My Month in Hell - Autoimmune Encephalitis Misdiagnosed as a Psychiatric Disorder
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- เผยแพร่เมื่อ 25 ส.ค. 2024
- 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 of being misdiagnosed with a psychiatric illness. Psychiatrists, ER attendings, and general practitioners are often the first medical professionals to see these patients at onset. All patients, no matter their age, who present with a first episode of psychosis (FEP), should have a lumbar puncture to rule out AE or a central nervous system disease. Autoimmune Encephalitis mimics bipolar disorder and schizophrenia. Antipsychotic agents commonly used for those disorders are refractory with AE patients. Indeed, antipsychotic agents make affected patients much worse, even to the point of developing something akin to neuroleptic malignant syndrome.
Ryann's goal for this video is to enlighten medical staff to think outside the box of AE’s common mimics when patients present with FEP. Ryann was misdiagnosed with bipolar disorder, mania, and borderline schizophrenia. As her brain was inflamed and under attack by her own immune system, the delay in an accurate diagnosis and treatment dramatically escalated her encephalitis. Ryann’s wish is that no one has to endure what she did. Ryann still struggles with the trauma she endured being misdiagnosed and put on a psychiatric hold. Ryann fought using all the inner strength she could muster until she finally got the help she needed.
Autoimmune Encephalitis is treatable and reversible. Most patients are left with some level of life-long cognitive deficits. Early diagnosis and aggressive treatment result in the best outcomes. “Time is Brain.”
The International Autoimmune Encephalitis Society, (IAES), is the only Family/Patient-centered organization for people with a diagnosis of 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 and relies on the expertise of its Medical Advisory Board. IAES is an established non-profit organization with a history of supporting all-inclusive services from diagnosis to recovery and the many challenges experienced in that journey.
Visit our website: www.autoimmune-encephalitis.org
Your donations help us continue our important work.
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Thank you for sharing your story. This is hellish. Apart from the mistake they made with you, the fact is that psychiatric patients are treated horribly every day. All psychiatric hospitals are hell holes.
Thank you, this is not how anyone should be treated.
About 2 months ago I asked my daughter's doctor to test her thyroid. It was so bad that she was hospitalized for 5 days. She is struggling with severe mental issues and I think she may have this condition and waiting for endocrinologist appt. She has suffered horribly with misdiagnoses after misdiagnosis.
@@BB-0804 Thyroid is fairly easy to treat, at least low thyroid. I hope she gets better, it's great she has you for support. ❤
I’m not surprised, at all, at how common delays are for patients misdiagnosed with psychiatric illness.
Thank you for sharing your story Ryan.
I am number 100 of the peeps that listened to everything. My question is: Who advocates for patients while in places like these? If it hadn't been for you mother, you would still be there. Trapped in a place you didn't belong getting so called medicine you didn't need. Reminds me of Jack Nicholson in One Flew Over the Cuckoos Nest.
So glad you are out. You are getting better. You are getting help. And that you are using your voice. Bravo.
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!
There is so much medical malpractice in this era that happens due to stereotyping. I feel like medical professionals in the future will look back at this time period shamefully
You think they will one day acquire the ability to honestly self-reflect?! Hahaha! I think you are fooling yourself.
I’d like to see you two try and run an entire clinic full of crazies, all with complex and unique underlying causes… trying to keep them all safe and from harming themselves or each other, while searching for a correct diagnosis 😂 no offense, but you’d become a crazy yourself trying to make it work
Do not forget that all the other patients are still there. Still being mistreated.
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
My 5yo daughter is going through this right now as well & it is very heartbreaking to watch especially as a mother knowing it is out of your control & all you can do is be by your child’s side & be that support system they need to get through the process! I was advised to look out for the physicians as well because they are quick to classify it as a “mental disorder”. It’s a blessing you made it through a great recovery❤️🩹 Ur story definitely helped!! Thank you for being a voice for this rare disorder💪🏾
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.
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)
A look into the world on the other side of the wall is a generous offering. Psychiatric medicine is comparatively a young science that helps many but also has many stories like your own. I will be taking boards this month to be a psychiatric provider and greatly appreciate your brave act to be vulnerable and sharing your experiences.
There are so many medical reasons for conditions psychiatry treats with psychiatry meds. As medical doctors they need to do better. Please do not be another gaslighter. Thank you
I have autoimmune encephalitis and systemic lupus, brain going crazy and hard, my lung, heart and everyting got attacked by lupus, no one believes me, I want to die, but I believe in Christ for Salvation...
i believe you. i am in heart failure, they put me inside a psych ward, thats where i am still now. i also have faith in Jesus.
