![International Autoimmune Encephalitis Society](/img/default-banner.jpg)
- 48
- 95 137
International Autoimmune Encephalitis Society
United States
เข้าร่วมเมื่อ 22 พ.ย. 2016
The International Autoimmune Encephalitis Society, (IAES), TH-cam channel strives to raise awareness and education about this group of diseases to ensure patients are identified early. We provide science-based information backed by trusted medical experts in the field of autoimmune neurology. Funny as well as emotionally impactful educational videos are included. Of noteworthy mention is the video introducing AE Trivia Playing cards, a ground breaking educational and rehabilitation tool for AE Warriors® created by IAES and renown AE expert, Dr. Josep Dalmau.
IAES is an established family/patient-centered non-profit organization with a history of supporting AE patients through their journey from diagnosis to recovery.
IAES is an established family/patient-centered non-profit organization with a history of supporting AE patients through their journey from diagnosis to recovery.
Paraneoplastic Autoimmune Encephalitis
UCB sponsors the 2024 Speaker Series celebrating Autoimmune Encephalitis Awareness Month.
Hesham Abboud, MD, PhD is the Director of the Multiple Sclerosis and Neuroimmunology Program at University Hospitals Cleveland Medical Center and a staff neurologist in the Parkinson’s & Movement Disorders Center. He is an Assistant Professor of Neurology at Case Western Reserve University School of Medicine.
This is an engaging presentation with helpful visuals throughout that allow both clinician and family member, or patient to follow along and absorb a complex topic with ease. If you are a patient with a diagnosis of autoimmune encephalitis, paraneoplastic or not, you will gain a greater understanding of the disease as Dr. Abboud has a distinct talent as an educator.
Dr. Abboud begins by defining Paraneoplastic AE, which is thought to impact 1 in 300 cancer patients. By reviewing how the clinician arrives at the diagnosis, he reviews several MRIs showing grey matter and white matter-focused examples explaining that inflammation in paraneoplastic cases is caused by T-cells, not the antibody. B cells in this situation do not cause harm. The difference between intracellular and extracellular antibodies is illustrated with clear slides. Specific treatments are utilized in these cases. Dr. Abboud explains why some common treatments in non-paraneoplastic cases are not required, such as Rituxan and plasma exchange. 3 cases, including video footage, are presented illustrating the wide spectrum of presentations and challenges treatment decisions clinicians are faced with to ensure the best possible outcomes.
Visit our website: www.autoimmune-encephalitis.org
Your donations help us continue our important work.
autoimmune-encephalitis.org/donate/
Autoimmune Encephalitis is a group of inflammatory brain diseases characterized by prominent neuropsychiatric symptoms. These patients are often believed to have psychiatric presentations, but they do NOT. Common clinical features include a change in behavior, psychosis, seizures, memory, and cognitive deficits, abnormal movements, dysautonomia, and a decreased level of consciousness. Psychiatrists and Emergency Room Physicians are often the first medical professionals who see these patients. Clinicians must consider the possibility of an autoantibody-related etiology and become familiar with the red flags suggestive of synaptic autoimmunity as the underlying cause in all cases of first-onset, out-of-the-blue psychosis. A high level of suspicion is necessary as autoimmune encephalitis is treatable with immunotherapy. Firm evidence shows that earlier recognition and treatment lead to improved outcomes. It is important to note, that the disorder is refractory to antipsychotics; indeed, antipsychotic agents make affected patients much worse, even to the point of developing something akin to neuroleptic malignant syndrome.
The International Autoimmune Encephalitis, (IAES), is a registered 501 C 3 non-profit and is the only Family/Patient-centered organization for people diagnosed with Autoimmune Encephalitis. Leading with integrity, IAES strives to advance services, education, increased awareness, and research for this group of diseases. IAES provides science-based information backed by trusted medical experts in the field of autoimmune neurology. IAES is the only organization that provides all-inclusive services from diagnosis to recovery and the many challenges experienced in that journey.
