My name is Jodi Leffue, and I am a 52 year old woman from Franklin County, Virginia.
In August 2017, I attended a family vacation on a cruise. I had a wonderful time on the cruise. I noticed I could feel the ship rock but was able to still enjoy myself. On the excursions, I still had the sensation of the boat moving. Once I returned home, I still felt the rocking sensation. I went to an urgent care physician who prescribed short term valium – with no reduction in symptoms.
I went to an ENT who specializes in balance issues, and he suggested Zyrtec and another short term valium – still no reduction in symptoms. My ENT suggested I see a neurologist.
I called many neurologists in my area and around the state of Virginia. I was fortunate to find a neurologist with an understanding of MdDS close to my home. He was very helpful, knowledgeable and understanding. He explained to me the reasons I was affected with MdDS and the plan for my recovery. He referred me to a vestibular therapist who also has an understanding of MdDS and has worked with patients with MdDS. Currently, I am trying different exercises and modalities to reduce symptoms.
MdDS is very frustrating because my family, friends and coworkers don’t understand, and I look normal.
I try to explain that my brain wants my body to rock and sway. If I fight the urge to rock and sway then all my surroundings are rocking and swaying. The rocking and swaying causes a feeling of trying to maintain my balance which causes fatigue, loss of concentration, anxiety and depression.
I may look normal but every day is a struggle to complete simple tasks such as typing, showering, feeding myself and watching TV. But there is always hope. I hope one day I will return to normal and be able to travel in a car, dance, go to movies and concerts and shop without having frustration and anxiety attacks. I will never give up.
In case you missed it, this recent post is about how MdDS research has advanced. It is on-going and recruiting. https://mddsfoundation.org/2018/01/31/tacs-research-recruiting/