JULIE'S MdDS CASE HISTORY 

 When and Where

At the end of January 2005, I went on a 5-day, 4-night cruise to the Bahamas with my sister.  I felt fine on the cruise - I was running laps on the deck almost every morning and attending lots of activities.  There were a few occasions, especially in the dining room, when I felt a little nauseous, but I didn't want to take any medication.  My sister, on the other hand, was taking Dramamine almost the entire trip and stayed in for a night or two because she was feeling motion-sick.

For the first few weeks after I got back from the trip, I felt like I was still rocking a bit, but I didn't do anything about it.  I remember my sister telling me a week or two after we got back that she still felt like she was rocking, so I thought it was normal.  Also, I was dating a guy who I really liked, and was preoccupied with our blossoming relationship.  So I didn't give the rocking sensation or "off-balanceness" much thought.

Diagnosis

In early March, I went to the Philadelphia Flower Show with my family to celebrate my parents' 35th anniversary.  I felt really rocky that night and finally admitted to them (and to myself, really) that I had a problem.  My mom thought it might be diet-related because I'm a vegetarian and she's convinced that I don't get enough protein.  I didn't have a primary care physician, so I went to see the doctor with the first available appointment.

On March 16th, I saw the doctor.  After describing my symptoms to her, she suggested that I get an MRI of my brain, which I did on April 4th.  The MRI was negative.  She also took a blood sample, which showed no abnormalities, and prescribed Meclizine, which did not help.  Finally, the doctor told me she wanted to have my vision and my heart tested (she thought she heard a murmur).  I knew that the rocking sensation probably had nothing to do with my vision or my heart, so I began to lose confidence in her ability to treat me.  I never went back to her again.

In early April, I decided to see an ENT specialist because I thought the rocking sensation might be associated with an inner-ear problem.  I made an appointment with Dr. B. Davison Smith at Lankenau Hospital, who had me do some pointing and balance exercises and also ran a hearing test, which was negative.  Dr. Smith told me I had something called "maldebarkment syndrome," and that I should continue to stay active and that it would go away over time.

I started to do some research on this "maldebarkment syndrome."  When I Googled it, I only got one hit, which told me that it was a type of "motion/balance confusion."  I kept searching on the web, and finally tried the French spelling of maldebarquement.  I got a lot more hits, including the MdDS Balance Disorder Foundation website and Evan Torrie's MdDS support website.  Everything on these sites described my condition perfectly, so I slowly started to accept Dr. Smith's diagnosis, which was officially referred to as Mal de Debarquement Syndrome (MdDS).

But acceptance didn't come easily.  It took me a month and a half, many tear-filled conversations with my family, and several visits to a second ENT specialist before I finally admitted to myself that I had MdDS.  During my initial visit with the new ENT, he advised me to stop taking an anti-hive medication called Atarax because it suppresses the vestibular system.  I sometimes wonder, if I hadn't been on the Atarax during the cruise, would I have avoided getting MdDS?  He also scheduled me for an ENG (electronystagmography) on May 20th, which came back normal.  At that point, I finally became convinced that I did have MdDS, and decided to pursue treatment with an MdDS specialist.

General Comments and Next Steps

In late May, I decided to join the MdDS Support Group that was mentioned on the Balance Disorder Foundation website, and started reading everything I could find about MdDS.  I contacted MJ, one of the founders of the foundation, who lives close by in Blue Bell, PA.  She told me how she went on a cruise seven years before and was diagnosed with MdDS.  Her symptoms were severe enough to force her into early retirement, so I started to realize how lucky I was to have a fairly mild case of this - I was still managing to work, teach Sunday School, attend social events, and jog 7-10 miles per week.  Then again, I am fairly young (just turned 28) and in excellent health otherwise, so I wonder if that has helped to mitigate my symptoms?  MJ had taken many medications, but had only found relief from Klonopin and Ativan (which she was currently taking).  She recommended several doctors, including Dr. David Solomon, a neurologist who was then at the University of Pennsylvania and knowledgeable about MdDS.  I was grateful to MJ for her support and guidance.  For the first time in months, I felt hopeful that there were doctors and medications that could help me.

Right away, I called the U of P to schedule an appointment with Dr. Solomon.  Turns out, he had moved to Johns Hopkins Neurology and is now practicing with Dr. David Zee, one of the leading specialists on MdDS.  I will be seeing Dr. Solomon on June 21st and am hopeful that he will be able to help me.  In the meantime, I started seeing a new primary care physician, who is much more understanding of my situation than my first doctor was, and has prescribed Zoloft for me.  I'm not sure if the Zoloft is really helping yet since I've only been taking it for 2 ½ weeks, but I am feeling more optimistic now that I have the appointment with Dr. Solomon and the summer has finally arrived.  Maybe this is the beginning of the end?

June 21, 2005

back to Personal Stories

Informational Brochure

Links

Contact