AiArthritis logo showing stylized infinite loop symbol in red with black dots, above organization name for International Foundation for Autoimmune & Autoinflammatory Arthritis.

Undiagnosed or the "Mystery Patient"

More than 50% of all persons eventually diagnosed with AiArthritis diseases are either initially diagnosed with a form of Undifferentiated Disease (i.e., Undifferentiated Connective Tissue Disease, Undifferentiated Spondyloarthritis, etc) or go undiagnosed for too long. Matter-of-fact, this nonprofit was founded because of a mystery patient - we understand!


These comprehensive tools have been specifically designed by patients and caregivers to provide you with the help and support you need while navigating the complexities of the healthcare system during the diagnosis journey.  View our resources to learn more about AiArthritis symptoms, potential conditions, and find tips for communicating with medical professionals as you search for answers.


These AiArthritis resources were hand picked by our staff and volunteers who all know what it feels like to search for a diagnosis. When we were going through this, we wanted more information about what these symptoms could be, how to communicate them to health professionals, possible treatments, and where to meet others to talk to about this. We hope you find these resources helpful to enable you to be empowered to take charge of your journey and find the support and guidance you need.

RESOURCES FOR mystery patients

Mystery Patient Guide

At AiArthritis, the number one question we get is: "Why won't they diagnose me?" We've heard countless stories of patients waiting 3 months to over 15 years for proper diagnosis and treatment.


We aim to find innovative ways to help bridge that gap and expedite detection and diagnosis and this is one of those ways. This is a living document, meaning your contribution will continue to help us to improve our guide.

Download Guide

Common Biomarkers

This resource post explains the importance of biomarkers in diagnosing and managing autoimmune and autoinflammatory arthritis diseases. It helps you to understand what biomarkers are, how they are used, and why they are essential for monitoring disease activity. Downloading this resource will benefit anyone looking to gain a clearer understanding of their condition and how biomarkers play a role in their treatment journey.

Learn More

Diagnosis Equation

Through talking with fellow patients, we realized a potential solution to expediting diagnosis may be as simple as an equation: AUTO + Inflammatory Arthritis = X. And, if not X (one of our diseases), then maybe it's Y or Z. Given the frequency of fibromyalgia as a misdiagnosis or comorbidity, and the new realization of IgG4 Related Disease ("IgG4-RD") being detected in many with our diseases, we chose these two as the OR Y and Z diseases.

Learn More

Other Resources

  • Disease List: Could you have an AiArthritis disease? Learn more, each disease listed breaks out to its own page.
  • OA vsAiArthritis e-Book: Learn the differences between osteoarthritis and autoimmune or autoinflammatory arthritis diseases
  • Treatment: Goes over some different types of treatment, both pharmacological and non-pharmacological
  • AiArthritis Blog


Have more questions? Email us at info@aiarthritis.org

Talk Show Episodes For Navigating the Diagnosis Journey

When patients are in search of a diagnosis for suspected autoimmune or autoinflammatory arthritis, they can often feel overwhelmed by the abundance of intricate medical information out there. While it is crucial to consult with healthcare professionals, our AiArthritis Voices 360 Talk Show - which is led BY PATIENTS - serves as a valuable additional resource for individuals navigating the diagnostic process.


We have selected some episodes we think may help you in your journey diagnosis:


  • Ep 1: The Mystery Patient - How AiArthritis Came to Be

    This week Tiffany is joined by Kelly to talk about their experience of being Mystery Patients and to share their diagnosis story.  The route to diagnosis and treatment is often long and complicated, but it shouldn't be.  The discussion also gives an overview of the goals of the podcast by giving an overview of The International Foundation for Autoimmune and Autoinflammatory Arthritis, what we do, and invites all patients to the table to talk about their experiences as "the mystery patient".



    Listen

  • Ep 6: Diagnosis STAT!

    This episode join your host, Tiffany, as she and co-host Suz Schrandt discuss the importance of early detection and diagnosis. They address barriers to receiving an accurate diagnosis, as well as what patients can do to increase their chances of receiving an accurate diagnosis in a timely fashion. Research consistently shows that early intervention improves patient outcomes. Whether you are a patient looking to confirm the accuracy of your diagnosis or avoid diagnostic delays in the event of new disease onset or a member of the public wondering if you or someone you love could be experiencing the onset of a rheumatological disease, this episode is a must-listen!



    Listen

  • Ep 41: Biomarkers - Diagnosis, Disease Management, & even PREVENTION?!

    Tiffany and Patrice discuss the importance of biomarkers. Do biomarkers hold the key to understanding disease severity and predicting disease onset?



    Listen

  • Ep 82: AUTO + Inflammatory Arthritis: Diagnosis, Please!

    Join us for this episode where the co-hosts, Tiffany and Leila, share their personal journeys of being diagnosed with AiArthritis diseases. Tune in to hear how their journey of being diagnosed and misdiagnosed and the lessons they learned throughout the process. 



    We also delve into the exciting new resource tool developed by AiArthritis, which helps patients navigate the process of seeking a diagnosis, understanding symptoms, and asking the right questions of their doctors. Plus, we invite other patients to share their stories and provide insights for those just starting their Auto + inflammatory arthritis journey. Join us for an informative and uplifting conversation on Auto + inflammatory arthritis diseases.

    Listen

  • Ep 84: I'm a Mystery Patient, Now What?

    Have you ever experienced the frustration of not being able to get a diagnosis, or worse, receiving the wrong one?



    In this episode, our co-hosts Tiffany, Kelly, and Kerry, dive into what it is to be a mystery patient. In addition, they each share their personal experiences of being a mystery patient, and the challenges they experienced with delayed diagnosis. Whether you're a mystery patient or have had similar experiences, this episode sheds light on the lessons learned, triumphs, and struggles that many face and why your story matters. Share your story with us today at aiarthritis.org/mysterypatient and help us all learn more about AiArthritis diseases.

    Listen

  • Ep 90: Why Won't They Diagnose Me?

    At AiArthritis, we represent those diagnosed, their care partners/support network, and the undiagnosed (often called the “Mystery Patients”). This episode is for those struggling to get diagnosed. Join co-hosts Tiffany, Kerry and Danielle as they share their personal diagnosis struggles and delve deep into the challenges many other patients face on their diagnosis journey. From navigating initial symptoms to facing dismissive healthcare providers due to 'normal' blood work, we're talking about common hurdles that delay diagnosis, then encouraging YOU to share your experiences and perspectives as well. Together, we will create a Patient-Led Guide to an AiArthritis Disease Diagnosis.  



    Listen

Share Your Story & Get Involved!

Sometimes the best medicine is diving in to learn more, meeting those who have similar lived experiences, and doing activities that can help to improve your health and the AiArthritis community!

Where to Start:

  • Follow AiArthritis on Social Media:
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Share Your Story:

Being a mystery patient and seeking a diagnosis can a tough, lonely, and frustrating journey. Your story is unique and can potentially help us to help other patients. What would you want fellow patients to know about YOUR diagnosis journey ? Your patient-identified issues can aid us in creating patient-infused solutions.

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