You will find much useful information on the website, including a collection of medical literature, patient stories, as well as a listing of labs that test, in US, Canada and Europe.
Many doctors still don’t know, or think they know. Unless the patient presents with the classic presentation of flu-like prodrome, psychiatric symptoms, hyperkinetic phase and then commatose or complete coma, which happens over a period of days or weeks, others who have predominantly psychiatric presentation may not get the testing they need.
What we need are curious and interested physicians and ones like your daughter’s GP who are open to learning new things.
@GetItRight, Firstly, thank you for the good wishes. Today in fact my daughter started college; a chapter in her life which I was not sure we would see. To answer your question of whether this condition can “manifest itself as a lower-grade, chronic inflammation that presents the symptoms less dramatic ways?” It does indeed! In the largest study to-date of 577 cases, approx 1% of these cases manifested with predominantley psychiatric symptoms. They were lucky to have been identified and to have received life saving treatment. Who knows how many others are out there though, that are not so fortunate with unthinkable consequences.
Do I see “any value of a regimen of anti-inflammatory supplements, either prophylatically or as part of one’s maintenance protocol?” Yes, why not. A leaky blood brain barrier has been postulated by C. Hammer, et.al, in the article entitled Neuropsychiatric disease relevance of circulating anti-NMDA
receptor autoantibodies depends on blood–brain barrier integrity in Molecular Psychiatry advance online publication, 3 September 2013; doi:10.1038/mp.2013.110, in case you are interested in reading it.
Thank you for your interest and for asking so many pertinent questions.
I agree Rossa. I hope that further studies of anti-NMDA and related forms of autoimmune encephalitis will provide a crucial key to understaning schizophrenia.
@dave_cm thanks for providing the link to this terrific article in the Atlantic. There are cases of autoimmune encephalitis for which an antibody has yet to be identified, such as the one described in the article. New antibodies ccontinue to be identified, however anti-NMDA is the most commonly identified one. A statistic which I neglected to include is that approximately 40% of cases are pediatric.
Thanks GetItRight for your comments that are spot on. I was delighted when offered the opportunity by MiA. Lives are in the balance and the knowledge is still not where it should be. We have miles to go yet before we sleep…
@ Someone Else. Thank you for your commets and for prayers for my daughter. Prayer is powerful and very reassuring. Thank you again.
Report comment
@GetItRight I can be contacted via http://www.antinmdafoundation.org at the email [email protected].
You will find much useful information on the website, including a collection of medical literature, patient stories, as well as a listing of labs that test, in US, Canada and Europe.
Many doctors still don’t know, or think they know. Unless the patient presents with the classic presentation of flu-like prodrome, psychiatric symptoms, hyperkinetic phase and then commatose or complete coma, which happens over a period of days or weeks, others who have predominantly psychiatric presentation may not get the testing they need.
What we need are curious and interested physicians and ones like your daughter’s GP who are open to learning new things.
Report comment
@GetItRight, Firstly, thank you for the good wishes. Today in fact my daughter started college; a chapter in her life which I was not sure we would see. To answer your question of whether this condition can “manifest itself as a lower-grade, chronic inflammation that presents the symptoms less dramatic ways?” It does indeed! In the largest study to-date of 577 cases, approx 1% of these cases manifested with predominantley psychiatric symptoms. They were lucky to have been identified and to have received life saving treatment. Who knows how many others are out there though, that are not so fortunate with unthinkable consequences.
Do I see “any value of a regimen of anti-inflammatory supplements, either prophylatically or as part of one’s maintenance protocol?” Yes, why not. A leaky blood brain barrier has been postulated by C. Hammer, et.al, in the article entitled Neuropsychiatric disease relevance of circulating anti-NMDA
receptor autoantibodies depends on blood–brain barrier integrity in Molecular Psychiatry advance online publication, 3 September 2013; doi:10.1038/mp.2013.110, in case you are interested in reading it.
Thank you for your interest and for asking so many pertinent questions.
Report comment
I agree Rossa. I hope that further studies of anti-NMDA and related forms of autoimmune encephalitis will provide a crucial key to understaning schizophrenia.
Report comment
bcharris, I hope to see the day where all first episodes of psychosis will be tested.
Report comment
@dave_cm thanks for providing the link to this terrific article in the Atlantic. There are cases of autoimmune encephalitis for which an antibody has yet to be identified, such as the one described in the article. New antibodies ccontinue to be identified, however anti-NMDA is the most commonly identified one. A statistic which I neglected to include is that approximately 40% of cases are pediatric.
Report comment
Thanks GetItRight for your comments that are spot on. I was delighted when offered the opportunity by MiA. Lives are in the balance and the knowledge is still not where it should be. We have miles to go yet before we sleep…
Report comment
Thank you very much for the good wishes for my daughter Alex. She continues to do well.
Report comment