Hesham Abboud, MD, PhD is the Director of the Multiple Sclerosis and Neuroimmunology Program at University Hospitals Cleveland Medical Center and a staff neurologist in the Parkinson’s & Movement Disorders Center. He is an Assistant Professor of Neurology at Case Western Reserve University School of Medicine.
This is an engaging presentation with helpful visuals throughout that allow both clinician and family member, or patient to follow along and absorb a complex topic with ease. If you are a patient with a diagnosis of autoimmune encephalitis, paraneoplastic or not, you will gain a greater understanding of the disease as Dr. Abboud has a distinct talent as an educator.
Dr. Abboud begins by defining Paraneoplastic AE, which is thought to impact 1 in 300 cancer patients. By reviewing how the clinician arrives at the diagnosis, he reviews several MRIs showing grey matter and white matter-focused examples explaining that inflammation in paraneoplastic cases is caused by T-cells, not the antibody. B cells in this situation do not cause harm. The difference between intracellular and extracellular antibodies is illustrated with clear slides. Specific treatments are utilized in these cases. Dr. Abboud explains why some common treatments in non-paraneoplastic cases are not required, such as Rituxan and plasma exchange. 3 cases, including video footage, are presented illustrating the wide spectrum of presentations and challenges treatment decisions clinicians are faced with to ensure the best possible outcomes.
Visit our website: www.autoimmune-encephalitis.org
Your donations help us continue our important work.
autoimmune-encephalitis.org/donate/
Autoimmune Encephalitis is a group of inflammatory brain diseases characterized by prominent neuropsychiatric symptoms. These patients are often believed to have psychiatric presentations, but they do NOT. Common clinical features include a change in behavior, psychosis, seizures, memory, and cognitive deficits, abnormal movements, dysautonomia, and a decreased level of consciousness. Psychiatrists and Emergency Room Physicians are often the first medical professionals who see these patients. Clinicians must consider the possibility of an autoantibody-related etiology and become familiar with the red flags suggestive of synaptic autoimmunity as the underlying cause in all cases of first-onset, out-of-the-blue psychosis. A high level of suspicion is necessary as autoimmune encephalitis is treatable with immunotherapy. Firm evidence shows that earlier recognition and treatment lead to improved outcomes. It is important to note, that the disorder is refractory to antipsychotics; indeed, antipsychotic agents make affected patients much worse, even to the point of developing something akin to neuroleptic malignant syndrome.
The International Autoimmune Encephalitis, (IAES), is a registered 501 C 3 non-profit and is the only Family/Patient-centered organization for people diagnosed with Autoimmune Encephalitis. Leading with integrity, IAES strives to advance services, education, increased awareness, and research for this group of diseases. IAES provides science-based information backed by trusted medical experts in the field of autoimmune neurology. IAES is the only organization that provides all-inclusive services from diagnosis to recovery and the many challenges experienced in that journey.
มุมมอง: 922
วีดีโอ
Prognostic Indicators for Functional and Cognitive Outcomes with Dr. Sergio Muñiz-Castrillo
มุมมอง 4376 หลายเดือนก่อน
Dr. Sergio Muñiz-Castrillo is a Stanford University Scholar and specialist in autoimmune encephalitis and paraneoplastic neurological syndromes. He provides an excellent overview of the prognostic factors and cognitive, and functional outcomes and indicators around relapses in autoimmune encephalitis patients. UCB sponsors the 2024 Speaker Series celebrating Autoimmune Encephalitis Awareness Mo...
Seronegative (or antibody-negative) Autoimmune Encephalitis with Josep Dalmau, MD, PhD
มุมมอง 2.5K6 หลายเดือนก่อน
UCB sponsors the 2024 Speaker Series celebrating Autoimmune Encephalitis Awareness Month. Josep Dalmau, MD, PhD IDIBAPS-Hospital Clinic, University of Barcelona, and Caixa Research Institute, Barcelona (Spain). Adjunct Professor of Neurology, University of Pennsylvania, Philadelphia, USA Dr. Dalmau is a neurologist specializing in Neuro-oncology, paraneoplastic syndromes, and autoimmune encepha...
