OT - Mal de Debarquement (MdDS) - Nancy B. medical condition

I'm sending this message to all of you in hopes that you will read it. You may be
aware of someone with this syndrome and not realize it. I will say right now that
African Violets are major, major therapy for me!

For the past 2+ years I have had a little-known syndrome called Mal de Debarquement
(MdDS). My balance is poor - I stumble around on a bad day, I have hand-eye coord-
ination problems (I no longer quilt), sometimes I have difficulty with my speech, etc. MdDS
is a hidden disability - internally, I rock as if I am on a ship 24/7. My brain does not want
to accept the fact that I am on solid ground! This syndrome developed after a trip to Machu
Picchu and the Galapagoes. Many people have had it develop after a cruise or an airplane
ride.

Before anyone comes up with remedies, I just want to let you know that I and three others
in Madison are seeing a physician who knows what we have. Unfortunately, it is untreatable
at this time but we have been "guinea pigs" in several studies.

I am posting this message here because for the first time MdDS is going to have national
coverage on TV. Medical Mysteries will be broadcast on ABC at 9 pm Wed.,Jan 24th CST,
10 pm Eastern time. I have no idea what time it will be braodcast on the west coast. Two
women from Boston were interviewed, one of whom I have been corresponding with for a
long time. Only 9 min. of their interview is going to be aired so I can't tell you if the program
is going to be good, bad, or indifferent.

If you know of someone who might have this syndrome, please tell them about the show. There
are so many in the medical field who have never heard of MdDS or think it is just an inner ear
problem. If you have any questions, please take the time to D-mail me privately. Thanks for
taking the time to read this!

Nancy B

Nancy, thank you for the info. I hope you find the help you need to feel better! : )

This message was edited Jan 20, 2007 8:11 PM

Allison -
How could I possibly mind sharing the thread? I think you should actually post one separately.! I hope a lot of people will watch the program. I am sure it will be great. I for one cannot watch it - not because I won't be here but because my sister-in-law had ALS and this hits too close to home.
Nancy B

Nancy,

So sorry to hear that you have this horrible syndrome. I've never heard of it before and I can't even imagine how disruptive it must be to your life. I'm so glad that you have your violets and I will watch the ABC show on Wednesday to learn more about it. I pray that a physician discovers a treatment/cure soon.

Allison,

You are in my prayers as always. With so many dedicated researchers, I'm praying that a cure is found soon.

Stephanie

Nancy & Allison: I will keep you both in my thoughts and prayers, always!

Some of us complain, get depressed at a grey, dreary day, or "just because" something in life isn't going like we plan! We don't stop and think how VERY blessed we are when we have good health. I have to give myself a "talking to" (as I like to say), every so often and thank God that I am in good health. Others are not so fortunate. I am so thankful every day for my life. We have been given so much beauty in our flowers and trees, and all kinds of plants to enjoy!

I will again say that I am so thankful to "Dave" for planting his garden here on the worldwide web! There are so many kind, generous and really wonderful people here in the garden! I enjoy the chat, information and photo's that everyone posts!


Lin

edited to say: I will be watching BOTH of those programs!



This message was edited Jan 20, 2007 5:04 PM

I understnad Nancy I posted it in Prayer section and in Genral talk before I even read you wanted me to remove it.
I understand ALS beging close to home as it is no longer rare :((. It's close to my home to I lived with it for years.
Your in my prayers Nancy God Bless you.

Nancy, thanks for posting the info about that broadcast, and thanks for sharing with us what you're dealing with... I know you've mentioned a "balance disorder," and I wondered but didn't want to pry. :-) I'm glad you have a good physician who is staying on top of current research and treatment!

I was dianosed with "acute bilateral viral labyrinthitis" (eg, inner ear inflammation) back in college, so I can relate to some of the frustrations, including having an "invisible" disorder ("but you look fine! maybe you're just stressed?"). I'd jokingly tell people that I was now a medically certified dizzy blonde! But as you know, balance etc. isn't just about your inner ear, it's about processing information from your inner ear (and from other inputs such as visual cues) on a bunch of different levels... so balance disorders can be pretty tricky to figure out.

Allison, I'm glad you posted also -- and I'm glad you put the information on a thread of its own, as I hope both threads will be widely read. As more people know about disorders like this, diagnosis will become easier... as you said, people may recognize symptoms in themselves or in others, and with wider recognition comes (generally) an increase in research money etc.