Although AS is a chronic debilitating disease, in some way I was pleased when I was finally diagnosed, as I had spent most of my life with constant back and neck pain receiving false diagnosis for many years.
Unfortunately for me, the final successful diagnosis occurred in 2009 when I was very far advanced with the disease.
My understanding is that AS usually occurs between 15 and 35 years of age, and rarely starts in old age. I was diagnosed at the age of 58 but now believe that my first symptoms of AS started back in June 1968 when I was approaching my 17th birthday.
My GP diagnosed it as a strained back muscle and referred me for a course of heat treatment. I attended heat treatment once a week for six weeks. I cannot remember if I had any relief from it, but do know that I was back at my GP in May 1971. My medical records record this visit as Slight stabbing pain in the back. Think he may have strained his back. Pain appears to be muscular. No further examinations were requested and I was prescribed painkillers.
During the following years I was back and forth to the GP, diagnosis ranging from trapped nerve, sciatica, strained muscles, all of which I am sure many readers will have also received.
In 2001 my back problems started to become unbearable and my visits to the GP increased significantly, together with various tests and incorrect diagnosis. I tried every alternate medicine known to man, including but not limited to herbal medicines, acupuncture, chiropractors.
In 2005 I finally got referred to a Rheumatologist, unfortunately not a very good one. His original notes to my GP were: “The patient reported severe pain in the neck associated with marked stiffness both in side bending, flexion and extension. He is in a great deal of pain, notably first thing in the morning and on occasions it is quite difficult for him to lift his head off the pillow. He has occasional cramping and locking of muscles. His neck movements are very compellingly stiff, particularly on lateral flexion and rotation. His lumbar spinal movements are moderately stiff in bending and flexion. I will arrange cervical spine, lumbar spine and chest X-rays and further investigations to the cause of the elevated CRP”.
Unfortunately, his final diagnosis was degenerative disc disease.
I become worse and returned to the same Rheumatologist in 2009 and after further tests he came up with the following assumptions: “His neck movement are compellingly stiff in flexion, extension and rotation. I thought his chest expansion was reduced and his spinal movements are also stiff. His ESR is 65 and CRP 62. I do not think we can say that he has HLA B27 negative ankylosing spondylitis. Furthermore as naproxen, diclofenac or celecoxib have not been beneficial I would suggest he reverts to paracetamol and codeine”.
Again I ended up with the same diagnosis of degenerative disc disease. AS was considered but discounted as the images at that time were for whatever reason either unclear or did not show sacroiliitis. The ESR and CRP inflammatory blood markers were again raised and my GP arranged for a bidirectional endoscopy. Although this showed up some polyps there was nothing to give any further reason for the raised ESR and CRP.
The pain was now constant through the day and night. My whole body seemed to ache and getting out of bed was like climbing Everest, I was very tired due to lack of sleep and although I was still working full time I was on the verge of stopping. There was almost no movement in my neck. I was now on tramadol to help with the pain.
My wife then read an article in the Daily Mail about a spinal surgeon who could do wonders for people with damaged spines. I believed I had degenerative disc disease so felt he might be able to do something with both my cervical spine and lumbar spine. I contacted his secretary to arrange a private appointment, as it would be impossible for me to see him on the NHS following my previous reviews. I saw him in November 2009 about 9 months after being discharged by the rheumatologist.
The surgeon was brilliant; he knew what I had as soon as I walked through the door. Although he only told me this on my third visit after reviewing X-Rays, MRI and CT scans.
Less than a month after meeting him he came up with the following comments: ” Having reviewed the CT scan of the pelvis which shows eburnation of both the SI joints, the left being worse than the right, it has been reported as suggesting a strong possibility of sacroiliitis. I think the CT scan with the X-rays and the elevated ESR and CRP do point to a diagnosis of ankylosing spondylitis. The patient needs to be referred back to a rheumatologist and go under the care of somebody as this is going to be a long-term problem”.
Obviously at that time I had no idea what AS was, but one thing was for sure, I was not going back to my original Rheumatologist.
The surgeon arranged for me to see a Rheumatologist he knew and at the first examination he confirmed the AS and immediately began the process of putting me an Anti-TNF biological treatment.
For me this drug has given me a life back and although now with a totally fused neck and a bent spine I can still work and knowing what disease I have adapted my lifestyle to accommodate it.