Pediatric Autoimmune Encephalitis with Dr. Mellad Khoshnood
มุมมอง 1.7K6 หลายเดือนก่อน
UCB sponsors the 2024 Speaker Series celebrating Autoimmune Encephalitis Awareness Month. Dr. Mellad Khoshood has invited clinicians to reach out and consult with him on any case where Autoimmune Encephalitis is suspected. He can be reached at mmkhoshnood@gmail.com or mkhoshnood@chla.usc.edu Dr. Mellad Khoshnood is a Clinical Assistant Professor of Neurology (Clinician-Educator), and Child Neur...
The Treatments for Autoimmune Encephalitis with Dr. Grace Gombolay
มุมมอง 1.7K6 หลายเดือนก่อน
This is the first of a 5-part Speaker Series celebrating Autoimmune Encephalitis Awareness Month 2024 hosted by IAES and sponsored by UCB. Dr. Gombolay begins her presentation with an overview of how Autoimmune Encephalitis is diagnosed, the many disorders that mimic the presentation, and the various antibody tests conducted. She takes us on a deep dive of the treatments. Reviews what each trea...
We Won't Stop Dreaming
มุมมอง 6976 หลายเดือนก่อน
This is the 8th annual AE awareness video IAES has produced. IAES holds the rights to the song, ‘We Won’t Stop Dreaming” by Pink Zebra. Autoimmune Encephalitis Awareness Moth is sponsored by UCB. Your donations help us continue our important work. autoimmune-encephalitis.org/donate/ Visit our website: www.autoimmune-encephalitis.org We hope you enjoy our awareness videos featuring AE Warriors (...
12 Daze of Christmas
มุมมอง 778 หลายเดือนก่อน
Originally created in 2015, this spoof version of The 12 Days of Christmas kicks off some holiday fun while educating the public about Autoimmune Encephalitis. Sung by Barbara Layt Vujaklija and written by Barbara Layt Vujaklija and Tabitha Orth. The 12 Daze of Christmas takes you through the challenge of finding a neurologist familiar with this rare group of diseases, the difficult testing the...
Understanding Clinical Trials For Autoimmune Encephalitis
มุมมอง 2899 หลายเดือนก่อน
Dr. Daria Muir of the International Autoimmune Encephalitis Society hosts this wonderfully informative presentation with Jeffrey Gelfand MD, MAS, FANN, at the University of California San Francisco (UCSF) about Clinical Trials in Autoimmune Encephalitis. Dr. Gelfand begins the discussion by explaining how brain inflammation is currently treated using treatments that have been successful in othe...
My Month in Hell - Autoimmune Encephalitis Misdiagnosed as a Psychiatric Disorder
มุมมอง 7K10 หลายเดือนก่อน
Ryann Henn is an ambassador for the International Autoimmune Encephalitis Society. Diagnosed with anti-NMDA receptor encephalitis, she shares her very personal story of how she was misdiagnosed and mistreated by staff at a well-known rural local hospital. The goal of this video is to help bring awareness of Autoimmune Encephalitis to medical professionals by shedding light on the repercussions ...
If You Could Share 1 Thing with Your Neurologist, What Would It Be?
มุมมอง 270ปีที่แล้ว
IAES’ “Tuesday Tries” meets on Zoom on the last Tuesday of every month. Moderated by Tessa McKenzie, IAES' Chief Resilience Officer, caregivers, and patients gather to celebrate their critical milestones in recovery and care and build a more resilient network! "Tuesday Tries" is about practicing a strengths-based approach by “normalizing the try.” Tessa provides prompts for reframing perceived ...
