tag:blogger.com,1999:blog-6833607.post114271028461379134..comments2023-06-14T03:36:55.988-07:00Comments on Head Nurse: Good news, bad news.Johttp://www.blogger.com/profile/16520599099436383317noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-6833607.post-1159964344327778702006-10-04T05:19:00.000-07:002006-10-04T05:19:00.000-07:00hi there i am gayle and i run the worldwide devic'...hi there i am gayle and i run the worldwide devic's support website we work in conjunction with the walton centre for neurological research, and have just applied to become a charity the first ever for devic's/neuromyelitis optica, we have forums, penpals and all the latest info on research and news about nmo/devic's, we have support networks in the uk, australia, the netherlands and are currently setting one up in the usa, we also have the first ever survey of people affected by this condition and have collected over 150 names so far , we are just about to launch the first ever worldwide devic's chatroom and fighting this condition and offering support for patients, their carers and families is our life. you can find us at<BR/> www.devic.org.ukAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-6833607.post-1146696857833544612006-05-03T15:54:00.000-07:002006-05-03T15:54:00.000-07:00My partner was dx'd with Devic's in March of 05. I...My partner was dx'd with Devic's in March of 05. I took him to the ER with flu like symptoms.They said menangitis and admitted him. 5 days later he was blind in both eyes. 3 days later paralyzed from the neck down. Steroids did not work, plasma exchange did not work. Its May of 06 and he is sitting in a chair watching "The Golden Girls" on TV. He can't see color yet, but he can walk unaided for almost 1/4 of a mile. So there is hope. The Doctor told me, at one time, that he would not make it a month. Then it was he will never walk again, then he will be blind. WRONG! I geuss that's why its still called the "Practice" of medicine. Its nice to hear how kind you were to your patient though. I can't tell you how horrible some of the nurses and doctors were to us. I have even started a Devic's online support group and would love for you to check it out.<BR/>http://groups.google.com/group/Devics-support<BR/>We have over 50 members from different countries.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6833607.post-1142717718622505672006-03-18T13:35:00.000-08:002006-03-18T13:35:00.000-08:00I'm really sorry.I'm really, really sorry.I'm really sorry.<BR/><BR/>I'm really, really sorry.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6833607.post-1142781092495649722006-03-19T07:11:00.000-08:002006-03-19T07:11:00.000-08:00I actually said just last week that this job would...I actually said just last week that this job would be a lot easier if I could stop falling in love with the little old ladies I take care of...Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6833607.post-1142888860310627912006-03-20T13:07:00.000-08:002006-03-20T13:07:00.000-08:00Devics sounds a lot like what my friend with MS ha...Devics sounds a lot like what my friend with MS has; it has badly affected her eyes. It wouldn't surprise me if that is her true diagnosis but is lying to me about it. :-( Does it progress faster than MS? I know she has some bladder control issues but she walks a lot. Hmm.Jillhttps://www.blogger.com/profile/11038611297147439620noreply@blogger.com