“Your MRI/CT Is Normal” But Your Body Says Something’s Wrong: Why Standard Imaging Often Misses Key Issues in EDS/HSD
For people with Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD), hearing “your imaging looks normal” can be incredibly frustrating—especially when your symptoms are anything but.
The Problem with Standard MRIs and CTs
Most imaging—like MRI (magnetic resonance imaging) or CT (computed tomography)—is performed while lying down, without movement or the effect of gravity. That matters.
In hypermobility-related conditions, joint instability, cervical spine issues, and nerve compression often appear only when upright or during motion—meaning they may not show up at all on standard imaging.
What Standard Imaging May Miss:
Joint instability that only occurs with motion or load
Cervical instability
Soft tissue damage, muscle dysfunction, or nerve impingement
Subtle structural changes that still cause major symptoms
"Normal" Imaging Doesn’t Mean "Nothing’s Wrong"
People with EDS or HSD often report:
Widespread, chronic pain that doesn’t match imaging
Dizziness or lightheadedness, especially when standing
Fatigue or brain fog
Gastrointestinal (GI) issues like nausea, bloating, or constipation
Pain worsened by posture or prolonged sitting or standing
Too often, they’re told:
“There’s nothing there.”
“It must be anxiety.”
“You’re fine.”
This dismissal can delay diagnosis, lead to mislabeling, and prevent effective treatment.
The Risk of Over-Relying on Standard Imaging
When “normal” scans are used to dismiss real symptoms, it can result in:
Misdiagnosis or no diagnosis at all
Ignoring a detailed symptom history
Missing signs of cervical instability
Lost time and support—sometimes for years or even decades
A Better Approach
Dynamic imaging, including Upright MRI, can sometimes reveal serious issues standard scans don’t detect, like cervical instability.
What You Feel Is Real
You don’t need imaging proof to validate your experience. Pain, instability, and dysfunction that don’t show up on scans are still real—and can deeply affect quality of life.
EDS and HSD require a different lens. With the right tools and clinical insight, what’s invisible on standard imaging can often be better understood and treated.
Want more tips?
Subscribe to Dr. Gould’s Neurenity Notes Newsletter—a free, supportive newsletter filled with ideas and strategies for navigating life with EDS/HSD, delivered to your inbox on a regular basis.
Disclaimer: This blog post is for informational purposes only and shall not be construed as behavioral health or medical advice. It is not intended or implied to supplement or replace treatment, advice, and/or diagnosis from your own qualified healthcare provider.