Autoimmune Epilepsy
มุมมอง 3Kปีที่แล้ว
Dr. Claude Steriade is a neurologist from the New York University School of medicine and is affiliated with the NYU Langone Hospitals. She is a published researcher on the topic and has fast become an expert in her field and one her peers rely on. Learning objectives: • Discuss conceptual definitions of autoimmune seizures and epilepsies and their practical implication in clinical practice. • D...
The Role of Behavioral Medicine in Autoimmune Encephalitis
มุมมอง 603ปีที่แล้ว
Dr. Grace Tworek addresses the vital topic of ongoing supportive services AE patients, and family members require that is largely absent in our journey. Patients & caregivers learn of the support services and tools they can incorporate into their daily lives to aid them in recovery, rehabilitation, and reclaiming their lives in goal-oriented, practical ways with a focus on self-care. Dr. Tworek...
Pediatric Autoimmune Encephalitis
มุมมอง 3.2Kปีที่แล้ว
Autoimmune Encephalitis is a group of inflammatory brain diseases that are characterized by prominent neuropsychiatric symptoms. These patients are often believed to have psychiatric presentations, but they do NOT. Common clinical features include a change in behavior, psychosis, seizures, memory, and cognitive deficits, abnormal movements, dysautonomia, and a decreased level of consciousness. ...
Autoimmune Encephalitis Diagnosis & Misdiagnosis
มุมมอง 5Kปีที่แล้ว
Dr. Eoin Flanagan, Associate Professor of Neurology and Consultant in the departments of Neurology and Laboratory Medicine and Pathology at the Mayo Clinic (Rochester, MN), gives an outstanding presentation on how autoimmune encephalitis is diagnosed and red flags clinicians can look for that may indicate another culprit is at play. Whether you are a clinician treating this group of diseases or...
Autoimmune Encephalitis
มุมมอง 7Kปีที่แล้ว
This keynote presentation by Marianna Spatola, MD, PhD is the 2nd presentation in the 2023 Speaker Series celebrating Autoimmune Encephalitis Awareness Month. Dr. Spatola reviews the disease process from the prodromal stage to relapse/recovery and lasting deficits. The difference between intracellular and cell surface antibodies is explained and focus is given to the two most common types of AE...
Heroes And Dreamers ~ 2023 Autoimmune Encephalitis Awareness Month
มุมมอง 1.2Kปีที่แล้ว
Heroes And Dreamers ~ 2023 Autoimmune Encephalitis Awareness Month
How to Make the Most out of Your Doctor's Appointment
มุมมอง 2512 ปีที่แล้ว
How to Make the Most out of Your Doctor's Appointment
IAES Distinguished Service Award 2022 -Surprise Event
มุมมอง 852 ปีที่แล้ว
IAES Distinguished Service Award 2022 -Surprise Event
Shadazah, 'Daisy' Brown Discusses the value of her AV fistula
มุมมอง 3262 ปีที่แล้ว
Shadazah, 'Daisy' Brown Discusses the value of her AV fistula
Autoimmune Encephalitis: What Psychiatrists Need to Know
มุมมอง 1.3K2 ปีที่แล้ว
Autoimmune Encephalitis: What Psychiatrists Need to Know
See Me Brain Injury Awareness Month 2022
มุมมอง 1.2K2 ปีที่แล้ว
See Me Brain Injury Awareness Month 2022
Long term Cognitive Outcomes anti-NMDAr Autoimmune Encephalitis
มุมมอง 1.6K2 ปีที่แล้ว
Long term Cognitive Outcomes anti-NMDAr Autoimmune Encephalitis
Autoimmune Encephalitis (including Sero-negative) and Treatments with Dr. Mastura Monif
มุมมอง 3.9K2 ปีที่แล้ว
Autoimmune Encephalitis (including Sero-negative) and Treatments with Dr. Mastura Monif
Dr. Justin Abbatemarco AE Need for Comprehensive Care
มุมมอง 6362 ปีที่แล้ว
Dr. Justin Abbatemarco AE Need for Comprehensive Care
Dr. Ming Lim ~ Treatment and Best Outcomes for Pediatric Autoimmune Encephalitis
มุมมอง 3.2K2 ปีที่แล้ว
Dr. Ming Lim ~ Treatment and Best Outcomes for Pediatric Autoimmune Encephalitis
Unconditional ~ AE Awareness Month 2022
มุมมอง 4362 ปีที่แล้ว
Unconditional ~ AE Awareness Month 2022
