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AE Warrior Gains His Wings ~ World Encephalitis Day Special Edition

AE Warrior Gains His Wings ~ World Encephalitis Day Special Edition


Donate to Support IAES and our Life Saving Mission


International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

Your Tax deductible donations help us save lives and quality of lives.

Young Texas Woman with anti-NMDAr Encephalitis fights for her Life and the Life of her unborn child

Young Texas Woman with anti-NMDAr Encephalitis fights for her Life and the Life of her unborn child


Donate to Support IAES and our Life Saving Mission


International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

Your Tax deductible donations help us save lives and quality of lives.

anti-NMDAr AE Warrior Shares her Story

anti-NMDAr AE Warrior Shares her Story


Donate to Support IAES and our Life Saving Mission


International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

Your Tax deductible donations help us save lives and quality of lives.

Raising Awareness For Autoimmune Encephalitis Through February Until World Encephalitis Day February 22nd

Raising Awareness For Autoimmune Encephalitis Through February Until World Encephalitis Day February 22nd

Heather Smith’s story 

 

Hi Everyone! Today I thought I would share my story, at least to date. I’m 41. About a year ago I had a gastric bypass and have since lost about 100 pounds. I was the healthiest I had ever been in my life. Happy and really living life for the first time in many, many years. The migraines that had plagued me since my teens were gone. So was the type two diabetes, high cholesterol, etc.

About 3 months after the bypass everything changed. I started getting severe headaches. The kind where you would drop anything in your hands and just grab hold of your head. The kind where you can’t think, can’t eat, can’t do anything but pray the pain would stop. I was seen in the ER on at least 7 occasions. The doctors there just kept saying it was dehydration, the rapid weight loss from my bypass, and/or my migraines. They would not listen to me when I told them this felt nothing like the migraines that I have had all my life.

At the same time, myself and my family began noticing other changes. I was dizzy all the time. Walking in to walls at work, stumbling, and getting tunnel vision. My husband noticed changes in my speech, especially when I was tired. I would stutter, have trouble finding my words, or completely blank out in the middle of a sentence and not remember what I was going to say. Finally, on July 28, 2017, I went in with the worst headache I had ever had. The doctors, tired of seeing me, finally decided to order and MRI. The MRI showed 3 white matter brain lesions; #1 in the right superior parietal lobe, #2 in the left peritoneal region, and #3 in the left temporal parietal lobe. One of the left lesions looks like a MS type lesion, however the other two do not. I was admitted to the hospital and the doctors started looking for a cause.

Over the next 10 days I stayed in the hospital. The headache did not let up. The doctors ordered two different courses of High dose steroids, solumedrol and Depacon. I had no relief from either course. They also did multiple rounds of MRI’s, CT scan, blood work, and a lumbar puncture. The LP was positive for 2 oligoclonal bands. With no idea what was going on, I was discharged on day 10. By this point, I could not walk without assistance. I was prescribed stability crutches. I have rapid weakness, spastic reflexes, fatigue, head pain that is constant around the base of my skull, with multiple episodes of severe stabbing pain all over the crown of skull every day. I am dizzy and have vertigo 24/7. I have increasing difficulties in social situations and public spaces. I have tremors, and spasms that make my whole-body jump. I have insomnia. Bright light, moving lights and colors, and music all increase the head pain. I have stabbing pain behind my eyes that make my vision blur and eyes water. I have nausea and vomiting multiple times a week.

In October the doctors sent an encephalopathy panel to the Mayo Clinic for testing. I am NMDA negative, but positive for N-Type VGCC. This spurred them to do more CT scans to check for cancer. At this point they told me they suspected Autoimmune Encephalitis. The CT showed that I had an ovarian remnant left from a previous surgery as well as two tumors (believed to be endometrioma) on the left side and a small mass in the right abdominal wall. PET scan showed no activity in any of these locations and all masses are believed to be non-cancerous. I have also had a MOG test sent to the Mayo Clinic, but have not received any results from that testing. Currently, we are only treating symptoms. Gabapentin for the tremors and headaches, which does little to nothing. Trazadone to help me sleep, and promethazine for the dizziness. I am undergoing surgery on February 20th to remove the ovarian remnant and all 3 masses. My Endocrine Gynecologist does not believe that the masses are causing any of the Neuro problems. His notes state “Concern by neurology that ovarian remnant or tumor could be secreting a chemical causing her encephalitis. Low suspicion by OB/GYN for the remnant appears to be an endometrioma which are not known to produce these sorts of chemicals or hormones.” However, we are going forward with surgery to rule this aspect of the disease out.

