Since my newspaper article last November, I have had a crazy year with health issues with my son and husband. But I want to share some things I have been doing to raise awareness about MdDS. I created a packet that I give to professionals. It includes my newspaper article, the MdDS brochure and small paragraph about me trying to raise awareness.
I was in Charlottesville, Virginia, on several occasions with my son. I took my packet to the neurology department at the University of Virginia Hospital and University of Virginia ENT clinic.
While in Roanoke, Virginia, with my husband, I gave a packet to the chief of neurology and department secretary at the Virginia Tech Carilion Research Institute.
I also delivered a packet to the head of physical therapy at Jefferson College of Health Sciences. A few other professionals have received brochures, too: the nurses in the ER at the VA when my husband was hospitalized; his home health physical therapist who was very interested in learning about MdDS and the vestibular system; his out-patient physical therapist; and I offered to provide an in-service to the therapists.
This week, I participated in a heart walk and wore my MdDS shirt. ~Jodi L.
Find Jodi’s newspaper article, “Solid land feels like rolling ocean to Boones Mill woman with rare disorder,” through our Media page.
You can get an MdDS shirt like Jodi’s here: http://www.zazzle.com/
Send your request for brochures or quick reference MdDS cards to brochures@mddsfoundation.o
Hello. It has been 2 months since my cruise. I have self diagnosed with MdDS after multiple doctor visits. Today I tried blasting music into my earphones whilst sitting steadily and doing head, eye and neck movements. It has calmed me down but the wobbly sensation continues
Regards
Jason
Dear Ita, please check your iron levels (not only whether you have iron deficiency anemia). I have had two bouts of vertigo characterized by a cessation of dizziness only when in passive motion (such as driving a car). The first bout lasted 3 months and disappeared after I was put on iron supplements due to fatigue and an inability to recover from the flue. I never connected my recovery to the iron but thought my vertigo disappeared because I had new glasses. Seven months later the vertigo/ MDDS reappeared and this time it lasted more than one year. I saw a number of doctors, but never received a diagnosis or any effective treatment. I did notice that my vertigo would improve 1 week or so before my menstrual period and then get worse immediately after it began. This led me to believe that my vertigo was somehow hormonally influenced. I did not realize that the link was rather related to the loss of blood and thus a dip in iron levels. Recently I had the flu and found myself unable to recover again, so I decided to take some of the iron supplement pills I had left from my previous treatment (high dose and daily). Less than a week later my vertigo was completely gone. It is now 3 weeks later and the vertigo has not returned. Low iron may not be the reason you have MDDS, but I encourage you to have your iron level checked. I suffered with this debilitating condition for one year and the solution in my case was so very simple and inexpensive. I hope my experience may help you and other women and men suffering from MDDS. Best of luck.
Hi I have just come across this article. After 12 years of living with anxiety and stress because of a condition diagnosed as vertigo which I know it isn’t. I went to New York in 2007, my first long haul flight from Northern Ireland and within 3 days of my stay I began having severe symptoms of movement like my body was out of sync with my legs and a weird feeling of heaviness. I struggled for over a year with it morning, noon and night. Treated with meds for mental illness and nausea. It was hell. Gradually I got peace and normality for about 6/7 years. I still get it off and on but right now it’s almost daily but not as intense as the first time. My GP won’t give me anything as she says it isn’t vertigo but has me on anti depressant. I’m referred to ENT and want to take info to my first consult. HELP
The Foundation does not diagnose, offer medical advice, or provided one-on-one counseling. If you suspect that you have Mal de Débarquement Syndrome, you will need to consult with a doctor to develop a plan of action. You may also be interested in our online support group on Facebook, MdDS Friends. Members are from around the world, many in Europe.
I have MdDS for3 years I got some help at mount Sinai I still have bad days. Any info would help
We recommend following up with Mt. Sinai directly. Note that there have been many changes to the program and personnel. They have provided this email address for questions related to their MdDS work: balance@mssm.edu