When I was finally diagnosed with AS ion 2009, I believe that I was typical in terms of the amount of time it takes to diagnose AS. Recent studies indicate that it routinely takes between seven and ten years to diagnose the disease. I want to link to a very good article about the disease, progression and treatment options, and to encourage you to follow the advice in the article: write a careful, thoughtful, detailed summary of your symptoms, progression of symptoms, and any other conditions that may be present for you.
In my case, I was difficult to diagnose because as a result of significant joint injuries and a series of exceptionally invasive surgeries beginning when I was twelve or thirteen, I had osteoarthritis one would normally expect in a man seventy years old or more. I had symptoms in the hands, feet, shoulders, lumbar back, cervical spine, hips and knees. When I first saw a rheumatologist, the person found the history of surgeries, bone grafting, boring out of spine nerve openings, and combined with the x-rays that showed osteoarthritic changes, the rheumatologist stopped looking and told me that I would need joint replacement and that my problem was osteoarthritis.
Later on, as the fatigue and pain began to affect muscles and connective tissue like ligaments and tendons, I decided to see if perhaps the problem was metabolic. I have hypothyroidism, and when I saw an endocrinologist a complete workup showed that many of my pituitary systems were far outside normal ranges. After some evaluation and treatments, I was referred to a very experienced and exceptional rheumatologist named Steven Overman at the Seattle Arthritis Clinic. The endocrinologist believed I had an autoimmune connective tissue disease.
Dr. Overman did a complete workup, and after evaluating all the data, was able to tell me that yes, I had osteoarthritis, but the main problem, causing the connective tissue inflammation, fatigue, hip, sacroiliac pain and the pain from back injuries and arthritic changes (many of the facet openings were being filled in with arthritic material, causing the nerves to be compressed as they exited the spine). He also found osteophytes (arthritic bone spurs) at the point where ligaments and tendons attach to bone.
Finally, after ten years of declining health, chronic pain that seemed to get worse every year, fatigue that made the travel and long hours of my executive job more and more difficult, I had a diagnosis and could begin treating the root problem. The morning stiffness that lasted a couple of hours and sometimes more, the need to spend hours in a position that took the load off my spine and knees, the poor sleep and frequent interruptions, the increasing number of days when I was too fatigued and too sore, and somehow less able to concentrate…all could now begin to be treated.
I encourage you…don’t give up. Don’t assume you are just a wimp (I did!). Don’t give up when your first (luckily my Internist, Dr. Warren Fein, also saw the deterioration and was willing and helpful in pursuit of the cause(s) of my declining health and possible treatments – I’ll forever be grateful for such an exceptional GP to help me though my struggle to find a cause for truly life-changing health changes) or second or tenth doctor doesn’t get you some improvement. You have to be your own advocate and keep on working at researching your symptoms, finding possibilities and investigating them with whatever doctor you can at that time. The AVERAGE time to diagnosis for AS is 7-10 years. Don’t give up until you find some relief. Some AS patients are able to do amazing things after treatment – I know of one who ran a 5k. I am still very much in a place where I have trouble getting around, and have to conserve my energy every day, just to be able to do the most important things. But I have a path to a better quality of life, and I want that for myself, and for you, if you suffer from AS.
Please read the article below and start your own trek toward a better life.