Hopefully this becomes part of routine screening in treatment resistance psychosis, because people with this disease could and likely have end up homeless babbling to voices in their brain.
I am experiencing brain burn., throwing uo, muscle weakness, no sleep at all,sometimes I can't talk, I mix up my words, and pain throughout body. Currently Neurologist has me on Acyclovir introvenious and Antibiotics introveniously. He doesnt know how to treat. I need a Neurologist that knows more about how to treat. Any ideas in the USA
I know someone with everyday brain on fire sensation.. he feels tired (no energy), "tickling" on the spine, has ibs and sometimes he has weird heart palpitations. We've been looking for all these symptoms.. he went to the doctor..nobody knows what he has. What is it? Maybe you could tell?
I was diagnosed with both Anti-NMDA-RE and Neuromyelitis Optica. I did end up on a rapid downward spiral and on life support. It took a year of physical, occupational and speech therapy to gain some type of normalcy. I lived in an old folks home for a few months then graduated to a rehabilitation hospital. Part of my treatment plan is Rituximab infusions every 24 weeks for the rest of my life. What are your thoughts or experience in this type of treatment?
Thank you for sharing your experience . Immunomodulatory treatments are evidence based treatments for this condition e.g rituximab . What signs and symptoms did you have and how did you get your diagnosis. If you could share your experience. Thanks
Thank you for the response. About two years ago I had a very persistent cough and dizziness for a couple of weeks. The cough was bad enough I went to see my Primary Care Physician. She prescribed me Tesslon Pearls (spelling??). They didn't help and when I went for a follow up, I explained I had a drunken feeling that wouldn't go away. As the days went on, I started to become very impulsive and definitely not myself. I started to hear music and sounds that nobody else could hear and developed a fever. I went to the emergency room a few times and was turned away only to be referred back to my Primary Physician. I kept insisting to my mom and physician that something was wrong with me. Side note...my mom had just moved in with me so by the grace of God she was able to see all of this transpire and take care of my kids. My physician ordered thyroid testing which were all normal. Finally, the symptoms got bad enough my mom took me back to the ER (as I could no longer do things on my own). She insisted they admit me because of my worsening condition. They ran many tests...all normal. So they decided to admit me to the psychiatry ward where I stayed for a week. My mom ended up staying with me because the staff would leave me alone for long periods. I stopped eating, rambled, became incoherent, had conversations with nobody, seizures and lost movement. I had to be put into diapers. My breathing got so bad that every breath was a gasp. My mom pushed with the psychiatry team to have a physician evaluate me. Upon evaluation, I was put on a breathing tube. A neurologist evaluated me and said I was a psychiatry case...probably having a nervous break down. My mom continued probing with the doctors until they finally told her that she could have me evaluated elsewhere. I was flown from Montana to the University of Washington on life support. They were really on it. They ran every test and scan. I eventually moved to a tracheotomy. They discovered a 9cm terratoma (spelling?) On my overies...they completely removed both ovaries. I was started on chemo and Rituximab. I underwent plasmapheresis 5 time. It took a while to wake up. The seizures continued and I moved around a lot. It looked like I was in lala land and wouldn't respond. Once I started to come around, it took a while to talk again. My entire body was paralyzed. A Veteran's organization even donated a motorized wheelchair that I could control with my mouth. I had to learn to talk, feed myself, care for myself, write...all the basics. I had to learn to stand and walk again which took a while. I lived in a senior facility for a while and moved to a intensive rehab facility. I truly wish I went to the rehab facility first...that is where I made the most progress. I graduated from a ceiling lift to a slider board, then incorporated a walker...eventually to a cane and then just my AFO. I still do my own progress checks and stuff at home. I do have drop foot on the left side. I was on a lot of medications...A LOT. Anti-seizure meds, mood altering meds, klonopin, adivan but I absolutely hated the way they made me feel. I was able to work with my neurologist and physician to get off of them quickly. Now I just get my rituximab infusions every 24 weeks. I am due for my next scans at the end of this month...which they haven't done since I got out of the hospital so I am very excited to see what we will see in them! I know that is a lot...but I am happy to elaborate or answer more questions.
