of the Physio was that after each session I was worse for wear and so sore. Physio is supposed to help right.
My sister is working for a Neurosurgeon, and decided to ask him if he can help. He decided to do an MRI of the cervical spine and some blood tests. He also gave me a neck brace to wear for 6 weeks. The neck brace released the nerve, but I got a call to come and see him. He told me that when he saw me he knew he had to test me for AS. The MRI and blood test confirmed his suspicion of something else going on with me. He referred me to a rheumatologist and she started me on my course of medication. I was told to stop playing Squash and badminton and rather go for walks.
It took a favour from my sister to eventually have me diagnosed. Was I lucky, I think yes? It seems that even in the medical field, Ankylosing Spondylitis is such a rare disease that it is overlooked / discarded. If you do not have a trained DR. who spots this and directly test for AS you can go undiagnosed forever. I count myself as one of the lucky ones. I was diagnosed at age 51. I still have pain even with the meds but not as severe as before. I do believe the correct medication works.
AS will not go away and it will get worse and it is a long road ahead. I do have an awesome support system in my wife and two kids and that keeps me going. My biggest motivator is my wife. Days when I feel I do not want to walk she will just mention it, and I will give it a try. Sometimes all you need is a little push to carry on. I don’t know where this scary, unknown road is leading me to. All I know is to take it one day at a time….