Pulling Through ~Help for Families Navigating Life-Changing Illness with Catherine Jessop
มุมมอง 2212 ปีที่แล้ว
Pulling Through ~Help for Families Navigating Life-Changing Illness with Catherine Jessop
how can i get my daughters story on yiur page
This is exactly what I'm dealing with 😢😢😢 but I have yet to be admitted to the hospital due to covid being out again. course I've been offered counseling and I have been declining. I'm now in a wheelchair because my form of AE has now traveled down my neck moving down my spine. I just want to be admitted so somebody can figure out how to help me. 33:07 😭
This is exactly what I'm dealing with 😢😢😢 but I have yet to be admitted to the hospital due to covid being out again. course I've been offered counseling and I have been declining. I'm now in a wheelchair because my form of AE has now traveled down my neck moving down my spine. I just want to be admitted so somebody can figure out how to help me. 33:07 😭 God, help us all please!!!!
Such a wonderful day to find out Dr Obulor on TH-cam can cure Autoimmune disease with herbal medicine, im glad that i have gotten rid of it completely. I am very happy and grateful...
Such a wonderful day to find out Dr Obulor on TH-cam can cure Autoimmune disease with herbal medicine, im glad that i have gotten rid of it completely. I am very happy and grateful...
Ontario needs to be educated on this. My Abby didn't stand a chance. She was 10 and by all accounts, perfectly healthy prior to a fever which caused a seizure and coma. She was refused an MRI the night upon arrival to londons hospital. EMS came to our home and dismissed it as the flu. We were let down by our entire system. On every level. She fought for 127 days. Education is key to saving lives of these young children. 6 months prior we caught covid and thought we all recovered. Covid is a game changer. Nov 6th 2022.
I am heartbroken to hear your story. IAES will continue to work to create positive change so stories like yours never happen again. Please know our hearts are with you and your family. we can't begin to express our sorrow at your loss.
@tabithaorth1040 Thankyou. My 6 year old son and I have been trying to rebuild our lives through counselling since. Our entire lives forever changed. I have made it a mission to connect with families in Southweatern ontario going through similar medical emergencies to ensure they know what to ask the doctors and provide information once they have a diagnosis of encephalitis, ane or anec or anything related as there really should be an umbrella term created for these conditions as they are very similar. But it all starts with awareness and accountability 💜
What doctors where treat this?? Who can treat this? It's been 3 years now, and my 17 is in Austin State Mental Hospital because we can't get this treated effectively!! Somebody help!
Can feel your pain Ryan. Lost my mom 20 days ago because of this shitty disease 🥹
I spent two weeks in a psychosis ward. After been bitten by a stray dog in the countryside. A few months later my brain felt like it was on fire. I think I couldn’t fight it but by the grace of God I’m still here.
How on earth can this disease be considered “uncommon” or even rare when it is not routinely tested for. How many people with schizophrenia actually have this that have never just been plain lucky enough to see a neurologist.
No exercise facilities is awful for a psychiatric hospital.
Do you all remember the psychosis and hallucinations?
I was treated like this once because I took a reaction to a med the dr had give me . But thy thought I’d a overdose ❤️❤️
My heart goes out to you , ❤keep head up , your a star ⭐️please keep in touch ❤️❤️❤️🙏🏻😘
If you take a look at the symptoms people have after coming off s benzo. They have all the exact symptoms as encephyltis. I beleive benzos taken over a long period of time can cause encephylitis.
