It’s shocking to think how ignorant so many MDs are about this.. How many people have ended up numbed up on psychiatric drugs for years or misdiagnosed simply due to doctors being ignorant about this!!!
I have been diagnosed with this. I had a seizure some time ago. I went from being relatively independent to being dependent on family. It is tough. Thanks to the Encephalitis Society for posting this.
I had Viral Encephalitis back in 2015 My life changed forever learning about this disease. I had never heard of it before. My life was saved and I was living a normal life till recently. I am presently in hospital at the moment being treated for the Autoimmune version now. I'm getting Steroids today. Hopefully all will go well.
I'm not sure where research stands on Hashimoto's Encephalopathy/ Encephalitis, but I am pretty sure that's what happened to me. I was a highly functioning adult- computer programmer and went downhill fast, couldn't drive, couldn't walk right, talk right, had slurred speech, hives all over my body, severe headaches and more, yet they told me I was depressed and had severe anxiety. Was put on treatment with psychiatric drugs and an offer to be a patient in a psych ward. And this was at Johns Hopkins. 😳🤦♀️🤷 As the TPO antibodies have fallen almost to none my mind is back to normal and so is my body. However my life has been completely ruined because of it. I am still in shock at what happened to me and the lack of interest in figuring out what was wrong with me. I wish someone would spread awareness to all physicians. Especially pcps and psychiatrists.
We are so sorry to hear of your experiences and your illness, coconut shells. We have some information on Hashimoto's Encephalopathy here: www.encephalitis.info/hashimotos-encephalopathy. Our support services are here for you any time you have a question - you can reach out to us at support@encephalitis.info, or call us on +44(0)1653699599. You are not alone - we are here for you.
How weird that I came upon your comment. I too have Hashimoto's Disease and suffer from migranes and aches and pains. Right now I go to a psychiatric group 3x a week at a hospital. That was the "cure" I was given.
Oh this breaks my heart . My son is going through the same thing including now the slurred speech.. I am so scared for him because he too is being pumped drugs instead of looking at the whole picture . He too abruptly woke up with an altered mind , 8 months later he is getting worse and I can’t find a doctor to help us .
Thank you for posting this. My sister is in the hospital and this is one of their differential diagnosis. Seems to fit. This video helped my family a lot. We don’t know her outcome yet. But this made this clearer.
We are so sorry to hear of your sister's illness Becky. You are not alone, we are here for you and your family. Please don't hesitate to reach out to our support team at support@encephalitis.info any time you have a question.
Thank you. My daughter has this. She was misdiagnosed as Autistic and tourettes for 5 years. A steroid injection for croup made all her symptoms go away as fast as they started... we were referred to an immunologist and she was diagnosed with PANS.
Hi Aub, thank you for your comment and we are so sorry to hear of your daughter's PANS. If you are in need of any support, the PANDAS network may be able to help you: pandasnetwork.org/support-groups/
My mom has this and it stems from her alcoholism. Her liver failure caused her immune system to weaken and in turn an infection upon her brain. She won't wake up. I fear the worst. I wish I had made peace with her. She had seizures and ended up in the hospital. Then was well after rehabilitation for about a week. She left me a beautiful message with good intentions and wishes to see me. Then she ended up back in the hospital. She has not woken up since. I fear the worst. I am scared. I am very sad. I do not like to see her laying there alone like that. I live far away. I hope when she wakes up she remembers me. I love you Mommy.
Thank you for reaching out to us Erin, and I am so sorry to hear of your mom's autoimmune encephalitis. Please get in touch with our support team on +(0)1653699599 for some support. You are not alone - we are here for you.
I was diagnosed with Autoimmune Encephalitis last year, in August. My life has not been the same since. I was having two seizures per day, behaving as I was completely out of my mind. I wasn't me, and I do not have many memories. I was lucky to have been diagnosed quickly, within a month. I started the treatment with steroids, immunosuppressors, anti seizure medication, and a bunch of other stuff to mitigate side effects... Thanks for posting this.
My husband was recently diagnosed with this after 6 months of misdiagnosis. The neurological community should be more aware of the signs and be trained to test for this early on when someone presents with seizures and memory loss/confusion after being perfectly normal. This illness is life changing and it’s amazing how hard it is to find a neurologist who is trained in treating it.
I love your explanation I was just diagnosed with autoimmune encephalopathy and was looking for information since I don't know much about this condition ,I feel I understand it now .It was so easy to follow your explanation even with all my cognitive issues .Thankyou !! Cris from Texas
Thank you so much for your kind comment, Criselda, and we are so sorry to hear of your autoimmune encephalopathy. We are here for you - if ever you need any support, information or advice please don't hesitate to get in touch with our support team on +44(0)1653699599, or support@encephalitis.info
My heart is broken. My sister is in the hospital suffering from this and in ICU. And nothing Seems to help. Seconded case in our state. Since 2019. Thank you for posting
Dr.Venkatesan, thank you so much for this information. I wish I had seen this earlier , I believe that my son has this but no one will help us . He had 3 biomarkers but the doctors in my state don’t feel the need to treat his abrupt onset of multiple symptoms.
