The journey to an AS diagnosis can be frustrating and confusing
Finding answers to questions about AS symptoms can be a daunting task
It’s no wonder it can take such a long time to diagnose ankylosing spondylitis (AS), in a process that involves a lot of confusion along the way. Maybe your family is surprised when you explain that your symptoms have changed from yesterday. Or perhaps, like me, you’ve found that some doctors seem to have difficulty providing answers.
A few days into my latest sacroiliac joint flare-up in January, I realized that I couldn’t even pull my pants on. So I booked an appointment with a local family doctor. My next appointment with a rheumatologist at the hospital was still an eternity away. (OK, it was six months away, but when you’re in pain that seems like eons.) I needed immediate medical assistance to help my body break free of the cage that inflammation had trapped me in.
At the appointment, I gingerly lowered myself into the plastic doctor’s chair, trying to ignore my screaming lower back. I explained to the doctor that I’d been diagnosed with AS several years ago, and I was experiencing a flare. I detailed the symptoms, what I’d already tried to remedy it, and what I believed was the cause.
Unfortunately, the general practitioner didn’t have extensive knowledge of ankylosing spondylitis, and I found it difficult to get reassurance and assistance. The doctor wanted to send me for tests and scans I’d already had long ago, which surprised me. To receive my AS diagnosis, I’d had X-rays and an MRI at the hospital and tested positive for the HLA-B27 genetic marker, which is a gene commonly associated with rheumatic diseases including AS.
Though I was frustrated that I didn’t have a positive outcome at the appointment, I shouldn’t really be surprised that many in the medical community — from doctors to physiotherapists — don’t fully understand AS. After all, according to the Johns Hopkins Arthritis Center, the prevalence of AS in the U.S. is approximately 0.2-0.5%.
Because medical practitioners likely only rarely encounter people with AS, I can understand why they might seek facts and validation before offering assistance. To patients who are desperate for help, though, it can be confusing when we have to jump through hoops and even be incorrectly diagnosed while on our path to finding the truth.
What’s so bewildering about AS?
I find AS to be particularly confusing because the symptoms seem to move around my body and appear or disappear with little provocation. Another perplexing factor is the difficulty in receiving a diagnosis. My husband, Dave, who also has AS, suffered over a decade of debilitating symptoms that seemed to leave doctors just as confused as he was.
During the process, it often seemed that he was prescribed treatment as a box to tick on a long list of possible conditions. His hip pain and hamstring stiffness were originally attributed to piriformis syndrome. The prescribed treatment seemed to initially work, but ultimately, it didn’t help. Dave’s supposed muscle imbalance also wasn’t remedied after years of exercises prescribed by a physiotherapist. An ultrasound-guided cortisone injection to the hip joint brought him no relief.
His condition was a human-sized question mark. Every time a medical suggestion failed, I would see the bewilderment and frustration on his tired face. Prolonged confusion about your pain is truly exhausting.
It wasn’t until he’d run the gamut of tests and potential treatments that he was sent for an MRI and an HLA-B27 blood test. After that, he finally received an AS diagnosis and could access the correct medication and assistance through the hospital’s rheumatology department.
How I navigate confusion
These days, I expect a certain level of confusion when it comes to our AS journey. After five years of symptoms, I’ve realized that my pain can ebb and flow based on many factors, from stress levels and hormones to the weather. I no longer put my brain through the wringer trying to figure everything out.
A few things that help me in times of frustration include:
- Recording my symptoms and treatments in a diary or app
- Telling my partner how I’m feeling (and letting him know that, yes, it’s very confusing)
- Focusing on positive things I can control such as eating healthy food or laughing at a comedy on Netflix
- Seeking a second opinion from a doctor or specialist as needed.
If you’re feeling confounded by AS, please know that you’re not alone. You’re not crazy or imagining things. I’ve found it to be a tricky and unpredictable disease on all levels.
Did you find this column helpful or insightful? Please share in the comments below.
Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.
A key phrase resonated with me: "I no longer put my brain through the wringer trying to figure everything out." I remember someone writing on a support group 25 years ago: " The illness is not a person." Something most sufferers will understand.
In hindsight the best thing that happened to me was joining that support group and the second best thing was moving on with my life and not reading the posts all the time.
Six years of unbearable pain was followed by 5years of acute pain and then slowly fizzled out to just something in the background that reminds me every now and again.
I saw a gastroenterologist the other day who said it is good to be "on the books" with a rheumatologist in case of a flare up later in life. Following your post I have again be reminded to make work of it.
