Hi, I’m Jim Hunter, 45 from Belfast. I have been suffering from MdDS since I was a child. It has got gradually worse as I got older. When I step out of an elevator I feel I am bouncing up and down inside for days after. It is very erratic especially when trying to sleep. If I step onto something wobbly, I will feel it for sometime afterwards.
Travelling on buses and in cars affects me, too. I feel like I am on a boat wobbling about inside my body.
Most people including doctors have never heard of MdDS.
Nothing seems to alleviate the bouncing. The more the wobble or movement of something, the worse and longer duration of the bouncing inside me is.
I feel like my whole body is bouncing about erratically like a
pinball machine.
It affects which jobs I can do; it also prevents me from living a full normal life.
Even trying to enjoy sex is affected.
Man has been to the moon and back, technology has come on leaps and bounds, but there’s no sign of a cure for MdDS.
MdDS is invisible to everyone, it can’t be seen or noticed by others. But I hope other sufferers of MdDS read this and know they’re not alone.
All the best everyone,
Jim
A Message From the MdDS Foundation
According to EURORDIS, the voice of rare disease patients in Europe, a disease or disorder is defined as rare in Europe when it affects less than 1 in 2000. One rare disease may affect only a handful of patients in the EU, and another touch as many as 245,000. There are more than 6000 rare diseases. On the whole, rare diseases may affect 30 million European Union citizens.
I shared my story, believe in yourself, be gentle on your body, you can tell people it’s a complicated vertigo.
Thank you.
I went on a two week cruise, got MdDS 6 years ago. I tell people that the world has stopped moving however anything that scrolls makes me go into an episode of the world feeling in an altered state. I get full body aches and feel sick to my stomach. Because the world isn’t “rocking” some experts or other suffers will say I don’t have MDds. I do, it’s just changing. As time goes on the episodes are less frequent, not as long. I allow myself to go to a quiet place sooner to calm my body down. Here in new Hampshire my doctor stated it has a three year bell curve. It took me 4+, and I feel it will be lifetime. I worked hard to get a ax lot back on line
Mary, may we have the name and address of your doctor so that we may update her/his knowledge of MdDS? Please send it to connect@mddsfoundation.org. Thank you.