My suspicion is chronic exposure to lead. Lead is a neurotoxin of which is also an immunosuppresant which for anyone, including adults exposed to even low levels of lead BLL <1-3mcg /dL (half a cup of blood) over months to years without being completely removed from exposure can wreak havoc on all soft tissues, since lead is mistaken for calcium in the body. The most recent research papers on lead have linked to autoimmune diseases such as RA, neurodegenerative diseases like dementia and Parkinson's, also Autism is connected to lead exposure all of which for some people can be as low as <3mcg/dL which there are measurable cognitive decline. Typically you hear treating by mcg per deciliter, but really you should treat the symptoms. Essentially, your body is having an "allergic reaction" to being exposed to lead which is a poison, and there is no threshold even for adults. My symptoms started with undiagnosed dizziness which was euphoric and had progressed to the point where I had motion sickness. Then one day like you all know: I woke up missing a large part of my memory, forgot my birthday, couldn't form cogent thoughts or sentences. BLLs at <2mcg/dL. Furthermore, if it's not in your house it's in the soil, since it is not biodegradable. How'd it get there? Tetraethyl Lead in gasoline from 1921-1990's for U.S. of which is organic, meaning it's absorbed easier (even through skin) than inorganic typically found in your water or paint dust (also wood varnishes before 1978). Just something to look into is: "Are there any sources of lead in my home, and if you're in an urban area: the soil has been saturated with tetraethyl lead for a good 70ish years." I hope this helps, it did me.
My sisters mental health started to plummet after disturbed sleep for weeks, Monday we knew she needed help, she was admitted to the psychiatric ward for observation and by Friday she was in isolation, she kept trying to hurt herself, and 24 hour watch, she was almost catatonic she crashed so fast, she had had no prior mental health issues and they tried so many meds and she just didn’t respond she was there almost 3 weeks nothing was working, so the next step was electro shock therapy it was about 745pm the the shock therapy was booked for 8am the following day and a doctor called her husband telling her the results had come back this evening and she had anti NMDA receptor encephalitis, we had no idea what that meant, and she was now to be moved to the brain ward but because of the psychosis she had to have a 24hour carer, it took months for her to recover and was at a rehabilitation facility for a long time, she recovered completely but does get overwhelmed a lot now which we manage, they never found a teratoma, 🤷🏼♀️
I had autoimmune encephalitis ADEM from a vaccine. I was a nurse but lost my license due to brain injury.
How to help my child? 16 years old, Autism , unexplained seizures, personality change, she is pointing on forehead almost everyday, she is on seizures meds, since 2 months limping, fingers joints swelling, pain, mri , meg test, pet scan, a lots od eeg normal. No findings. We don’t know what to do… doctors are increasing seizures meds but its not helping :( reumatologist don’t know either
People with autism can have seizures appear from puberty on. It sounds like this is the case with your daughter. Seizures will create behavior change. You report she has had very intense evaluations. This does not sound like AE. The doctors seem to be on the right track. They need to control the seizures. This can take time to find the right combination of seizure medication that works best for the patient. Any neurologist with a specialty in seizure activity could be consulted on the case. You can ask the current doctor to reach out to a specialist with more advanced experience to confer on the case - just for your personal peace of mind. We hope things improve for your daughter soon.
Encephalitis is documented side effect of the covid vaccine 38% from AstraZeneca, 33.8% from Pfizer, 16.9% Moderna.
Very true! It reactivated a ton of viruses and they broke the blood brain barrier.