Thanking for sharing your story and spreading awareness Ryan. I'm so sad that you went through this. I am a NMDA warrior and i totally relate. Congratulations to you for speaking up. Bless your mother❤ . I wish i could give you a big ((hug))
the scariest thing is it can be triggered by COVID. I've had that twice
Yesssssss wonder if it can trigger cancer too
cancer can trigger autoimmune reactions@@sherrybutts5947
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.
People with schizophrenia have to deal with psych wards often repeatedly, it frequently feels like being in jail.
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 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 😊
I was diagnosed as delusional involuntarily committed for 11 days. Because i was treating myself with antibiotics lol....turns out i had TB. Im gonna sue them bigtime
What an absolutely terrifying experience. Why are patients that present FEP not automatically given a lumbar puncture.??
yeah and all the other souls there that get mistreated and that will go on for them...
That sound scary when you are paranoid. Maybe a less invasive method is more humane.
The spinal tap is a dangerous procedure. They don’t want the liability should something go wrong. And I don’t blame them.
CYA is the number one rule of “playing at god”
Thank you for sharing. Someone I know experienced this and spent a LONG time on a secure psych ward until uni researchers discovered what was really going on and she was treated. It was too late though, she later died. I have trauma from being hospitalized for bipolar (several times) which I later discovered was the wrong diagnosis as I'm now diagnosed with Autism and ADHD. All the psych 'help' has set me back years. I'm so sorry that you went through this, its shocking to me that doctors can get things so wrong! I have major health anxiety from the years of gaslighting with both my mental and physical health yet there is still no help available on the NHS in the UK as I'm apparently too complex for the mental health team so they wont even see me these days. Probably for the best though as I dont trust anyone anymore. Sending hugs xx
Thank you so much for sharing your important story. We grieve for the loss of your friend who was misdiagnosed and lost her life. We advocate intently to see that these stories be found in our rear window. ((hugs))
I worked in the UK for 30 years as an Occupational therapist. Your story really resonates with me. I worked to develop more person centred supports for people with mental health needs in the UK. I now believe that modern processed nutrition is a main culprit for so many people being unwell in this day and age. Look to the nutrition work Professor Tim Spector and ZOE are doing in the UK & the US for mental & physical health. I have stood on the edge of the abyss and am sure that a low carb ketogenic diet based on fish, red meat and plants grown organically not processed -avoiding pro-inflammatory seed oils and packet foods, made me resilient enough to reverse my mental (anxiety) and physical illnesses (hypertension, type 2 diabetes including retinopathy, IBS and now long covid with dysautonomia including heart arrhythmias.) I’m the only sibling in my family to not develop adult onset epilepsy. My health journey is now 4.5 years old and I feel so thankful for having found the low carb international community. In 12 weeks of eating the way described by ZOE or Dr Michael Mosley is as much time as it took me to reverse 14 years of being unwell.
You are strong, your journey is inspirational, you are a truth seeker. Thank you for sharing. Kia Kaha - go strong! As we say in Aotearoa New Zealand.
Im in uk and have dissociative seizure disorder over a thousand seizures that look exactlt like the seizures this condition with have bipolar symptoms and mood swings ect but i also been losing my mind and starving myself as its the only way my brain fog and inflammatory pain leaves. I also have what was called a non cancerous cist but feels like a tumour on the tube of my right testie, been in hospital a few times for it but they either say they cant find it or am fine i have been gaslit and straight up abused by nhs staff. In my seizures i can hear them still and they talk shit about everyone their paid to look after. I dont even know how im going to get tested for this as the nhs have been so bad i have a different gp everytime i go doctors and they dont read your health issues and put you on pills that make you worse
@rodrey in my opinion the NHS is not going to help many of us unfortunately. They are only going to prescribe meds and not actually look for the causes. The drug companies control the medical system. Actually curing health problems doesn't keep the money flowing their way. It's interesting you mention starving yourself helps with the pain etc as it does for me also. I am looking into intermittent fasting as a lifestyle as I have heard it is good for its anti-inflammatory effects.
I had autoimmune encephalitis ADEM from a vaccine. I was a nurse but lost my license due to brain injury.
