42177
39499

It's Not Mental but Looks Like It - Autoimmune Encephalitis

Health, well-being, medicine, aging.

It's Not Mental but Looks Like It - Autoimmune Encephalitis

Postby Anti-NMDA Mom » Jun 8th, 2017, 11:57 am

Hi board members. My goal today is to help people understand a rarely-diagnosed condition that is gaining recognition in the medical community since its identification in 2007 by Dr. Josep Dalmau.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4495821/
Abstract
Anti-N-methyl-d-aspartate (NMDA) receptor encephalitis is a form of encephalitis occurring primarily in women and associated with antibodies against NR1 or NR2 subunits of the NMDA receptor. As a potentially treatable differential for symptoms and signs seen in neurology and psychiatric clinics, clinicians practising across the lifespan should be aware of this form of encephalitis. Common clinical features include auditory and visual hallucinations, delusions, behavioural change (frequently with agitation), impaired consciousness, motor disturbance (ranging from dyskinesia to catatonia), seizures, and autonomic dysfunction. We present a review of the literature on the disorder, including its clinical presentation, differential diagnosis, epidemiology, treatment and prognosis.

Anti-N-methyl-d-aspartate (NMDA) receptor encephalitis was first described in 2007 by Dalmau and colleagues, who identified 12 patients presenting with prominent neuropsychiatric symptoms. All were confirmed to have serum or cerebrospinal fluid (CSF) antibodies to the NMDA receptor.1 In a subsequent case series of 100 patients, 77 initially presented to psychiatric services. Although patients with anti-NMDA receptor encephalitis exhibit high rates of psychiatric disorder, psychiatrists may not be fully aware of the diverse presentation of this disorder. Given the high mortality rate (up to 25%), the likelihood of presentation across the age range and the potential for treatment, a high index of suspicion is warranted by clinicians.


There have been two confirmed cases treated here in Kelowna, several throughout BC, hundreds more in this country, and thousands worldwide. However, there could be thousands living with this disease without even knowing it. I have tried, repeatedly and unsuccessfully, to reach media outlets and contributing members from within the psychiatric community with the information that could save many from suffering, and save lives. However, this is 'not news'. I disagree, it is very much news that has been covered by major networks in the US, by CTV, and many others. In fact, a movie has been made starring Chloe Grace Moretz, Richard Armitage, and Carie-Anne Moss --Brain on Fire. To the best of my knowledge, the movie is to be released straight to Netflix later this year.

There is no doubt, with Kelowna being such a small town, there might be people on here who already know who we are and what we've been through, and now that our family is 2 years post-DX, it's time to use what we've learned to help out those who need it. Recently, I have come to learn that a family in Vernon has begun this journey. I would like to reach out to this family, because I have already been a parent to a young woman having to recover from this serious, sometimes deadly disease. If you know who these people are, please shoot me a PM.

Thanks for reading.
Last edited by Anti-NMDA Mom on Jun 13th, 2017, 8:09 am, edited 1 time in total.
Anti-NMDA Mom
 
Posts: 5
Likes: 0 post
Liked in: 4 posts
Joined: Jun 8th, 2017, 11:41 am

Re: Autoimmune Encephalitis

Postby Glacier » Jun 8th, 2017, 8:42 pm

Thanks for the info. I will watch the documentary when it comes out on Netflix. Sorry, I don't know the family hit with this in Vernon, but someone does, I'm sure.
User avatar
Glacier
Buddha of the Board
 
Posts: 24938
Likes: 2113 posts
Liked in: 7101 posts
Joined: Jul 6th, 2008, 10:41 pm

Re: Autoimmune Encephalitis

Postby Anti-NMDA Mom » Jun 12th, 2017, 2:07 pm

Thank you, Glacier.

There's another (third) case here in Kelowna now. I've been through this, and my heart aches for the family. My daughter had a follow-up today and she was asked to find out if I would be willing to help. We will be put in touch with one another by the care team as soon as it's reasonable.

Lady tehMa likes this post.
Anti-NMDA Mom
 
Posts: 5
Likes: 0 post
Liked in: 4 posts
Joined: Jun 8th, 2017, 11:41 am

Re: It's Not Mental but Looks Like It - Autoimmune Encephali

Postby Anti-NMDA Mom » Aug 11th, 2017, 9:05 am

An update:

The 20 yr old young woman recently diagnosed was caught in time at VGH, received treatment right away, and did not have to spend so long in care. Ironically, it was at KGH this girl was almost re-diagnosed as having a psychiatric condition. It took advocacy and assertiveness to prevent her from a life-threatening situation. She had an atypical presentation that caused confusion at KGH especially considering certain psychiatrists' egos have a difficult time overcoming cognitive bias when a patient presents with psychosis to begin with. Added to the challenge is when patient advocates have more clinical knowledge on the condition.

More on cognitive bias here: https://www.youtube.com/watch?v=Lnm7AhL5BBM

Autoimmune Encephalitis is gaining recognition and is barely beginning to be diagnosed more reliably. It was due to knowing about my daughter's case that the psychiatrist at VGH was able to zero in on what the problem could be.