Good luck to you and your husband.
Support groups can be excellent, but I know what you mean - sometimes I really enjoy hearing all the stories from a few online support groups, and other times I'm not in the right frame of mind and have to take a little break.
Great to hear your AS seems to have improved enough to fade into the background, do you think it was something specific that helped?
I'm always interested in hearing any tips and ideas!
Barb Hale Terpening
Thank you to both you and your husband for sharing your journey with AS. In a way it makes me feel a bit less lonely in my own dealings with the disease. As many people know most people wit an autoimmune disease don’t have just one but several autoimmune disorders. A couple of years ago I was diagnosed with Myasthenia Gravis and peripheral neuropathy which is very uncomfortable. As my neurologist explained to me I have to treat the most serious condition ( that being Myasthenia Gravis) and the AS goes by the wayside.
Thank you for letting me vent, but mostly thank you for sharing. If does make a difference.
Oh gosh that must be hard dealing with several autoimmune diseases at the same time - are you able to get any treatment for your AS? I've heard that it's pretty common to have a few simultaneously, our poor immune systems must be going crazy. I'm not sure if you're aware, but BioNews also has a website specifically for MG with some lovely columnists sharing experiences that you might find interesting, it can be found at https://myastheniagravisnews.com
Thank you so much for commenting Barb, I always appreciate hearing about everyone's journey, and hope I can keep sharing stories you can relate to!
As always, I relate to most all of what you write. "I couldn't even pull my pants on" is yet another perfect example. "Reaching into the refrigerator was a task" is one I expect you'll write someday. When I told (my great destination) rheumatologist about the stiffness that would just roll in all at once (in various places like legs) and could eventually go away just the same (as one of the initial things I told him), he said it was inflammation which can literally move around like that. This was before he diagnosed AS. He asked if I had pain overnight. He was on the right track. Almost two years and several doctors earlier, my HLA-B27 test came back negative. They should probably stop giving this test. I had problems all over so back and sacroiliac (while bad) were comparatively low on my list at the time. Putting our experiences together and the general lack of knowledge about AS, I now assume even most medical professionals know little (to nothing) about AS. I don't blame most of them. Ophthalmologists couldn't correlate my complaints of chronic iritis (with dry difficult to focus eyes) or my many retinal tears (all saved in the nick of time) with AS even when I told them. The key event in my journey was me repeatedly begging for an MRI on my lumbar spine to go along with a cervical MRI (not knowing what I was looking for in the lower spine) as I had been asking if something in my lower spine could be affecting my legs. It was a key event even though two separate neural doctors (I had gone through two rheumatologists before that) separately received the MRI report and both completely missed that ankylosing spondylitis was reported for the sacroiliac! I had to give up on getting a diagnosis for most of year but I least I had the luck to formally request getting my own copies of the MRI's. Eventually my PCP suggested to try a rheumatologist again which I did because I was incredibly bad off. I was able to provide the key MRI to my destination rheumatologist which enabled him to confirm his diagnosis. (He was shocked AS had been missed.) The rest is history and reading accounts like yours, Jemma, Janneke's, and others has meant everything to me. While we have quite unique stories, we share a lot.
George I completely agree with you about the HLA-B27 test. I test positive, but my sister who has AS also tests negative and she found it incredibly difficult to get diagnosed. It sounds like you had many indications of AS, including the chronic iritis, thank goodness your eyes were saved in time. I really enjoy hearing the details of your story, it's very validating to hear the twists and turns of other people's journey with AS.
I forgot, "hamstring stiffness" which I experienced, is something I rarely hear about. My hamstrings were on fire after the last time or two I went cycling (although it may have been after running - too long ago to be certain) as my AS finally exploded. I didn't even know those bands on the back of the legs were hamstrings. Muscle and tendon problems, rather unfortunately, are rarely part of the AS description. Recently, I read that inflammation where ligaments attach to bones has a correlation to AS. I found this when I was researching synovitis and AS. I surmise I have a rare problem with synovial fluid not getting into knee cartilage unless I run a little and I discovered my need for running when I was young, decades before AS kicked in hard - so it's highly likely it has nothing to do with AS. But I was reading about synovitis because synovitis has a relation to many autoimmune diseases like AS. It was then I found (in one online article) that for AS, synovitis is secondary to inflammation where soft tissue goes into the bone.
This is so interesting to hear you had issues with hamstrings too! Gosh it's tricky to figure out. Every story and comment like yours might help someone piece together their own symptoms, so thank you.