All of my treatment is through the University of Iowa Hospital. I don’t see my Neuro again until a week after surgery. Thanks for sticking with my long story. I just don’t know what to do next or how to proceed. I’ve lost so much to this in the last six months. I’m basically housebound. I cannot drive, I lost my job, and my independence. I’m frustrated and constantly scared. Always waiting for the next bomb to drop.

Heather contacted International Autoimmune Encephalitis Society for help, support, and guidance. She has recently joined the Int’l AE Society Educational Support Group designed for patients with an AE diagnosis and their support people. We will be helping Heather through her journey and guide her in getting the best treatment possible for a best outcome.

72f61a 129d819a6c3e435db2e6354c7e32852b mv2 - Raising Awareness For Autoimmune Encephalitis Through February Until World Encephalitis Day February 22nd

First, make a donation to International Autoimmune Encephalitis Society, and provide your mailing address in the transaction. Every donation in the amount of $30 US or more will receive an AE awareness ribbon water bottle with the definition of what autoimmune encephalitis is on the back.a
When you receive your water bottle, e-mail a picture with you using your water bottle with your name and where you are from. All pictures will be posted on World Encephalitis Day, February 22nd.


International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

 

Your Tax deductible donations help us save lives and quality of lives.

Raising Awareness For Autoimmune Encephalitis Through February Until World Encephalitis Day February 22nd

February is our Month to Raise Awareness for Autoimmune Encephalitis

 

 International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

 

Your Tax deductible donations help us save lives and quality of lives.

The Dangers of Psychiatric Involuntary Commitment with Autoimmune Encephalitis Onset

The Dangers of Psychiatric Involuntary Commitment with Autoimmune Encephalitis Onset

The disease Autoimmune Encephalitis causes many neurological and psychiatric symptoms. To name a few: psychosis, depression, anxiety, balance problems, insomnia, visual hallucinations, aggression, agitation, delusions, memory loss, behavior changes (frequently bizarre), disorientation, confusion, problems talking, seizures, involuntary movements, distorted vision, weakness or numbness of part of the body, many of these symptoms are present for months and intermittently fluctuate.

Since many of these symptoms are also present with bipolar disorder or schizophrenia, and Autoimmune Encephalitis is a newly identified neurological set of disorders, many first-time medical responders such as emergency room personnel, psychiatrists and neurologists have never heard of these disorders or seen a case.  Given that psychiatric symptoms are usually the first and most prominent to present themselves in autoimmune encephalitis prior to more obvious neurological symptoms that are not seen in psychiatric disorders, patients with first time psychosis or other psychiatric symptoms are frequently misdiagnosed as a psychiatric case.  The patient is then detoured away from neurological evaluations and suspicions of central nervous system involvement and incorrectly admitted as a psychiatric patient.

This pitfall, due to lack of medical and public awareness of these disorders, puts the autoimmune encephalitis patient in danger of delayed diagnosis or worse: never being correctly diagnosed.  Autoimmune encephalitis is a highly treatable and reversible disease.  Timely diagnosis brings best outcomes and delays can result in permanent brain damage or a life threatening medical crisis with tragic consequences.

Involuntary commitment or civil commitment

Emergency involuntary institutionalization, (also known informally as sectioning or being sectioned in some jurisdictions, such as the United Kingdom), is a legal process through which an individual who is deemed by a qualified agent initiated by judges, law enforcement officials, physicians, or mental health professionals to have symptoms of severe mental disorder is court-ordered into treatment in a psychiatric facility or ward as an ‘inmate patient’. Involuntary examination can occur when there is evidence that the person:

1.  Possibly has a mental illness

2.  Is a harm to self, harm to others, or self-neglectful

Examinations may last up to 72 hours after a person is deemed medically stable.  Criteria for involuntary civil commitment are established by laws, which vary between nations. Commitment proceedings often follow a period of emergency hospitalization, during which an individual with acute psychiatric symptoms is confined for a relatively short duration (e.g. 72 hours) in a treatment facility for evaluation and stabilization by mental health professionals—who may then determine whether further civil commitment is appropriate or necessary. If civil commitment proceedings follow, then the evaluation is presented in a formal court hearing where testimony and other evidence may also be submitted. The subject of the hearing is typically entitled to legal counsel and may challenge a commitment order through habeas corpus rules.

Without medical treatment that addresses the cause of the patient’s symptoms, immune suppression for autoimmune encephalitis, the ‘inmate patient’ can not be stabilized for 72 hours and legal commitment court hearings commence. This tragic situation is further complicated by the fact that autoimmune encephalitis patients are anti-psychotic intolerant. Since many of the common medications given to treat bipolar disorder or schizophrenic patients are strong dopamine antagonists, the AE patient particularly anti-NMDAr encephalitis patients being neuroleptic intolerant, show: catatonia, rigidity, autonomic instability and altered level of consciousness after being administered these medications.  This outcome is an added ‘nail in the coffin’ to the now more certain possibility that the autoimmune encephalitis patient be sentenced to legal commitment.

