My name is LeeAnne and I have had MdDS for 5 years. After my third cruise, an 8-day cruise with rough seas, I noticed a change in my eye sight and had trouble reading the menus. And when I debarked I never got my land legs back. I saw my family doctor and explained my symptoms to him and he referred me to two neurologists; one said it was an ongoing migraine and the other said vertigo. Neither could explain the clearing of symptoms when driving. Both prescribed strong meds that just made me feel awful! >Luckily, my chiropractor was taking a chiropractic neurology course with Dr. Groves, in association with Dr. Carrick. When I explained to my chiropractor my symptoms he told me right away what it was.
Canada doesn’t seem to understand functional neurology or any sort of dizziness that isn’t vertigo, so I sought treatment from Dr. Groves in the US. Although some of the brain exercises, which involved some body movement as well as eye movement, minimized symptoms for a while, stress and my daily routine would change the effectiveness.
MdDS Changed My Life
This disease has radically altered my life, I was unable to read for approximately four months, the ringing in my ears was deafening, and I couldn’t focus or retain information; and the rocking, bobbing and swaying made me feel self-conscious as people may think I was drunk. My lack of balance made my job as a construction safety officer/office manager impossible as I am a safety hazard! There have been periods of severe depression and severe symptoms, and others when I rely on muscle memory to get me through the day.
Simple tasks like folding laundry or small motor skill movements or repetitive motions seem to be my triggers, as well as vibrations. I have been unable to exercise other than walking and now have developed astigmatism in both eyes. It seems to be unclear if this is associative to MdDS.
It is imperative that sufferers have a good support system and some hope. My family doctor is very open minded to ideas I bring in. My husband, Darrel, is my biggest supporter. He’s always there for me when I get down, doing research for me and keeping a positive attitude.
Hope for an MdDS cure and hope for a future!
Five years later I still have ringing in my ears, eye strain where working on a computer can be debilitating for days, and stress and muscle tightness from trying to stop the motion has given me neck and back issues. I have learned that sometimes you just need give it a rest. The stress and frustration of trying to find a voice or a willing ear can be overwhelming. Sometimes you just have to say, “Today I’m just happy to be alive and to enjoy the people and things around you.”
Today I am thankful for the opportunity to share my story. Raising awareness and research in the medical field as well as sufferers is so important!
Thank you,
LeeAnne Nagel
A Message From the Foundation
Sharing stories strengthens our camaraderie by removing some of the isolation we feel as sufferers of a rare disorder. There is still time to #ShareYourRare and tell your story. Send it along with a photo to connect@mddsfoundation.org. Include the hashtag #ShareYourRare so we know right away that you want to share your story with the public to raise awareness of MdDS, on Rare Disease Day 2/28/2018 and beyond. The more that are aware, the more interest we may raise for funding and research for our cure. #ShareYourRare Be#InvisibleNoMore
LeeAnne, I took a cruise in 2012 and the same thing happened to me. I felt I was still on the boat. The rocking sensation stayed with me for months, and seemed to be worst when I worked in my t-shirt shop where I stood still while my t-shirt press rotates. None of the rest of the family had sea legs for more than a day or two, so no one understood my plight. Thankfully I did find info on MdDS online, and was relieved that I wasn’t the only one in the world experiencing this. The good news is that many months, maybe a year later, the sensations gradually subsided. I flew to Salt Lake City three years later and the sensation returned! I was kind of freaked out, but it did eventually go away again. Now on rare occasions, especially when i work in the t-shirt shop, I will feel it, but thankfully it’s only on occasion. I now work for an organization which trains service dogs for mobility, hearing, and psychiatric conditions. One of our trainers may be working with a client with MdDS. I am interested to hear if the symptoms will be helped with a service dog. At least the dog can help steady the individual and retrieve things for her. It should also be able to help with the anxiety brought on by the condition.
Can you recommend someone in Edmonton, AB Canada that I can see for a positive diagnosis and treatment Please!!
Lee Anne I understand some of your issues, it helps to know you are not crazy. I’ve had Mdds for 15 years. Tried lots of things but it won’t go away. My best time is doing water aerobics, because the water supports you so you have better balance. It’s the only place my muscles can relax. And I can move with freedom, of course when you get out you notice the bounce all over again. Still a little relief is precious. Hang on and find what helps you.
HI LeeAnne, there is a chiropractic neurologist in Edmonton, AB if that is closer to you. He has many hours of training with Dr Carrick.
Lee Anne, hello and thank you for your post! I have been rocking and swaying for 18 years but didn’t get diagnosed until 2001 at UCLA with Dr. Baloh. It was really hard year from 2000-2001!! But, though I have never had remission since my diagnosis what a blessing and source of not feeling alone (and a little crazy) as support groups popped up on social media and The MdDS foundation was established. Hopefully, with the new research there will be a break through and a treatment but until then stay strong.
I completely sympathize with you. I am also working with a functional neurologist but cannot report improvement quite yet. What I can’t understand and haven’t seen explained is why many experience so many other symptoms other than the rocking or unsteady sensation – eye issues, ears, headaches, neck aches, depression, etc. Is it all attributable to fighting this each and every day? Wish we had the answer. It’s just crazy that driving makes everything just fine. Best of luck to all.
GW, you may be interested in the PloS ONE article “Metabolic and functional connectivity changes in mal de debarquement syndrome.” It is one many medical research articles available in the Professional area of this website. The article discusses areas of relative hypometabolism, and both increased and decreased connectivity between areas in the brains of MdDS subjects. Research is on-going, and new articles are listed as they become available.