My name is Jodi Leffue, and I am 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.
I have had MdDs for 9 mos. Today, I finally got some relief. I went barefoot in my house. I put my shoes on and it was worse than ever. (Phyllis Newman)
Jodi, if you see this, will you please contact me? I am in Roanoke Virginia and I am 100% sure that I have MdDS and I would love to know which doctors you were referred to. My email is [redacted]. I hope you see this comment. I feel like I’m losing my mind. Thank you
Amy, the Foundation values your privacy. Our policy is to not publish email addresses or phone numbers. If you are a member of our Support Groups, there are others from Virginia. We recommend joining our MdDS Friends closed group on Facebook. Meanwhile, we will let Jodi know that you commented on her story.
I have had MdDS 18 years and though it is difficult you need to take it a day at a time. Though I have never had remission I know most of my triggers and have some control on what to avoid.
The MdDS Support group is great and so is the MdDS Facebook page.
Your story is exactly like mine. For me my symptoms got better with time and vestibular exercises. I still have it, but i can walk, bike, do yoga, and work. Effexor helps! Best to you. Its an awful malady but is somewhat manageable over time.
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