From One Illness to Another: My Diagnosis Story Part 2
Editor's Note: You can read the first part of this story here.
By September, I had had enough of it all. I decided I would first address my jaw again, after all, the doctor had said the fatigue was from the pain. I figured if I could figure my jaw out, then that would also get rid of the fatigue that had been plaguing me for months.
After several different appointments, it was determined that my immune system had “over healed” the site of the infection. Apparently, this had created a buildup of scar tissue that needed to be removed. I found this odd, but didn’t ask questions. I was ecstatic. Things were finally looking up! I scheduled my surgery for the second week of October and headed to the beach. It was on this trip that I realized I couldn't ignore my back any longer.
No longer just a back ache
This was my second road trip in two months, and I realized something about sitting for long periods of time was making things worse. The stiffness was so severe that I was unable to stand up straight. My left hip felt as if it had a knife lodged in it, and I started experiencing shooting pain down the back of my legs. I dreaded getting in the car to go anywhere because I knew getting out was going to be difficult. I also started forgetting what I was talking about mid-sentence, and that was absolutely terrifying. It became apparent at this point that I needed to see a doctor, and fast.
My first round of tests
I had my jaw surgery three days after we returned from our vacation. I wasn’t mad about the pain medication I was prescribed because it blocked all of the pain in my back. Four days after my surgery, I headed to my PCP. She asked me a series of questions and performed a physical examination. She decided to order MRIs of my lumbar and sacrum and told me she also wanted to run a rheumatoid panel on me. I had no idea what that meant, but I agreed.
A week later I got a call from my doctor who told me I was HLA-B27 positive and I was referred to a rheumatologist. I did a little googling and was shocked by what I was reading. Ankylosing spondylitis. Strange name, but I had every single symptom to a T. This had to be it, there was absolutely no doubt in my mind.
First rheumatologist fail
When I got to the rheumatologist the following week, things had really gone downhill fast. At this point, I was having a hard time walking and getting around. I literally had pain from head to toe, along with an array of other various symptoms. It was as if my body was waging war on me, and the progression was alarming. She proceeded with her examination and looked over all of my lab work and recent MRI and told me it was “highly unlikely” I had ankylosing spondylitis because it is "mostly found in men." I did, however, have some degeneration in my L5-S1 and she referred me to physical therapist (PT) and told me to come back in a month.
Tremors and twitching
I decided to go ahead and start the PT, but I also took it upon myself to schedule an appointment with a spine specialist. PT was a nightmare and seemed to only make things worse. I began to experience tremors and my body would twitch uncontrollably for hours on end. My appointment with the spine doctor was scheduled an hour after my third PT session. When I walked in and he saw my body reacting the way it was, he knew something was not right. He ordered an x-ray, and what he found was a bit daunting. To his surprise, in the three weeks between my MRI and that Xray, my SI joints had started to show wear. “Classic onset of ankylosing spondylitis”, he told me. I was speechless. He suggested I stop the PT and find myself a new rheumatologist.
A quick diagnosis
This time around, I did my research and sought out the most well-respected rheumatologist in my area. The day of my appointment my body was in so much pain and shaking so badly that I had to have my mom drive me. Within 5 minutes of the doctor looking over all of my imaging and hearing my story he confirmed that I did, in fact, have ankylosing spondylitis. He also informed me that there was a good possibility that the infection had triggered the onset of the disease. Everything suddenly seemed to come full circle and finally make sense. I've honestly never been so relieved to receive bad news in my life.
Trust your instincts
The ride home I was in a state of pure bliss. I finally had the answers I was searching for, which meant relief was on the way. Since receiving my diagnosis, I’ve continued to follow my treatment plan outlined by my doctor and things have improved drastically. If you’re still searching for answers, my best advice is to listen to your instincts and don’t lose hope. Keep persisting and advocating for yourself. The journey to diagnosis can be tough, but I promise you in the end it is worth it.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?