It is important to note that once a patient is successfully diagnosed with autoimmune encephalitis, the danger of involuntary commitment to a psychiatric facility has not passed. As my wife’s caregiver, I have learned to be prepared in the event of her suddenly relapsing.  Prednisone historically successfully brings her back to base line with all psychiatric symptoms resolved within a very short period.

The need for an emergency prescription of 60 mg of prednisone became evident to me one memorable weekend.  My wife’s doctor was not in one day and I called and got a resident on the phone. I explained that she was in relapse and out of prednisone. She required an urgent refill to pull her out of her state and resolve her symptoms. The resident asked me to list her apparent presenting symptoms. I said, “Hallucinations, severe depression, balance issues and stupor.” 

The resident responded, “She takes prednisone for those symptoms?”

“Yes”, I reported.   “Prednisone has resolved all of her symptoms during several relapses.”  I realized he knew nothing about Autoimmune Encephalitis and began to feel the helplessness of being faced with a medical professional unfamiliar with her diagnosis so I said, “Look, call her doctor. He can explain to you why prednisolone works for her diagnosis. Right now, we need to get going on a refill!”  He said he would contact her regular doctor and call me right back. Five minutes later he called back to tell me the prescription was called in and ready for pick up. Lesson learned: always be ready for the relapse. The alternative of going to an emergency room and having her misdirected to psych was not an option I wanted to face in the mist of her medical crisis.

As a police officer with an associate degree in Police Science and Bachelors in both Administration of Justice and Sociology, I have had a lot of experience with administering civil commitments, incarceration on the psych ward.  To police officer’s it is known by the terminology ‘to Baker Act a civilian’.  While working in the department my routinely assigned patrol area was in the Ghetto between Milwaukee and Chicago. The Ghetto is the prime location for a police officer to acquire the most experience in any law enforcement department. In my work, it was common place to witness people with mental illness being shunned, talked down to, mistreated by family members or by members of the community who did not understand mental illness.

I still remember the 70-year-old woman who lived in constant fear because she was convinced three men who lived in her home would launch their attack some night soon and successfully slit her throat. I clearly recall a woman who was a survivor or Nazi Germany, asking me and my partner if we thought we could made it past the Germans outside who were gunning people down as they came and went from her home. She had survived war only to be forever psychologically traumatized by mentally reliving the terrors she had witnessed. This was no way for a person to live their life when help was available. Yet, involuntary commitment was the only way I could guarantee the help they needed was delivered in order for them to live their life to the fullest once more.

I did more civil commitments then any law enforcement officer in my 200-manned department. I acquired expert knowledge in civil commitment statutes in order to ensure that citizens received the best opportunity for a safe and improved quality of life by accessing the help and support they needed. Provisions under the statute included victims of drug and alcohol addictions. Some alcoholics or drug addicts are such a danger to themselves and others that they will literally consume lethal substance amounts or have such behavior change they are a danger to society. These citizens are subject to commitment under the statute.

My wife avoided commitment because I knew what to do to reverse the relapse, in her case it was 60 mg prednisone daily for 6 days. Unfortunately, many people with AE do not know that this treatment is documented in research covering treatment protocol for chronic maintenance addressing relapse. Many doctors have never heard of Autoimmune Encephalitis so they are equally unaware. In reading autopsy studies of AE patients, many had died because no one knew to give steroids in a relapse. Suicide, due to autoimmune depression, is also a common threat to the patient in a state of uncontrolled AE.  Insufficient awareness of autoimmune encephalitis continues to be responsible for legal commitments from misdiagnosis resulting in loss of life when an inexpensive treatment such as steroids can completely resolve the psychiatric presentation seen at onset or in relapse.

Placing a Patient on a Psych Hold can Lead to Long Term Legal Commitment

 

The usual course of action is a patient is placed on a 72-hour psych hold by a Judge based on a petition to the court made by a police officer or Doctor. Once this occurs, it is imperative that a family member or caregiver immediately hire an attorney versed in this area of law to represent the patient’s interests. The AE patient is now in the life-threatening situation of not receiving the medical treatment necessary and could find themselves legally committed jeopardizing their life and if they survive, their quality of life.  It is of the utmost importance that the danger this represents is understood by the patient’s family and that no delay for proper legal counsel occurs. If financial circumstances restrict you, going into credit card debit or selling what you can to acquire the legal funds should be considered to save your loved one’s life.