My husband lived with this for 2 years and was diagnosed the same and then dementia. I was losing hope he ended up in the er and did test and then a spinal tap that revealed this 😞 he isn’t responding well to the treatment but trying to keep faith. He was accused of using drugs 2 years of him sleeping all day hallucinations it’s been hell!! Thank you for sharing ❤
Look into hyperbaric oxygen (hard chambers)
You are very brave! And your mother and father were so right in what they did. It's not easy going against the system; but fighting for the ones you love is what counts! May God bless you and your family!,
Thank you Thank you so much for sharing your painful story. I will share your video near and wide. 🙏❤️
Happened after my 2nd MANDATED C0vid jab
Do not forget that all the other patients are still there. Still being mistreated.
in 2007 i had like a spark in my brain, i immediately started to feel unwell , heart beating and breathing was hard , i did medical exams and nothing was wrong , but i after a while i felt confused , with loss of memory and in a state of semi-consciousness. I was to several psychiatrist for treatment, but nothing helped. I was cut off from my personality, knew nothing about my life, was barely conscious . 2024 i am better and alive, but i am not the same person, and cant remember much before 2007, from my investigation i believe i had Encephalitis but never got the treatment. I hope people around me understood what i had. I hope i don't have brain damage, but my memory and personality are not the same as before!
How do I get help for this?
Did you sue ?????????????
I hear you
I never realized how many of us went through this for the past year I felt so alone
I’m sorry!
My right now replying to you I’m hearing hallucinations, and unable to walk properly so I’m sitting down. I’ve been deaf now also for the past 5 years because of encephalitis
That is so horrifying what you went through. don't understand how those nurses treated you like that and had zero ability to discern that something was not right and you weren't just simply a standard bipolar patient. And completely disregarded all of the PHYSICAL symptoms you were having. If I was one of those nurses I would have helped you escape and risk losing my job for it! It's really sad how many nurses seem to have zero empathy when that is the one field where you should be very empathetic. I have also had personal experience with biological issues affecting mental health. In fact a lot of mental health issues are caused by physical health issues but of course this was a VERY extreme case and very urgent and keeping you in this psych ward was very detrimental, because of the urgency of your condition but also because of the trauma they caused you. But this is a problem overall that needs to be addressed, the physical causes of mental health issues which modern medicine fails to acknowledge or recognize. And besides that, I think that how psych wards are run seriously needs to be changed. That is NOT okay you had zero option of discharging yourself and leaving. They are supposed to be there to HELP you not harm you, and if you decide for whatever reason that is not the right treatment for you, you should be able to leave at anytime and not held there against your own free will. So horrifying and disturbing. You could have easily not gotten to the treatment you needed and could have died and could have have ended up with very severe brain damage at their hands. I really hope that you have taken legal action against this hospital and this doctor. That is not okay what happened and they should not get away with it and awareness needs to be brought to how that was not acceptable.
yeah but all psychological issues are in the end brain-/body-related. but some can be treated and some not. the people that have so called "idiopathic" conditions rot in these institutions and suffer
Psychiatric hospitals are barbaric and inhumane. They should all be shut down. They do not help people and they cause further trauma and damage. Anyone presenting with psychosis should be screened for illnesses that cause encephalitis. A simple mosquito bite can cause encephalitis. Most psychiatrist have such a small scope of knowledge when it comes to brain illnesses.
Thank you Dr. K, lovely presentation!
Thank you for sharing. So much of this hits home, as my daughter got very sick and was told over and over that it was psych/ conversion disorder etc. They wanted to put her in a “psych rehab” and I didn’t believe it was psych and I knew it would traumatize her, as she would be so scared. She lost her memory, couldn’t walk or even hold her head up, talk above a whisper, was on a NG tube because it hurt her to eat. She lost most of her vision, at times her hearing. She had horrible mouth ulcers and they accused her of self inflicting. She couldn’t read or write any longer. YShe didn’t even know her own name or her family besides her dad and I. She’s gotten so much better from a treatment with naturopath and neurologist that has done TMS. I still believe she has something going on in her brain. She was seen at 3 major southern CA hospitals, all said psych. I’m scared to think what she would be like if I didn’t keep fighting and we paid out of pocket for doctors that has put us in huge debt. Doctors need education. She doesn’t have antibodies on her CSF, but they don’t know all the antibodies and it can be seronegative. We have much trauma. We had CPS called for medical neglect, despite my fighting for her care. One hospital tried to have me removed from bedside and I knew we were headed to medical kidnapping. I got her out of there. So much happened. People don’t all of a sudden change like this. It’s disgusting how uneducated doctors are and want to dismiss things as psych. God bless you.
