Finally Finding Diagnosis: Mal De Debarquement

Julie Anding can recall the exact moment of onset of her mal de debarquement (MdDS) symptoms. It was December 27th of 2017. She was in Utah on vacation for Christmas. She was riding an elevator and as soon as she got off she felt dizzy. She described it as if she were riding a boat.

She was later diagnosed with mal de debarquement. It is a French word that describes illness after exiting a vehicle. It is a neurological disease which causes people to feel sustained motion when they stop moving such as when they get off a plane, a boat, or other moving vehicle. 

Julie’s Story

After the onset of Julie’s symptoms, they  just progressively got worse. When she went back to work she describes their severity as increasing from 3-5 to an 8-10. Not only were they more severe, but they were constant.

Julie faced fatigue, falls, loss of concentration, and difficulty speaking. The only time the rocking motion went away was when she was running, doing yoga, or driving her car. This is a common occurrence for those with MdDS; symptoms are minimized when the individual is in motion.

Julie contacted a neurologist who completely dismissed her.

But, she kept doing research. She knew that something was not right. Her boss also affirmed that something had changed.

Through this research she came across MdDS. She reached out to a specialist and eventually received her diagnosis after ruling out other potential conditions and conducting an MRI. Her official diagnosis date was February 14, 2018.

However, as great as it was to have an answer, comprehending the complexities of this condition and coming to accept it were very different things.

Treatment

As of now, MdDS does not have a cure. Patients can manage symptoms by avoiding known triggers. While some medications can also provide relief, many also have addictive qualities which can be dangerous.

Julie manages her own condition by staying well hydrated, taking magnesium and moringa, physical therapy, watching her diet, exercising, and managing her stress.

She’s always been very active and staying active after her diagnosis has helped her tremendously. She was working as a fitness coordinator when she was diagnosed and throughout her life she’s practiced yoga, cheerleading, track, and swimming.

She is now a well-being coach, helping others figure out how to make their health their number one priority.

Julie explains that every decision she makes now revolves around her current condition and symptoms. She has had to learn how to say no, and slow down. Being forced to leave her government career was difficult but she has loved being able to give back to the community through teaching yoga and helping others.

You can read more of Julie’s story here.

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