Does MdDS have an ICD code?

Yes! It’s R42 “Dizziness and giddiness.” Before we get into a discussion on the words dizziness and giddiness, let’s be clear on the significance of having an ICD code.

What is an ICD code?

  • The International Classification of Diseases (ICD) was established by the World Health Organization (WHO) in 1949. Approximately 27 countries use ICD-10 for reimbursement and resource allocation in their health system. Most countries (117) use the system to report mortality data, a primary indicator of health status.
  • An ICD code is needed for a person’s medical records—it is important for administration, epidemiology, and research. ICD codes are not how a doctor diagnoses a patient.
  • ICD-CM (diagnoses) and ICD-PCS (procedures) codes are used by a practioner’s office when submitting for reimbursement from insurance agencies.

What does R42 mean?

R42 is the billing code for a diagnosis of “Dizziness and giddiness,” which is medical terminology recognized by clinicians. It serves as an umbrella for conditions that in lay terms may be described as constant vertigo, dysequilibrium, loss of equilibrium, non-labyrinthine vertigo, etc. Note that we recommend patients avoid using the words dizzy or vertigo when seeking an accurate MdDS diagnosis from your doctor. Instead, use descriptive language such as, “I feel like I’m rocking or bobbing,” “I feel like I’m on a boat,” or “the floor feels like a trampoline.” Describing your symptoms is rather than offering a self-diagnosis of vertigo will go a long way toward averting misdiagnosis.

What does having R42 mean?

Having an ICD code means a condition is recognized by WHO. Given this validation, and a billing code to use, certain physicians may be persuaded to recognize and treat MdDS as a legitimate condition. Your doctor will find Mal de Débarquement indexed under Syndrome in the ICD-10-CM.

Can we change it from “Dizziness and giddiness”?

The “10” in ICD-10-CM indicates the code book is in its tenth revision. Little used codes are deleted when the book is revised annually. Thanks to volunteers who worked with a Centers for Disease Control (CDC) liaison, MdDS is just one the 500 rare diseases/disorders that have a code. This means there are over 6,500 known rare diseases/disorders without a code! We hope each of them has an advocacy group like the MdDS Foundation and volunteers who will put in the hours, championing their cause.

There is more biomedical literature available today than in 2003 when we began the year-long process to get a code. But still without specific tests to diagnose MdDS or symptoms, signs and abnormal clinical and laboratory findings, it is nearly impossible to be reclassified in the ICD code book. Acceptance under Dizziness and giddiness is actually to our benefit. We can take advantage of the existing, recognized code to reduce the number of doubting doctors and increase the likelihood for research. But we can’t do this without your help. In observance of International Volunteer Day (December 5, 2020) will you please write to us and volunteer? Whether your forte is fundraising or the gift of gab, tell us how you can help. We’re looking forward to working together.


Discussion Policy
  1. Hubert Chang

    This is great news and a huge leap forward to helping people are afflicted by MdDS. Thank you for sharing this information!

  2. Kathleen Martens

    I’ve had MdDS for 12 years. I believe I got it on a combination of air flights and a cruise to Hawaii on our 50th wedding anniversary. When I discovered the MdDS Foundation about 6 yrs ago, the information and the stories of others made a lot of sense. The symptoms and experience and response from doctors were similar to what I have been struggling with.

    I’ve seen numerous doctors and specialists and have had many test, MRI’s, brain scans, etc. but have not ever been given definitive answers. Some doctors have made suggestions about diet, some have given prescriptions, but nothing has been helpful. It would be helpful to have more research and study and that there would be more knowledge about the condition and more information about modes of treatment, etc. Many times I have felt that my husband and I knew more than the doctors. It was reassuring that MdDS is recognized by the World Health Organization as a medical condition and is given an ICD code. Thank you for the information.

    1. MdDS Foundation

      You’re welcome, Kathleen. If you aren’t already a member, you may be interested in our online support group on Facebook, MdDS Friends. Members of all ages are from over 60 countries and have a wide variety of experiences and stories to share. The group is welcoming and very supportive.

  3. Diana Grubbs

    Does this code help get treatment? Help get insurance coverage? Or limit coverage?

    1. MdDS Foundation

      ICD codes are used by healthcare practices for reimbursement purposes. That is their purpose. Only in an indirect way, may having a code help a patient get treatment. Finding a code may influence reluctant healthcare providers to provide care. Since many #MdDSwarriors suffer misdiagnosed or undiagnosed, it is important to make sure medical professionals know that MdDS does indeed have an ICD code.

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