My name is Matthew Duerksen, I am 28 years old and I have Ankylosing Spondylitis (AS), which in a nutshell is a relatively rare form of arthritis that causes inflammation of the spine and sacroiliac joints. The condition is characterized as a progressive stiffening of a group of joints and ligaments in the spinal column, causing chronic pain and impaired mobility of the spine. As the patient’s spine becomes more rigid, multiple small stress fractures may develop and these fractures can be quite painful. If it becomes severe, ankylosing spondylitis can also lead to the fusion (joining together) of the spinal ligaments and discs between the vertebrae. For patients with ankylosing spondylitis, gravity tends to pull the body forward, and the patient may develop a flexed forward posture.
As far back as I can remember I was always a highly active person. I played many sports including soccer, basketball, wrestling, baseball and rock climbing to name just a few and I even enjoyed running. During the summer of 2007 all of that came to an end. My fiancee and I had been training for the Las Vegas Half Marathon, to try and get in shape before our wedding the next summer (2008). I woke up one morning and was nearly unable to walk and was experiencing excruciating lower back pain. I naturally thought it was a back spasm because of the running. Little did I know how serious the true cause was, and subsequently spent nearly three years in debilitating pain trying to find out what was wrong with me. My active lifestyle became non existent and everything from the way I put my clothes on to my relationships with my friends and family, changed.
I am an independent graphic designer. High private insurance costs definitely slowed down the process of getting to the bottom of what was causing my problems. Fortunately, my wife Jen began working at a hospital and I was able to get on her insurance plan around October of 2008. It was a great plan with very little money out of my pocket. I then began the process of visiting with doctors. Because we had an HMO, first it was our Primary Care Physician. She was the first to misdiagnose me with Spinal Stenosis. She sent me off to my first specialist, a neurosurgeon who didn’t know what was wrong with my back, but saw tremors in my fingers. He suspected it could’ve been Lou Gehrig’s disease. You can imagine how I felt with that (mis)information. I tried to be positive but that was very difficult.
I was then referred me to a neurologist who gave me the “all clear” and that it was nothing neurological. I was super excited about that, but now was back to the drawing board. The neurologist referred me to a pain management doctor. Same old thing here, they couldn’t come to a conclusion as to what the problem was and began prescribing everything under the sun. These prescriptions included physical therapy, pool therapy and at one point I was taking a combination of 32 pills a day including pain killers, muscle relaxers, nerve blockers etc. Nothing helped.
Finally, after nearly three years since that first day of excruciating pain, the pain management doctor randomly thought to refer me to a Rheumatologist. Before I saw the Rheumatologist, he requested I have X-Rays and MRIs completed as well as tested for the HLA-B27 gene, which I don’t have. After about two weeks I finally had my appointment, I went in and waited patiently and excitedly to finally have some answers. When he walked in he looked completely shocked. I asked him what was wrong. He said he hadn’t noticed my age on my chart. Based on my scans and blood work he thought I was an 80 year-old man and that he was going to tell me that I had cancer. I sure was glad that wasn’t the case! He took one look at me and said, “You have Ankylosing Spondylitis.”
In February of 2010, my life began to change. Even though it wasn’t the greatest news, it felt amazing to finally have an answer after nearly three years of suffering and not knowing what was wrong with me. Over the next few weeks I began to wean off all my previous medications and started to take Prednisone® (weight gain… more on that later!) and Methotrexate® (20mg/wk). After getting authorization from the insurance, I began giving myself Enbrel® injections once a week. It took several weeks before I started to see any relief of my pain and inflammation. I slowly started to feel better, but nowhere near 100%. So after a few months on Enbrel® and my blood work not where my Rheumatologist had hoped for, he decided I needed Remicade® infusions every two months. Initially he started me on a 500 mg dosage, we had seen a slight improvement but still not a whole lot. My dosage was then increased to 700 mg and that’s where my blood work started looking great again. When I first met with my Rheumatologist, my sed rate, or inflammation in my body, was a 81. Now it’s usually right around 7. Shortly after my diagnosis, I was also diagnosed with Crohn’s Disease, which is common in a lot of AS patients. Currently I am not taking any additional meds for this, as my Remicade® infusions treat this as well.
After being diagnosed and finally on a more effective treatment plan, I am now able to to participate in a sport that I couldn’t do for years…rock climbing! I now rock climb four days a week for three to four hours per session. With the occasional day trip to sport climb in Malibu or boulder at Stoney Point. I have been doing so for about a year and a half now. (There will be many posts on this since it’s a big part of my life now to keep me mobile and healthy.)
About 11 months ago, my family and I moved from Orange County to Los Angeles. After moving, I decided to stick with my OC rheumatologist. I felt obligated to stay with him – after all, he diagnosed me. So I made the trek every two months to continue my treatments with him. The long drive, as well as not feeling satisfied with the overall care I was getting, encouraged me find a new rheumatologist. As of August, I now have a new local primary care physician, rheumatologist and a new gastroenterologist. Shortly after making my first appointment, my new rheumatologist personally called me to see how I was doing as soon as he saw my chart and to let me know that he was going to get the authorization for my Remicade® infusions going right away since I need to have my infusion by September 18th to avoid a flare up. Let’s just say after that unexpected phone call, to say that I am excited to meet and chat with him would be an understatement.
Well, that’s the short hand of my story. I could probably write for days, but it would be a really long post. I will discuss many different things in more detail as well as things I left out in future posts. I am hoping that writing about all this will be a form of therapy and journaling my progress (struggles and successes) will help me to keep better track of my health and in turn to better treat and monitor my AS. If I can help even one person by sharing my story, even better!
PS: I am currently researching the low starch diet (The London AS Diet). I will be discussing it with my doctors soon to make sure there wont be any complications from me following this diet. If given the all clear, I will be starting that ASAP and will be blogging about it along the way so stay tuned!
Thanks for reading! Follow my story at http://www.standingtallwithas.com
California United States of America