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.
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.
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!
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 firstname.lastname@example.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