And fortunately...my family has quite a few videos of the entire experience from beginning to now. Interviews with doctors, the different phases of the on set...I have photos of my face and my eyes drifting in the beginning.
@@ashleythompson6573 Thank you for describing this in detail. There a number of red flags related to Anti NMDA IN THERE. The movie brain on fire 🔥 and the book by Susannah Cahalan covers this - very similar to your description. I'm glad that they finally picked it up and things are better. Wish you well.
We've covered the association between cannabis and schizophrenia in more detail in this article psychscenehub.com/psychinsights/psychopharmacology-cannabis-and-mental-health/
Discussed here. It is an autoimmune condition. In some cases associated with ovarian teratoma or other tumours. But often a viral infection triggers precedes the condition which is likely due to viral induced autoimmunity. psychscenehub.com/psychinsights/anti-nmda-receptor-encephalitis-a-synopsis/
Hello sir, how you doing ? I have weak memory so visited doctor for same and he prescribed me memantine 5mg. I am aged 32. I can take it safely? Somewhere memantine could lead to this disease? Could you please recommend any memory enhancing medicine ? Thanks air
No memantine cannot lead to this disease. Memantine improves memory functioning through NMDA antagonism. With memory issues always rule out medical aspects, Vit B 12, folate, Iron, Vit D deficiency , thyroid functions and other blood tests. Evaluation for ADHD can also be carried out. We have done a video on this. PS not medical advice
Tests should always be combined with the clinical picture. There are many other reasons why a white cell count increases. One of the most common reasons can be an infection.
@@PsychiatrySimplified yes ruled out infection, urinanalysis negative , chest abdo exam clear. Is it common finding in psychosis for WBC to be very high in range of 20...??? High wbc Was treated with antibiotics
@@PsychiatrySimplified yes only if doctors are thinking of teratoma. Not many medical reg or psych reg will think oh lets examine testis of a psychotic patient. I know high wbc is not related to testicular teratoma. But have you found high wbc of no known origin in psychosis is that a common finding? Btw thanks a lot for this channel its highly educative and you explain all so very beautifuly. I like you how in your busy schedule you are able to teach and make videos. Kudos to you .
Merdar Lucian-Pavel literature suggests that around 40 percent of anti nmda encephalitis cases are documented in children - case has been documented in 21 month toddler. The mean age is 25 but SD 14.8 so younger cases are present in kids psychscenehub.com/psychinsights/anti-nmda-receptor-encephalitis-a-synopsis/
@@PsychiatrySimplified thank you for the video and article, not to many info around it. My son is doing seizures and having similar symptoms as in brain on fire movie for an long time, all tests came back negative. Now we wait for Anti-NMDA tests, because of that movie.
@@PsychiatrySimplified thank you so much for the info, added your video and links to my post on our own journey dany.fyi/updates/brain-on-fire-or-anti-nmda-receptor-encephalitis/
Miguel R higher incidence in females 4:1 in males may be associated with testicular tumours psychscenehub.com/psychinsights/anti-nmda-receptor-encephalitis-a-synopsis/
Miguel R this specialised testing can be ordered by psychiatrists/ neurologists etc. Please speak to your doctor and they should be able to organise this.
Hopefully this becomes part of routine screening in treatment resistance psychosis, because people with this disease could and likely have end up homeless babbling to voices in their brain.
This video gaves me anxiety and now I believe I have this :/
I am experiencing brain burn., throwing uo, muscle weakness, no sleep at all,sometimes I can't talk, I mix up my words, and pain throughout body. Currently Neurologist has me on Acyclovir introvenious and Antibiotics introveniously. He doesnt know how to treat. I need a Neurologist that knows more about how to treat. Any ideas in the USA
Thank you! Very informative!
I know someone with everyday brain on fire sensation.. he feels tired (no energy), "tickling" on the spine, has ibs and sometimes he has weird heart palpitations. We've been looking for all these symptoms.. he went to the doctor..nobody knows what he has. What is it? Maybe you could tell?