The 😢😮g
Yes!! Be patient and remove that ovary if needed. But, Hooray!!!
Thank you so much Ryan for telling your horrible story. It really touched my heart. I am glad that your parents were able to get you the right treatment. I wish you all the bedst for the future and hope that the day will come where you will feel safe again 😊
They put me in a mental place for anorexia when i had a digestive disorder, a lockup, i understand! 6 months in hospital!
So many people I know have had the same thing happen,a few have died here nit being believed .most have gastroparesis ,mals and eds.
I am so sorry! Eating disorder patients are treated so poorly.
😭🙏🏼❤️
I feel like patients need other patients who will take no shit about anything.
There is a test for bipolar extremely dangerous but very effective. My brother the neurologist told me once if you weren't mentally ill the medication you are on would make you mentally ill. I'm such an advocate for everyone whenever I have to go in. I remember a girl on my floor spent a lot of time in isolation when her medication stopped working, I finally confronted the psychiatrist is she like me. He's like what do you mean and I'm like does she process medication more quickly than everyone else and he said I never thought of that. She got out of isolation because I spoke up, and I always spoke up. Patients would come to me with questions about medications and I would say that sounds like an undesirable side effect talk to your doctor. And then I'd report to the doctor all the side effects other patients had. I remember them bringing in nurses to learn and they always paired me with the misinformed nurses 😂 who asked me how are you so smart, you should be a nurse, and I was like, what did you expect. The answer was always not you. I had no problem correcting staff. And I made friends with that girl who was always going into isolation. No one liked to talk to her because she'd get the unit shut down and I remember in high school how people treated me with my mental illness and I did not want someone to feel as alone as I felt. Now I'm facing another autoimmune disorder my second one, and it sucks. My friend just found out he has this, and I'm just sad and scared for him.
My friend just found out he has this. They found him lost and confused. And I don't know how to help.
Sadly, No one at the behavioral health care clinic that you visited cares about your video. Certainly not the doctor. Not unless your family has the kind of money that makes a difference to people like that. It's not just that place, It's every place....The entire system is broken . Your story, however tragic, was told beautifully. I hope that you were able to get the proper care that ypu needed❤
Anyone Near Baltimore Maryland I Can Contact Im Getting The Symptoms Of Ataxia Balance And Neurological 😔🙏
I have these Symptoms Im getting pulling Balance Problems And Stiff Tight Neck its Scaring Me ato Death
Go to John Hopkins where they have an Encephalitis Center. Request an appointment with Arun Venkatesan, M.D., Ph.D. www.hopkinsmedicine.org/profiles/details/arun-venkatesan
I hope you got answers and the right help!
Feel free to write. On the other side of C-PTSD and work with some people. Thanks for your story.
See also Dr. Stephen Phillips, he has an online access to telehealth. His book is called "Chronic". His story is much like yours. You may have Ehlers-Danlos which does have a genetic test but many forms of autoimmune connective tissue disease process. Please see Dr. Karen Huebst vids on Lipidema and Lipolymphedema.
GALAXY Advanced Microbial Diagnostics is the ONLY company, cofounded by Dr. Edward Breitaxhaerdt and others...the ONLY way to find and visualize presence of this microbe by biopsy and advanced imaging. Like Lyme, not all people have the skin symptoms.
You could still have the infection - considered "stealth" infection - and your immune system is activated but cannot get rid of it because it HIDES IN NERVE TRACTS. Please research. Dr. Edward B Breitschwerdt, researcher at North Carolina State University.
Really great presentation. We are lucky to have Dr. Gombolay treating our daugher.