My name is Carole-Ann Maltais. I am 50 years old and have just been diagnosed with axial spondyloarthritis, which my rheumatologist tells me is the first phase of ankylosing spondylitis.
I had my first flare up 17 years ago and have been on an incredibly long journey. I am HLA-B27+. I have been diagnosed with fibromyalgia, have had an optic neuritis, a pulmonary embolism, a brain tumor and craniotomy, severe degenerative disc disease in lumbar, sacroiliac spine and SI joints, degeneration in my cervical spine, herniated discs and sciatica, severe Raynaud’s disease, chronic migraines, calcific tendonitis in my shoulder and elbows, asthma, multiple lung and respiratory infections, multiple benign tumors, atypical cells bordering carcinoma in one breast following papilloma in breast ducts, menstrual issues leading to surgery, irritable bowel syndrome, bladder issues and finally debilitating pain and inflammation in all my joints. I have lost the use of my legs a few times and fought to recover my mobility. I have been fighting medical issues and the medical system for the last 17 years of my life. I even had a full psychiatric evaluation at the request of a neurologist who thought ”it was all in my head”. The psychiatrist encouraged me to find the answers to my physical issues as this was definitely not psychosomatic. I finally was referred to a rheumatologist (who was a second opinion) who recognized the symptoms and gave me a course of action to fight this. I have a strong family history of rheumatoid arthritis and AS on my mother’s side and my father has Crohn’s.
I have just recently started an intense regimen of Prednisone and last week started Methotrexate. Biologics are foreseen but will be tricky because of the history of optic neuritis, because it can trigger MS. I have hope that these medications will slow the progression of the disease and that the other medications I’m on will help me to live with the limitations that the disease has already imposed on my body.
The love and support of my husband and children have kept me going for all these years. At least now I don’t have to fight with my doctor anymore. Convincing my GP that my pain had to have a name has been draining, but I’m so glad that all those appointments finally gave a result. I’ve learned that you must be very persistent, document everything and keep pushing.
I have been following your site for a while now, and today I am adding my face to this group of incredibly tough people. Thank you for reading me.