It's difficult to speculate without a clinical history and exam. Hope he gets help.
Great!!
Very interesting.
Where would sudden onset aggressive behavior fall in the list of symptoms?
L Williams in the neuropsychiatric phase - as part of agitation
L Williams psychscenehub.com/psychinsights/anti-nmda-receptor-encephalitis-a-synopsis/
I was diagnosed with both Anti-NMDA-RE and Neuromyelitis Optica. I did end up on a rapid downward spiral and on life support. It took a year of physical, occupational and speech therapy to gain some type of normalcy. I lived in an old folks home for a few months then graduated to a rehabilitation hospital. Part of my treatment plan is Rituximab infusions every 24 weeks for the rest of my life. What are your thoughts or experience in this type of treatment?
Thank you for sharing your experience . Immunomodulatory treatments are evidence based treatments for this condition e.g rituximab . What signs and symptoms did you have and how did you get your diagnosis. If you could share your experience. Thanks
Thank you for the response.
About two years ago I had a very persistent cough and dizziness for a couple of weeks. The cough was bad enough I went to see my Primary Care Physician. She prescribed me Tesslon Pearls (spelling??). They didn't help and when I went for a follow up, I explained I had a drunken feeling that wouldn't go away. As the days went on, I started to become very impulsive and definitely not myself. I started to hear music and sounds that nobody else could hear and developed a fever. I went to the emergency room a few times and was turned away only to be referred back to my Primary Physician. I kept insisting to my mom and physician that something was wrong with me. Side note...my mom had just moved in with me so by the grace of God she was able to see all of this transpire and take care of my kids. My physician ordered thyroid testing which were all normal. Finally, the symptoms got bad enough my mom took me back to the ER (as I could no longer do things on my own). She insisted they admit me because of my worsening condition. They ran many tests...all normal. So they decided to admit me to the psychiatry ward where I stayed for a week. My mom ended up staying with me because the staff would leave me alone for long periods. I stopped eating, rambled, became incoherent, had conversations with nobody, seizures and lost movement. I had to be put into diapers. My breathing got so bad that every breath was a gasp. My mom pushed with the psychiatry team to have a physician evaluate me. Upon evaluation, I was put on a breathing tube. A neurologist evaluated me and said I was a psychiatry case...probably having a nervous break down. My mom continued probing with the doctors until they finally told her that she could have me evaluated elsewhere. I was flown from Montana to the University of Washington on life support. They were really on it. They ran every test and scan. I eventually moved to a tracheotomy. They discovered a 9cm terratoma (spelling?) On my overies...they completely removed both ovaries. I was started on chemo and Rituximab. I underwent plasmapheresis 5 time. It took a while to wake up. The seizures continued and I moved around a lot. It looked like I was in lala land and wouldn't respond. Once I started to come around, it took a while to talk again. My entire body was paralyzed. A Veteran's organization even donated a motorized wheelchair that I could control with my mouth. I had to learn to talk, feed myself, care for myself, write...all the basics. I had to learn to stand and walk again which took a while. I lived in a senior facility for a while and moved to a intensive rehab facility. I truly wish I went to the rehab facility first...that is where I made the most progress. I graduated from a ceiling lift to a slider board, then incorporated a walker...eventually to a cane and then just my AFO. I still do my own progress checks and stuff at home. I do have drop foot on the left side. I was on a lot of medications...A LOT. Anti-seizure meds, mood altering meds, klonopin, adivan but I absolutely hated the way they made me feel. I was able to work with my neurologist and physician to get off of them quickly. Now I just get my rituximab infusions every 24 weeks. I am due for my next scans at the end of this month...which they haven't done since I got out of the hospital so I am very excited to see what we will see in them!
I know that is a lot...but I am happy to elaborate or answer more questions.
And fortunately...my family has quite a few videos of the entire experience from beginning to now. Interviews with doctors, the different phases of the on set...I have photos of my face and my eyes drifting in the beginning.