I chose now to make an update because of the current thread regarding the woman who attempted to break into a family's home in West Kelowna. The scenario is chillingly familiar to thousands of families worldwide whose lives have been permanently altered due to Autoimmune Encephalitis... which there are greater than 25 different kinds other than Anti-NMDA!
Anti-NMDA Mom
 
Posts: 5
Likes: 0 post
Liked in: 4 posts
Joined: Jun 8th, 2017, 11:41 am

Re: It's Not Mental but Looks Like It - Autoimmune Encephali

Postby gman313 » Aug 11th, 2017, 9:41 am

Thanks for sharing.

Is there a standard test for this? What is the likelihood of treatment success?
gman313
Grand Pooh-bah
 
Posts: 2011
Likes: 698 posts
Liked in: 693 posts
Joined: Sep 15th, 2008, 8:03 pm

Re: It's Not Mental but Looks Like It - Autoimmune Encephali

Postby Anti-NMDA Mom » Aug 11th, 2017, 10:26 am

Thanks for your interest, every person who knows is another person that can help.

My daughter had a heck of a time getting taken seriously; they thought she was a hypochondriac for the longest time. There was always something wrong with her... i mean ALWAYS, yet every test run on her came back negative for problems of any kind. However, there is a test for it, and it requires a lumbar puncture (spinal tap) for conclusive diagnosis, and special processing to find the titres. The antibodies can also show up in the blood, another specific test. There are two labs in Canada, a private lab in Calgary, and a children's hospital in Ontario. Having been through this, the private lab in Calgary is deficient in its practices, and samples need to be sent to Pennsylvania or Barcelona (yes, to Spain) for identification of any other antibodies (>25). Mayo clinics in the US also do testing, but I don't recall which ones because physicians here are encouraged to rely on Pennsylvania and Barcelona, where the team who identified this in 2007 are based, and they have the testing accuracy and research data that the other labs lack.

Treatment success varies on severity. My daughter has made remarkable progress in two years, but has reached a point where the remainder of her recovery may take years. As it stands now, she’s been left with an acquired brain injury, which has made it difficult for her to, for example, hold a job. She may not overcome this due to some things beyond our control that took place during her recovery process. The brain injury may also be from the extraordinary number of seizures she had in addition to a possible lack of oxygen when she crashed in ICU. She spent two weeks on a ventilator, and EEGs showed minimal brain function left only in her brain stem. Treatment had begun, and a pacemaker was not necessary, thank god. Treatment can include intravenous immunoglobulin (IVIG), plasmapheresis, steroids, various immunosuppressants, and chemotherapy drugs. My daughter had steroids and IVIG as first-line treatments, and when she did not respond to those, she had cyclophosphamide and rituximab. Yes, she lost her waist-length black, curly hair. The oral steroids were used for roughly five months in total.

There was a family in Australia, whose physicians advised disconnecting from life support based on the ‘minimal’ brain function of the girl. The family refused, and kept her alive in a coma for three years, and when they heard about this condition, investigation and diagnosis followed. It’s been many years, but this young woman is now doing well. I’m not aware of her ongoing deficits.

Another woman in Europe was being unsuccessfully medicated to treat schizophrenia for several years, and once her spinal fluid was tested, the Anti-NMDA diagnosis was made, treatment began, and she’s since made a full recovery to a point where she was better than ever before, which makes it fairly obvious, that like other autoimmune conditions, this had been active in her long before it masqueraded as schizophrenia.

Almost every family I’ve spoken with has also experienced having to deal with violence from the afflicted person in addition to their taking all their clothes off during an episode.

Let’s face it, it’s only just been identified in 2007, let alone tracing it back to how long it was active in each patient before it became acute.
Anti-NMDA Mom
 
Posts: 5
Likes: 0 post
Liked in: 4 posts
Joined: Jun 8th, 2017, 11:41 am

Re: It's Not Mental but Looks Like It - Autoimmune Encephali

Postby gman313 » Aug 11th, 2017, 10:41 am

Thanks for the info - and all the best for your family. scary stuff
gman313
Grand Pooh-bah
 
Posts: 2011
Likes: 698 posts
Liked in: 693 posts
Joined: Sep 15th, 2008, 8:03 pm

Re: It's Not Mental but Looks Like It - Autoimmune Encephali

Postby Anti-NMDA Mom » Aug 12th, 2017, 7:39 pm

Here is a link to the movie on YouTube: https://www.youtube.com/watch?v=dQRMVYVGII4

Susannah's case is less severe than my daughter's, but I'll say this, in the movie when her coworker, Margo, walks down the hospital corridor and you begin to see her crack.... that was me. That was me every day for 7 months of hospital visits.

The seizures, accurate.
The outbursts, accurate.
The terror.... you don't know until you live it.

3 people like this post.
Anti-NMDA Mom
 
Posts: 5
Likes: 0 post
Liked in: 4 posts
Joined: Jun 8th, 2017, 11:41 am


Return to Health

Who is online

Users browsing this forum: No registered users and 1 guest