this all wrong..but can't seem to find any info without proper spelling..my friend has deambera...trying to understand what she has gone thru and don't want her to have to go into it all over again..does anyone know what it is???i believe it deals with muscles...and know she was hospitalized for a very long time almost didn't make it..she has been having fears of it coming back..closed in her own body...her claustrphobia is way off scale..just want to help her without her reliving it all over..thanks...moonstar

hi moonstar.

could it be Guillain-Barre syndrom

if it is..here one link..there are a bunch http://www.gbsfi.com/

What are the symptoms, besides that its' a muscle disease, hon?

When I was in hospital (physical rehab sort of thing HAHAHA) I knew a person with GB - they lose control of their voluntary and involuntary muscles after an attack - it is like getting the flu and then you lose control of your muscles - generally within 24 hours. Some patients have to be on respirators etc to try and breath. With treatment there is a good prognosis of imrpoving - although it is very slow and there is a risk it can return.

Well that's what I udnerstand antways

Love Rxxxxxx

i was trying to guess by the sound of the word that was posted. epstien barre is more fatigue right?

i think i need to make google my best friend. hmmm..maybe not. i learn more from members like you!

thanks.. it sound like gb but she always refers to it i will try to spell it phoneticlly(????) if i can de-om-boray...i hate to ask her again..i have checked web md--joke you have to know the spelling of the word to get any info..
she did describe it as being alive and awake but not being able to move or communicate at all (totally parallized) they had to at one point cut a hole inside her throat and they were so rough on her that she almost was going to be unable to speak... she has poor motor coordination still and her face contorts as she does anything or nothing.her one eye droops and the same side of her mouth doesn't work well either.very self conscious.doesn't like to see people it takes alot to get her out of the house and she will only go out with me.she says i am her anchor..oh how can i be her anchor if i can't stay awake to be there when she needs me.thanks for any info you can let me in on..i just want to be able to support her and have an idea of her problems...that of course is not the only problem she has..but i have found that is the case for most of us.. thanks ...i need help to be able to help everyone (she is not the only person who comes to me with all their stresses and life crisis) i failed helping my baby david get thru his complications after surgery(ileostomy--& while in the hospital they fractured his hip and had to have a screw and plate put in) i don't think i will ever get over that nevermind if i fail somebody else who depends on me..don't know where i would be right now without you all to vent too..yes,,i do off the bridge on the way to the beach..where i scattered my mom's ashes 13 yrs ago..

Hi,

Know what? I think Curious has got it (incredibly smart of you, Curious! Can't imagine how you got there!) OK (I got it wrong first time, sorry)- Guillain Barre is french, and is pronounced, phonetically (with a hard G, like girl) gee-ayn-bah-ray... Also known (wrongly, as I found out) as Guillaume Barre, pronounced gee-ome-bah-ray. Not too far from your description.

If it is, it's a ghastly thing to have - I believe you just kind of "catch" it, not hereditary or anything. Shudders.

Moonstar, don't take on tooooo many of other people's troubles, leave some room to deal with your own...but these things are often "give and take", and I'm sure you help eachother. Just, whatever you do, stay away from that bridge, OK?

I was going to advise you to get some rest - but just read your other post!! Take care,
all the best

it's being around monkeys all day...you learn to decipher.....lol especially ones with a southern texan accent.

check out that link when you get time moonstar. i can find others for you.

rare conditions starting with D's
any of these sound right ?
I couldn't come up with anything on google using de-om-boray
DOOR Syndrome
Dandy Walker Malformation
De Barsy Syndrome
De Santis Cacchione Syndrome
Degos Disease
Dejerine Sottas Disease
Dengue Fever
Dentin Dysplasia, Coronal
Dentin Dysplasia, Type I
Dentinogenesis Imperfecta Type III
Depersonalization Disorder
Dercum Disease
Dermatitis Herpetiformis
Dermatitis, Atopic
Dermatitis, Contact
Dermatomyositis
Devic Disease
Dextrocardia with Situs Inversus
DiGeorge Syndrome
Diabetes, Insulin Dependent
Diastrophic Dysplasia
Diencephalic Syndrome
Diffuse Idiopathic Skeletal Hyperostosis
Dilatation of the Pulmonary Artery, Idiopathic
Disaccharide Intolerance I
Diverticulitis
Diverticulosis
Down Syndrome
Dracunculosis
Drash Syndrome
Duane Syndrome
Dubin Johnson Syndrome
Dubowitz Syndrome
Duodenal Atresia or Stenosis
Dupuytren's Contracture
Dyggve Melchior Clausen Syndrome
Dysautonomia, Familial
Dyschondrosteosis
Dyskeratosis Congenita
Dyslexia
Dysplasia, Epiphysealis Hemimelica
Dysplasia, Fibrous
Dysthymia
Dystonia
Dystrophy, Asphyxiating Thoracic
Dystrophy, Myotonic

or maybe it is spelled with a DI or DY ? dhy
i've tried variations with spelling but nothing yet.
If you get close to something with spelling on Google it will ask - did you mean "---- "{ other spellings, word}

could you just ask her the name and spelling of it?
or would it upset her too much?

I checked for rare conditions, rare diseases starting with D

ahh you figured it out while i was searching? ?