Navigating the Maze: Inconclusive Tests and Life Beyond Axial Spondyloarthritis

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.

1. 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.
2. 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.
3. 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.
4. 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!