I think they have discused this in Neurology forum. It would be great to have a little more information about this disease. It sounds rough. Some others may benefit by it.
Jazzy-our daughter was soo misdiagnosed starting at the age of 8 with everything from Annorexia to Encephalitis to Meningitis to I don't know. She had 3 episodes of this strange disease-Devics- exacerbated when she was 17 and pregnant. I could rattle off the list of when and what symptoms would occur starting with pain,sensitivity to everything,vomiting,white blood cell count off the charts,optic neuropathy( which by the way is the key to Devics) paralysis,loss of bladder control,exhaustion and seizures.It took hundreds of doctors to finally find one when she was in the hospital and pregnant to find out she had Devics Disease. She has been in remission for 15 years and was never on any medication even in the hospitals. So there is hope! And actually it was my brother in law who first diagnosed her at age 8 as he is an eye surgeon and did a visual field and gave us the bad news---BUT no doctor would agree with him until a wonderful neurologist(who at first told me she was faking it and apologized to me for that) discovered it was actually Devics.
Hi jazzy,
You may want to click on the "contact us" link below and make your suggestion to MedHelp or post it in the MedHelp suggestions forum:
http://www.medhelp.org/forums/show/110?personal_page_id=1064
I've actually never heard of devics before !