Navigating the Maze: Inconclusive Tests and Life Beyond Axial Spondyloarthritis

By Tomesha Campbell

3 min read

Your results came back inconclusive. When I heard those words, I couldn't help but feel disappointed and a twinge of anger. After months of waiting to hear about the results of my genetic tests, hearing that, once again, they didn't have answers for the symptoms that have been slowly impacting my life was incredibly frustrating. If this is a past or current experience you're facing, I can only imagine the frustration you're feeling, too.

For those battling axial spondyloarthritis (AxSpa), the world of medical tests can be especially puzzling. You've likely experienced the frustration of inconclusive tests and the nagging question of what else might impact your daily life. This is especially true for those of us who have multiple conditions that we've been diagnosed with or are waiting for a diagnosis for.

Having gone through this experience more than once, I wanted to provide some insight on how to navigate the maze and manage the disappointment.

Sometimes we don't know what we don't know

First things first, let's talk about inconclusive tests. They're like those riddles with no clear answer - maddening, right? In the world of AxSpa, inconclusive tests are not uncommon. This could be due to many reasons, ranging from variations in test sensitivity to the complex nature of the condition itself.

So, what's a person to do? The key is not to lose hope. When faced with inconclusive results, it's crucial to engage in open and honest communication with your healthcare provider. If there is a close friend, family member, or therapist you can confine in, that is helpful too. They are all your partners in this journey, and together, you can explore alternative testing options or even consider seeking a second opinion.

When the symptoms go beyond AxSpa

Now, let's address the elephant in the room - the uncertainty surrounding what else might be affecting your life besides AxSpa. This is where it gets tricky, as AxSpa often brings along a band of mischievous companions, like fatigue, inflammation, and pain in various body parts. Identifying these additional culprits can feel like chasing shadows in the dark.

Once again, it's important not to give up hope that one day there will be an answer. For me, finding that answer has come in the form of thinking about my condition like I would if I were a medical detective. By that, I see my healthcare provider as my trusty sidekick, who asks the right questions to get us closer to what is the root cause of my symptoms. In my case, this has involved additional tests, consultations with specialists, and even some lifestyle adjustments. While we don't yet have an answer, we are taking a proactive approach that can help us get there.

How to navigate the maze

Now, armed with a clear understanding of inconclusive tests and the potential presence of other conditions, it's time to equip yourself with the tools needed to navigate this multifaceted journey.

The power of patience: In this quest, patience is your greatest weapon. Understanding that uncovering additional conditions may take time is crucial. Trust the process, and remember that you're not alone in this.
Embrace holistic care: Beyond tests and medications, holistic care encompasses lifestyle changes, physical therapy, and mental well-being. Do what brings you joy and seek support from friends, family, and support groups.
Educate and advocate: Arm yourself with knowledge about AxSpa and any potential co-occurring conditions. This not only empowers you but also allows you to advocate for your health.
Open communication: Maintain an open line of communication with your healthcare provider. Share any new symptoms or concerns promptly and actively participate in your care.

And remember this

You are not alone! Armed with knowledge and patience, you can navigate this journey with grace and determination. As you continue on this path, know that each step forward, no matter how small, is a victory. And in the face of uncertainty, your resilience shines through.

Any other tips you've taken to navigate the maze? Let us know below!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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LisaMichelle1092 Member
Hi, Tomesha, I seriously relate to this. It took more than 30 years of being dismissed, talked down to, surgeries, being ignored and being misdiagnosed before I finally received my diagnoses. And funnily enough, it was my optometrist who got the ball rolling. Autoimmunity is tough to diagnose. Especially when you consider that many of us remain in what's called a "subclinical" state for years. That just means that we have flares and symptoms that are somewhat ephemeral and hard to pin down. Blood work is high-normal or barely above the normal range. Nothing shows up on scans or what does show up fits another diagnosis. I recently watched a doctor talk about rheumatology. She said that autoimmunity lives in this gray area. It's not like oncology where it's black and white: you either do or don't have cancer. Rheumatology doesn't work that way. Autoimmunity is a puzzle and it often takes someone being under the care of a rheumatologist for a few years before a concrete diagnosis is or diagnoses are made. I totally agree with you about practicing alternatives therapies while waiting for answers. We need to find ways that make our painful journeys tolerable. One suggestion I'd like to add to your list is do your research. Don't go down any internet rabbit holes but do access sites like the NIH, NHA, PubMed, etc. Reputable sites. Read abstracts. Google images. Learn some medical terminology and anatomy. There is tons of good, scientifically sound information on YouTube. Being able to speak with doctors with a little bit of the vocabulary they use has completely turned my journey to diagnosis around. In fact, once my eye doctor opened the door of a possible diagnosis for me, I was able to research what test I needed and then ask my primary doctor to run that test. Within 3 weeks we knew that my blood was over run with antinuclear antibodies and the only explanation was some form of autoimmune disease. Thanks, for sharing some really great advice on "navigating the maze". Many of us do feel alone and your thoughts can help empower people. 
1. Tomesha Campbell Moderator & Contributor
 <inline-mention username="LisaMichelle1092" user-id="6222695"/>, I agree that accessing reputable sites for the latest research is an amazing tip! There are many open-source articles available online or accessed through the local library. I also appreciated your share about how researching tests helped you better communicate with your doctor. It definitely makes a difference when we're both on the same page. Thanks so much for reading and responding.
James Hollens Moderator & Contributor
Hey <inline-mention username="Tomesha Campbell" user-id="4753760"/> , I definitely feel your pain here, I have been given inconclusive results a number of times and sometimes I have been told that the hospital have just straight up lost the results! But I completely agree the key is to not lose hope and to keep pushing for answers. We all deserve the knowledge of what is wrong with our bodies! Wishing you all the best, James (Community Member)
1. Tomesha Campbell Moderator & Contributor
 <inline-mention username="James Hollens" user-id="2107776"/>, it's sad to hear the hospital lost your results! I cannot imagine how frustrating that had to have been. I hope they change their practices to ensure that doesn't happen again. You're so right about not losing hope. It's hard not to at times. I love communities like this to remind me that I'm not alone.