qannie47 Posted October 6, 2013 Report Share Posted October 6, 2013 http://archneur.jamanetwork.com/article.aspx?articleid=1714848 Link to comment Share on other sites More sharing options...
qannie47 Posted October 6, 2013 Author Report Share Posted October 6, 2013 meant to post this link instead http://www.uphs.upenn.edu/news/News_Releases/2013/07/dalmau/ Link to comment Share on other sites More sharing options...
rowingmom Posted October 6, 2013 Report Share Posted October 6, 2013 Both links were interesting, thank you. Link to comment Share on other sites More sharing options...
4Nikki Posted October 6, 2013 Report Share Posted October 6, 2013 I feel like It pisses me off that there are so many doctors out there making diagnosis definations instead of sharing information. Only i dont have enought kowlodge about a doctprs live in this field to know what is going on. Link to comment Share on other sites More sharing options...
PowPow Posted October 6, 2013 Report Share Posted October 6, 2013 What do you mean? Link to comment Share on other sites More sharing options...
EAMom Posted October 7, 2013 Report Share Posted October 7, 2013 (edited) Hmmm...well what I don't understand is that (I think) they are saying only 4% of those with anti NMDAR encephalitis had psychiatric episodes. But isn't there some selection bias going on? I just wonder how many folks with mainly (or all) psychiatric symptoms are even tested for this?? So how many are missed??? It's quite possible the percentage of anti-NMDAR with pure psychiatric symptoms is much larger but these cases never get properly diagnosed/tested (since they only have psychiatric symptoms) and are locked up in the psych ward instead. Edited October 7, 2013 by EAMom T_Mom 1 Link to comment Share on other sites More sharing options...
Dedee Posted October 7, 2013 Report Share Posted October 7, 2013 Also it says it can be diagnosed by a test developed at University of Penn., but it doesn't say what that test is. Can't they let everyone in on the secret please? Link to comment Share on other sites More sharing options...
qannie47 Posted October 7, 2013 Author Report Share Posted October 7, 2013 I agree, this 4% even if it is that low is still 4% and that includes real people, real children whom are suffering. I can't tell you how many times I have fit into the 2% category....my point being, percentages should never figure into the equation when it comes to the decision of To test or not to test. EAMom, I agree whole heartedly with what you said. How many undiagnosed cases could there be out there? Another article hypothesized, about the many people sitting in psychiatric facilities that could have this disorder. As far as I am concerned, it could be .01%, if the symptoms have a possible fit, test. T_Anna 1 Link to comment Share on other sites More sharing options...
3bmom Posted October 9, 2013 Report Share Posted October 9, 2013 That is the Dr. That helped the woman who wrote "Brain on Fire". The article mentions ovarian cysts as a cause in some females. Today I read an article where they found mycoplasma pneumonia in an ovarian cyst. This article talked about mycoplasma pneumonia being a cause of child encephalitis and that 20% or more children are asymptomatic. We had the mycoplasma and HSV -6 along with strep. This info has been around for awhile. Blood tests would be a lot cheaper than a hospital stay.... Why don't they test. Link to comment Share on other sites More sharing options...
qannie47 Posted October 9, 2013 Author Report Share Posted October 9, 2013 What I find Ironic is that I just read about this for the first time when I decided to post the link....and the very neurologist that my ds's peds doc called for a consult actually has done research on this very same disorder. So, It will indeed be very interesting to see what direction he goes in with my son. He already stated to our peds doc that he thinks that this is autoimmune based..... T_Mom 1 Link to comment Share on other sites More sharing options...
rowingmom Posted October 10, 2013 Report Share Posted October 10, 2013 What I find Ironic is that I just read about this for the first time when I decided to post the link....and the very neurologist that my ds's peds doc called for a consult actually has done research on this very same disorder. So, It will indeed be very interesting to see what direction he goes in with my son. He already stated to our peds doc that he thinks that this is autoimmune based..... It sounds like your son is in good hands. Wishing you the best. Link to comment Share on other sites More sharing options...
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