Once the Judge has approved the petition for a 72-hour psych hold, a court date is set for a hearing. An involuntary legal commitment can only be made by a Judge’s court order. Only a Judge can reverse the Judge’s order. The police or Doctor, who originally petitioned the court, can only petition the court to reverse the Judge’s order. The Judge who placed you on the psych hold is the only person who can give permission to arrange for you to be transferred to a medical hospital for a neurological work up. Therefore, if you do have a diagnosis and have been treated by an expert Neuro-immunologist in the past, they are not able to release you from a psych hold or prevent a court date from occurring as they did not place you on that hold and are not working at the facility where you are being held and are not overseeing your care. You are at the mercy of an attorney, their due diligence and research into your circumstances and the Judge in charge of hearing your case.

At this point, for the AE patient, expert testimony from a neurologist in the field of autoimmune neurology could prove to be invaluable.  However, this usually doesn’t happen. The Psychiatric medical community is used to looking at these cases not as a neurological condition but rather a psychiatric illness. Psychiatrists are convinced their diagnosis of bipolar disorder or schizophrenia is accurate and have a career in seeing the patient improve and stabilize with anti-psychotic dopamine antagonist medications. They are confident that their treatment will lead to their patient being stabilized. However, as previously discussed these treatments have a devastating effect on the AE patient. Once legally committed, often for a period of 6-month, that time usually needs to elapse before the case is heard again in court.  It is very hard to get around or get out of a commitment.   You can only be released by order of the Judge.

So, what can one do when psychiatric protocol is followed and a neurological protocol is ignored? The only option is to convince the judge that the patient is suffering from a neurological disorder and requires a full neurological evaluation to determine their diagnosis. In order to achieve this, an expert in the field of autoimmune encephalitis needs to be able to evaluate the patient to provide the medical evidence of the diagnosis. The Neuro-immunologist then needs to explain in court what medical treatments are needed. Warn against what subjecting the patient to psychiatric medications can do in worsening the patient’s condition and the ramifications of allowing the disease to progress unchecked. This needs to be accomplished to the Judge’s satisfaction while the Psychiatrist will be presenting their arguments for how they arrived at their psychiatric diagnosis and treatment plan.

As a patient advocate in the autoimmune encephalitis community, I have witnessed many preventable worse case scenarios.  I have witnessed cases where family felt making the financial sacrifice of hiring an experienced attorney specializing in civil commitment law was unnecessary and felt confident a court appointed attorney would suffice.  I have witnessed cases where a caregiver or family member felt they could speak in court for their loved one instead of a medical professional.  I have witnessed families feeling confident that they could advocate themselves out of the possibility of legal commitment either because they felt they knew their loved one so well or their medical condition or simply loved them so much that they truly felt nothing horrific would befall them.

Unfortunately, each time I have watched a family decide against expert legal counsel from the very first of hearing their family member has been placed on a psychiatric hold, I have had to watch the horrors unfold and a legal commitment occur. I lose sleep to this day over wondering what else I might have done or said to drive home the importance of acquiring immediate expert legal counsel when my mind drifts back to some of these cases. I lie awake sometimes wondering why my words of warning fell on silent ears. Simply stated: a lay person or court appointed attorney going up against a Psychiatrist with knowledge of protocol is a losing proposition. The attorney with good knowledge of civil commitment law working with an AE expert will usually win with the proper medical evidence in hand.

Yet, there is a better way to avoid all this heartache. Prepare in advance with family members for this relapsing remitting disease by having a plan in place when relapse occurs. In my wife’s case, her doctor has ordered 60 mg prednisone tablets orally with a prescribed titration when relapse occurs. Get a good diagnosis by an expert in AE so there is no doubt based on proper medical testing. Proper planning, if the medical condition is known after AE has onset, can avoid civil commitment and a subsequent financial and emotional hardship. Additionally, the AE patient should wear a medical ID bracelet, have their supporting medical documentation in a portable binder at home complete with MRI, EEG on discs if a prior diagnosis has occurred. Included should be all telephone contacts for their treating physician so they can be called by ER personnel.

And so, like the Thorn bird, a species known for its outstanding ability to sing, I write this blog with the hope that my warning song will be heard and a life saved.

Gene Desotell is a retired police officer with an Associate Degree in Police Science and Bachelors in both Administration of Justice and Sociology

ezgif 5 93c9805948f2 - The Dangers of Psychiatric Involuntary Commitment with Autoimmune Encephalitis Onset

International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

 

Your Tax deductible donations help us save lives and quality of lives.

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

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