Babe… holy night mares… you are one tough cookie, thank god… that is the scariest story, conscious but not in control, you mind and body acting, but your not crazy, feeling trapped in your body, all the while you are a prisoner in a place that is supposed to help, not make you worse, make you better mot try to kill you… babe. Im so happy your parents stepped in, otherwise you wouldn’t be here to raise awareness..
Thats a hard story to hear, tougher to talk about but so necessary.. thank you.
And man-o-man i hope you can heal from this… xx
Thank you so much for your story, Ryann. I’m so sorry that happened to you. Much of what you said sounds very familiar. My daughter presented to a Pennsylvania hospital at age 27 with first episode of psychosis, was there for four months, transferred to a psychiatric hospital for five months. We trusted the doctors and just wanted help and answers. Ultimately, she was diagnosed with frontotemporal dementia and they suggested she be placed in a nursing home. My world went black and I yelled no! Thinking she was going to die, my husband and I brought her home and took care of her for a year before we noticed her getting better. I looked up everything she was going through, all of the stages (psychosis, catatonia, seizures, movement disorders) and found anti-NMDAR encephalitis. Everything I read was exactly what she had! I ordered all of her records and noticed the whole time she was in the hospital (nine months total, she never had a lumbar puncture, steroids (except Flonase, which probably helped), or any kind of immunotherapy. She’s been home three years now and is slowly getting better. This encephalitis was discovered way back in 2007 in Pennsylvania! There is no excuse for it to still be misdiagnosed!
😊
You complain a lot, but I don't think that's a mental illness. Maybe you would have been discharged if you said very little.
Thankyou for raising awareness🙌 💜
My heart goes out to you , ❤keep head up , your a star ⭐️please keep in touch ❤️❤️❤️🙏🏻😘
Thank you for sharing this 🙏
Thank you Thank you so much for sharing your painful story. I will share your video near and wide. 🙏❤️
The Place should be sued. It’s not right what they did to you they might do it to others . I’m so sorry you had to go through that Horrific Experience.
thanks so much for sharing. i hate how medical profeshionals treat people who have mental illnesses bc of cousre they cant have something else going on
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.
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❤
My friend just found out he has this. They found him lost and confused. And I don't know how to help.
Feel free to write. On the other side of C-PTSD and work with some people. Thanks for your story.
I was in and out 10 years.
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 ❤️❤️
CONTENT EDIT 55:18 : I had thrush in my mouth not gout. As soon as I was transferred to Med Center they immediately stopped that treatment. Raising the question, did I really have thrush?
ryann my name dee i just got out of the hosp.having encephalitis.i am still having problems drs do not know how to treat. i know your pain need help from someone.
No exercise facilities is awful for a psychiatric hospital.
I’m so glad you’re sharing your story! This happens a lot and everyone just trusts that the dr is right and knows what is wrong. They do not always and as a matter of fact it takes a lot of test to find out some times and people are put off as nothing is wrong or they are mentally ill if they can’t find it. Very true and this can kill the person because the real issue is not being addressed and only getting worse. I’m so sorry for your experience. I had several things happen similar. I have a rare disease called Dermatomyositis and I have Ehlers Danloes syndrome that I was born with and causes me a life of struggle.
I feel like patients need other patients who will take no shit about anything.
Thank You. I Hear ya ❤ memories.
I needed this. I know experiences are real. My cellies helped me.
I never want any professional advice. Peer Support is the only way to get help. O and not ativan.. they tried that on me take this... I KNEW that pink pill was not good for me. I said No.
Its never easy, nope its a horror story They put ya through.❤❤❤❤
How many times were you put into a straight jacket, strapped down in a bed, or put into a bubble room during your months stay at the Inn? ... 🤔
Edit: Right after I pressed the button to add my comment, you started talking about the bubble room! ...
Now you're talking about restraints ...
Thanks for being so honest 👌 ...
The hospital is not meant for comfort but for safety first and foremost; it is the way it is because people in the past have used all those things to attempt to harm themselves. It is difficult to be there when you aren’t feeling well, and I’m sorry you had to go through that. This is a rare disease and not something that would be considered first. I’m glad you were diagnosed correctly.
the problem is how all patients are being treated in these hellholes
Happened after my 2nd MANDATED C0vid jab
Good video
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!!!!
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 😭
I hear you
Did you sue ?????????????
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
😭🙏🏼❤️
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!
Can feel your pain Ryan. Lost my mom 20 days ago because of this shitty disease 🥹