@@ashleythompson6573 Thank you for describing this in detail. There a number of red flags related to Anti NMDA IN THERE. The movie brain on fire 🔥 and the book by Susannah Cahalan covers this - very similar to your description. I'm glad that they finally picked it up and things are better. Wish you well.
Great video!
Can you please talk about cannabis induced psychosis- schizophrenia like vs schizophrenia.
We've covered the association between cannabis and schizophrenia in more detail in this article psychscenehub.com/psychinsights/psychopharmacology-cannabis-and-mental-health/
Please Can you send me thé causes of this maladie
Discussed here. It is an autoimmune condition. In some cases associated with ovarian teratoma or other tumours. But often a viral infection triggers precedes the condition which is likely due to viral induced autoimmunity. psychscenehub.com/psychinsights/anti-nmda-receptor-encephalitis-a-synopsis/
Thank you sir 🙏
Hello sir, how you doing ? I have weak memory so visited doctor for same and he prescribed me memantine 5mg. I am aged 32. I can take it safely? Somewhere memantine could lead to this disease? Could you please recommend any memory enhancing medicine ? Thanks air
No memantine cannot lead to this disease. Memantine improves memory functioning through NMDA antagonism. With memory issues always rule out medical aspects, Vit B 12, folate, Iron, Vit D deficiency , thyroid functions and other blood tests. Evaluation for ADHD can also be carried out. We have done a video on this. PS not medical advice
Do u think all the man who have high white cell count during their psychosis should get testicular ultrasound to rule out testicular teratoma???
Tests should always be combined with the clinical picture. There are many other reasons why a white cell count increases. One of the most common reasons can be an infection.
@@PsychiatrySimplified yes ruled out infection, urinanalysis negative , chest abdo exam clear. Is it common finding in psychosis for WBC to be very high in range of 20...??? High wbc Was treated with antibiotics
@@summer7529 again it is to do with clinical examination. A doctor should be able to examine and ascertain if a testicular ultrasound is needed.
@@PsychiatrySimplified yes only if doctors are thinking of teratoma. Not many medical reg or psych reg will think oh lets examine testis of a psychotic patient. I know high wbc is not related to testicular teratoma. But have you found high wbc of no known origin in psychosis is that a common finding? Btw thanks a lot for this channel its highly educative and you explain all so very beautifuly. I like you how in your busy schedule you are able to teach and make videos. Kudos to you .
@@summer7529 acite stressors or illnesses can lead to elevated leukocyte count.
How often this disease is diagnosed?
This is a relatively rare condition.
@@PsychiatrySimplified is scary that people was judged as crazy when in reality had this disease
Hello, do you know any documented cases to kids?
Merdar Lucian-Pavel literature suggests that around 40 percent of anti nmda encephalitis cases are documented in children - case has been documented in 21 month toddler. The mean age is 25 but SD 14.8 so younger cases are present in kids psychscenehub.com/psychinsights/anti-nmda-receptor-encephalitis-a-synopsis/
@@PsychiatrySimplified thank you for the video and article, not to many info around it.
My son is doing seizures and having similar symptoms as in brain on fire movie for an long time, all tests came back negative. Now we wait for Anti-NMDA tests, because of that movie.
Merdar Lucian-Pavel I'm sorry to hear - I wish your son and your family well and hope all goes well.
Merdar Lucian-Pavel article on paediatric autoimmune encephalitis nn.neurology.org/content/7/2/e663
@@PsychiatrySimplified thank you so much for the info, added your video and links to my post on our own journey dany.fyi/updates/brain-on-fire-or-anti-nmda-receptor-encephalitis/
Mmmm m😅
Only females get this ?
Miguel R higher incidence in females 4:1 in males may be associated with testicular tumours psychscenehub.com/psychinsights/anti-nmda-receptor-encephalitis-a-synopsis/
Can you recommend any place I can get tested in California?
Miguel R this specialised testing can be ordered by psychiatrists/ neurologists etc. Please speak to your doctor and they should be able to organise this.
Thank you