My Diagnosis Journey
Updated: Jul 7, 2021
November 12th, 2019
One way to quickly connect with a fellow rheumatic disease warrior is by sharing diagnosis journeys. I say journey and not story because so many of us spend years in pain, visiting this doctor and that doctor, being dismissed or misdiagnosed before receiving the proper diagnosis. It is a journey! This is especially true for those of us with AS because it presents young and it primarily affects the spine (and for women with AS, since older studies incorrectly indicated that AS affects men far more often than women).
Looking back, I now realize just how long my diagnosis journey was. I believe my symptoms began in my late teenage years, which means I spent about fourteen years with pain, but no answer. It was only during the excessive stress of PhD comprehensive exams that my symptoms intensified, which sent me to a rheumatologist for a diagnosis.
Teenage Back Woes
I used to play sports. I used to mountain bike and ski. I used to be a basketball player.
My parents installed a basketball hoop off the side of the driveway and I measured and painted lines for a half court, where I played with my dad, brother, and neighbors. Occasionally, my dad would take us to shoot hoops at the middle school’s full-sized outdoor courts, where I was discovered by the coach of the girl’s basketball team and encouraged to join the team. Basketball became a big part of my life from that moment, through the end of my senior year as co-captain of the varsity high school team, and into my early twenties with frequent pick-up games with friends and neighbors.
During high school I began having trouble falling asleep due to pain in my lower back. While I had always been comfortable sleeping on my side, this new back pain and stiffness forced me to lay on my back with my knees up so my back could relax. The base of my spine between the 5th lumbar vertebra and the sacrum became sensitive, resulting in an intensely sharp pain when touched. At one point, my mother brought me to see a chiropractor, who struggled to pop my back and, in the end, only made the pain worse.
Knee pain and weakness began during high school as well. For several weeks one winter I limped around my high school halls in a knee brace. Without the knee brace, my knee struggled to maintain my weight as I walked. The athletic trainer was convinced I needed to build muscle in my knee to avoid further weakness and pain, which was not bad advice with or without a diagnosis! But these pains, I later learned, were not sports injuries in the typical sense!
Doctor Dismissals of My 20s
I was not actively searching for a diagnosis after high school, since my back didn’t hurt all the time. Yes, I had trouble falling asleep but I learned to work around that by falling asleep on my back first. After I graduated from college, I began working a retail management position since jobs were scarce at the beginning of the recession. Most retail positions require long hours, and many of those hours are spent on one’s feet. At some point, those long hours standing and walking became excruciating for me.
Dismissal number one: you’re too young to have back problems.
I consulted my personal physician about the back pain, only to be told that I’m young and probably have bad posture. Yes, I did have bad posture--partially from the scoliosis, which was also undiagnosed then!
Dismissal number two: take some pain meds and rest.
On one occasion, I had such intense back pain that I could not drive, so my mother traveled 30 miles to retrieve me at work, in the middle of my shift, and delivered me to the emergency room. The doctor I saw in the emergency room concluded it was a muscle strain (of course!) and sent me off with pain meds. What a fairly typical response!
Achieving little with traditional medicine, my grandmother referred me to her chiropractor. I was reluctant at first, since my previous experience with a chiropractor was anything but encouraging. I could only think of that chiropractor I saw in high school, as he pushed hard on my back, creating so much pressure in my spine that I thought I’d snap in two. This chiropractor was different. I explained my pain and previous experience, and she decided to use some type of laser therapy aimed at that sensitive spot at the base of my spine. As with other treatments, this did not help either.
30 Years Old and More Than Back Pain
At the age of 30 I received my diagnosis, but not because someone accurately assessed my back pain. I was in the third year of my PhD program at the University of Houston, preparing to take comprehensive exams. I was reading fanatically and writing concise notes on flashcards when my right hand started to hurt, then swell, then become so weak I could hardly cut my food or turn the key to unlock my apartment door. Having little time to dedicate to much else, I put off going to the doctor until my first round of comprehensive exams were over.
During the winter break my wife, my dog Texie and I went back to Massachusetts to visit my family. One long weekend during this visit I got so sick with body aches, chills, and fatigue I thought I had the flu. I would sleep for several hours, start to feel a little better while resting, then get up and feel fatigued again. My first flare, which I can only identify in retrospect.
Then my knee started acting up again. One evening as I was taking Texie outside, my knee became weak, I stepped wrong off the curb in the parking lot and hyper-extended it. It was time to see a doctor. My primary care physician had some blood work done and referred me to a rheumatologist. Since my blood work came back ANA positive, it was an easy referral, but the presence of auto-antibodies is not typical for AS, which makes me wonder what delays I might have experienced without the positive ANA.
The rheumatologist sent me for a whole host of x-rays and MRIs. The x-rays showed bony sclerosis at the inferior SI joints and facet joint deterioration in my lumbar spine. The MRI of my lumbar spine showed a whole host of other issues: disc height loss in my lower spine, degeneration, as well as a slew of disc tears and protrusions. What was most significant, perhaps, was the discovery that I have the HLA-B27 genetic marker. Additionally, since my peripheral joint pain was limited to my right side (asymmetrical peripheral joint pain is common with AS), and women are more likely to experience more peripheral joint pain and less fusing of the spine, by rheumatologist had come to a diagnosis: I have Ankylosing Spondylitis.
My immediate reaction was relief--finally I know what this is! The immediate aftermath was depression. During the spring of 2016, I spent lots of time in bed, not knowing what to do with my diagnosis other than read articles online and refrain from doing much of anything strenuous.
My wife was worried. I was worried. I didn’t know what I could or could not do. I knew basketball was out of the picture, as were other high-impact activities. I took a leave from school with little motivation to continue. At some point, it occurred to me that my life may be different going forward, but it was still mine and I needed to find a way to balance everything for the best quality of life. There were still lots of things that I could do, I just needed to learn what my limits were.
This blog is an attestation that I’ve continued doing what I love, in a moderated manner. While I cannot play basketball, I can still enjoy the outdoor activities of hiking and camping, with the right gear and with appropriate limitations. Sometimes I use trekking poles, sometimes I wear a knee brace, and sometimes I have to turn back sooner than expected. But I can still enjoy the backcountry and get outdoors! I hope this is true for others too!
I'm grateful to family for continued support and understanding. I'm especially grateful to my wife, Stacia, who has been there throughout my journey and will be for the journey to come!