In honor of World Arthritis Day, I have decided to finally share my story regarding my diagnosis with Ankylosing Spondylitis.
Ankylosing Spondylitis(pronounced ank-kih-low-sing spon-dill-eye-tiss), or AS, is a form of arthritis that primarily affects the spine but it can also affect other parts of the body including eyes, hips, feet, ribs and more. Symptoms include pain, discomfort, inflammation, fatigue and in some cases fusion of the spine, pelvis and in some cases other joints.
A.S is diagnosed with the use of X-rays and MRI as well as lab tests, while there is no actual blood test for A.S, certain blood tests can check for inflammation markers as well as the HLA-B27 gene. Many people who suffer from A.S carry a gene called HLA-B27, while many who don’t have the gene suffer from A.S, some people who do have the gene never develop A.S. Treatment options for A.S include Nonsteroidal anti-inflammatory drugs (NSAIDs), TNF blockers, Physical Therapy and more.
My Story:
I have suffered from chronic pain for over a decade. I remember being 13 and suffering from INTENSE pain in my hips and ankles, I was bounced doctor to doctor and told it was everything from growing pains to tendonitis to issues with my weight(I have always been considered obese according to the BMI chart). We tried many treatments which included at one point putting my ankles in casts to held “stabilize” my growth plates. A few years passed and I went back to the same orthopedic specialist who took multiple x-rays, said everything looked fine and sent me on my way. I
I returned to my regular primary care doctor begging her to do something because I was in debilitating pain, I was fatigued constantly and struggled with basic tasks like P.E and even walking to class. My doctor was completely convinced it was my weight and told me to try and slim down, with much success I was able to drop some weight and started working out on a daily basis. I felt great….until I would get home, It always felt like I got hit by a truck and remember sitting in bed SCREAMING because my legs hurt SO bad. My doctor was still convinced it was a weight issue and I was just “out of shape” and told me to continue to exercise and things would get easier…they never did so for years I just worked through the pain.
Fast forward to 2010, I started to decline QUICKLY, I started falling often and had a really hard time getting around and doing simple tasks. I ended up getting a new doctor and started seeing her for my care. She was a little baffled and ordered blood work…Most which came back normal except for my inflammation markers which were in the 40s. She referred me to physical therapy where I did three rounds with very little success. Over the next few years, there was a lot of blood work, x-rays and even a few MRIs with no progress on a diagnosis so I received a blanket diagnosis of Chronic Pain. Over the next few years, I spent a lot of time at the doctors having test after test performed and every time the results were always labeled as inconclusive. We did, however, discover during one of the x-rays that I had developed a bone island which is a bone tumor and that I was suffering from a “mild case” of what was thought to be degenerative disc disease. I was then referred to a surgeon who stated it was NOT degenerative disc disease and that I was not a candidate for any sort of surgery.
Back to square one, I was! My primary care doctor was completely stumped and decided to send me to the local spine center where I did another round of physical therapy and had two lumbar steroid injection that did aboustely nothing. I was actually experienced MORE pain and stiffness after the second injection so I refused a third. The doctor at the spine center began to discuss with me the possibility of medical marijuana because he had other patients who had a lot of success with treating chronic pain and inflammation with the use of topicals. I applied in February of 2017 and was approved a few months later. I met with the local dispensary and started using topical products which I found helped both my pain AND inflammation without clouding my mind.
I applied in February of 2017 and was approved a few weeks later. I met with the local dispensary and started using topical products which I found helped both my pain AND inflammation without clouding my mind. I was discharged from the spine center shortly after and a few months later I found out my primary care doctor was leaving and I was assigned a new one.
On our first visit, she looked through all of my past lab tests and was baffled at why I was never referred to a rheumatologist, especially since my inflammation markers were ALWAYS high and that whenever I visited the ER in intense pain(I would visit the ER when my pain was unbearable) that I always reacted very positive to ketorolac injection(I would often visit the ER unable to walk and leave in absolutely no pain). She promptly put in a referral to the rheumatology at Dartmouth and a few weeks I received a call.
I met with the rheumatologist who was AMAZING! She looked through all my paperwork, ordered some new labs and also x-rays and an MRI of my hip joints which had started bothering me SO bad over the last few years that I could drive and often struggled to do simple things like walk across my house. She stated to me she had a STRONG suspicion it could be Ankylosing Spondylitis because of my elevated inflammation markers, my symptoms and small signs on past imaging tests.
A few weeks ago I went back for my test results and while I tested negative for the HLA-B27 gene, symptoms of A.S showed up in my imaging which included a “thickening of my pelvis” as a slight fusion of the sacral joint. That day was the day I FINALLY received a diagnosis after over a DECADE of being shuffled doctor to doctor being told nothing was wrong with me. I recently started a treatment plan which includes the use of the NSAID meloxicam and I have very high hopes that my treatment plan will be successful! My rheumatologist is AMAZING and I’m so glad she refused to give up(those were her EXACT words to me because I had expressed how dissatisfied I was in the past being shuffled doctor to doctor).
I have very high hopes for the future and plan to raise awareness about A.S in whatever way I can because I am frustrated that a large portion of the medical community has actually never heard of it.
To learn more about Ankylosing Spondylitis please visit spondylitis.org