How to Get Diagnosed With MdDS and Find Support

Updated

MdDS (Mal de Débarquement Syndrome) is a neurological disorder that leaves people feeling as if they are rocking and swaying, as though they are still on a boat. There is no single test that confirms it, and the average person sees more than 20 doctors before receiving a diagnosis. The MdDS Foundation website (mddsfoundation.org) is built to shorten that path: it explains the disorder, points to professional resources and diagnosis information, and connects patients to support, coping tips, and a global patient registry. Use it as a starting point for understanding your symptoms and preparing for medical appointments — not as a substitute for a clinician's evaluation.

What MdDS Is and Why Diagnosis Is Hard

MdDS is typically triggered by motion — cars, trains, airplanes, ships, boats, and even fast elevators. The persistent sensation of movement continues after the motion stops, which is what separates it from ordinary motion sickness.

The Foundation describes it as "the quintessential neurological disorder," a natural result of the human brain adapting to environmental motion. Because there is no obvious physical injury and the symptoms are subjective, many people are suffering from MdDS without knowing they have it — they remain undiagnosed. That gap is why the site emphasizes awareness and research funding as much as patient support.

How to Approach Getting a Diagnosis

The Foundation does not publish a step-by-step diagnostic protocol on its site, but its resources are organized around the questions a clinician will ask. A practical way to use them:

  1. Learn the symptom picture first. Read the "About & FAQ" and "Symptoms" sections so you can describe your experience in specific terms — rocking, swaying, a sense of constant motion — rather than vague dizziness.
  2. Review the diagnosis information. The "How to Diagnose" page under Professional Resources is written for clinicians, but reading it helps you understand what a doctor is looking for and what distinguishes MdDS from other balance disorders.
  3. Bring the severity scale to your appointment. The Foundation offers a visual aid that lets you show others your symptom severity on a scale from 0 to 10 ("Know Your Numbers"). A number is easier for a doctor to track over time than a description, and it gives you a concrete way to report change between visits.
  4. Expect multiple consultations. Given the 20+ doctor average, treat early appointments as a process of ruling out other conditions rather than expecting an immediate answer.

If you are a clinician or researcher, the same site collects professional resources and the latest research in one place.

Support and Coping Resources on the Site

Once you have a name for what you are experiencing, the Foundation's patient-facing sections cover the practical side of living with it:

  • Living with MdDS and Coping Tips — day-to-day management strategies.
  • Find Support — ways to connect with others who have the condition.
  • Faces of MdDS — first-person accounts, including "Finding My Footing: How I Regained Control After an MdDS Diagnosis," in which Dakota describes what helped him most, and a poem by Debbie Whitmer, who has lived with MdDS for eight years, written to build empathy and understanding.
  • Explainer video — a short overview for sharing with family, friends, or employers who may not understand the condition.

These stories are personal experience, not clinical guidance, but they are useful for two things: recognizing that your symptoms are not unique, and finding language to explain them to people around you.

Contributing to Research: The Patient Registry

The Foundation runs a global patient registry designed to answer important questions about the natural history of MdDS — how it starts, how it changes, and what happens over time. If you have been diagnosed, joining the registry is one of the few concrete actions available to you that can help move research forward, since the scale of the problem is not matched by research dollars.

The Foundation has also partnered with the American Brain Foundation to offer the Next Generation Research Grant (NGRG) in MdDS — a two-year, $150,000 award supporting early-career researchers studying disease mechanisms or developing treatments.

What the Site Cannot Do

The website provides information, resources, and community — it does not diagnose, treat, or prescribe. Diagnosis still depends on a qualified clinician evaluating your history and ruling out other causes. Use the site to prepare for that evaluation, to track your symptoms in a form a doctor can use, and to find people who understand what you are going through.