Thank you for your comment, Pea Nut, we are so sorry to hear of your son's recent illness. You are not alone - we are here for you and your son. Please call +44(0)1653699599, or email support@encephalitis.info to speak to a member of our support team.
My son was diagnosed with autoimmune encephalitis.He was been given high dose of steroids and Immunoglobulin.He is fine with good cognitive and physical function.However he still gets brief seizures of 30-40 seconds occasionally.It has been slightly over 3 years now since he was discharged from hospital.He is still on oral antiepileptic drugs.May I know when will he be seizure free.
my daughter is going through since last 3 years, now she is five years old but still she is not able to sit properly or walk or stand.doctors and her physiotherapist dont give us any hope but still i am working on it and my moral is high. one day she will be able to walk I.A
Thank you for your kind words Shreyasee, we so are glad the video was helpful! We are here for you - please don't hesitate to get in touch with support@encephalitis.info any time you need some support.
Hello Shreyasee, I had a similar experience two weeks ago and was diagnosed with Autoimmune Encephalitis. Happy to hear about your recovery. I feel that I'm regaining my strength every day and in a much better position. I was hoping to hear from you on your recovery and how it went - how much time it took for a complete recovery, whether you had to instil any lifestyle changes and till when, whether you changed your diet, what medications/steroids you took and for how much time. Hearing back from you would mean a lot to me :)
My son is in relapse of an AE diagnosis but the hospital doesn't want to treat him because they are concerned about liability. IVIG seemed to get him mostly recovered for 2 years. Now he's steadily declining in cognition and regulation and more and he gets put off.
Thank you for your comment, 핻알런 , we are so sorry to hear of your son's recent relapse. You are not alone - we are here for you and your son. Please call +44(0)1653699599, or email support@encephalitis.info to speak to a member of our support team.
I had encephalitis 6 months ago due to Corona infection and i am already an FMF patient . Thank God it was cured and left hospital after a week. The symptoms for me were involuntary sleep follwed by change in bahaviour it all happened in one day. Now for two weeks i started to sleep for long hours almost the whole day even with attempt to wake up, but i am fully concious i took 3 cortisone injections (dexa methasone) then iam back to normal, ,i am afraid this is the beginning of another episode of that disease
Thank you for sharing your experiences with us Shymaa, we are so sorry to hear of your encephalitis 6 months ago. If you are concerned about new or returning symptoms please seek medical attention.
Sir i am dr.vinayak patil. My 5 year old daughter has autoimmune encephalitis and is in the hospital since 15 days. Ivig inj, inj methylprednisolone, inj levipil(Levetiracetam), inj Fosphenytoin (neofost), inj Gardenal (Phenobarbitone), inj Dexmedetomidine all started on drip. still did not get much result, seizures came 3/4 times a day then in drs given Midazolam drip and put on the ventilator. And it helped in reducing the spikes in the brain . Then some seizures went away. After applying midazolam drip after 2 days midazolam inj were stopped. And removed the ventilator. But now after reducing midazolam, seizures are still occurring in less quantity. Now there are 3 anti seizures drugs along with inj Lacosamide and tab Tapomac. There is still some abnormality in the eeg Feedback
Thank you for watching, and for your comment Dipanwita. Please get in touch with support@encephalitis.info, or call +44(0)1653699599 for support and information about encephalitis.
Thank you for your question, Ruzel. Our support@encephalitis.info email provides support to anyone affected by encephalitis, anywhere in the world. You are not alone - we are here for you. Please don't hesitate to reach out to us any time you have a question.
How long does the blood test for autoimmune encephalitis w/ Refl to titer and line blot serum take to perform? I’ve been waiting for results for 2 1/2 weeks now. Shows as pending in my lab portal.
Thank you for your question sarahcornwell841. You can learn more about the testing process here: ua-cam.com/video/ceVM6Om5pwo/v-deo.html. Not every hospital can perform autoantibody tests, often samples are sent to specialist testing centres meaning it can take weeks to receive the results.
My cousin brother, who is 12 years old is diagnosed of it and is currently in icu. Ivig is suggested, but holding off due to severe blood pressure. Is there anything that this community can help with at this point or would need more details that would help you suggest anything. He is currently in a hospital in India. The comments here are very positive and hopeful. Please let me know if there is anything that helps us right now
Thank you for your comment Bijesh, and I am so sorry to hear of your cousin's diagnosis of encephalitis. You are not alone - we are here for you. This page on our website is a good introduction to being at the bedside of a loved one in the hospital with encephalitis: www.encephalitis.info/Pages/Category/after-effects-of-encephalitis. Please don't hesitate to send us any questions you have, to support@encephalitis.info, or call us on +44(0)16536995999.
I had an ovarian teratoma which was removed last year due to pain. I been struggling with brain fog and cognitive decline, dizzy, tachy/bradychardia, blood pressure changes, blurry/double vision, tinnitus, fluid draining from both ears, strong headaches, weakness, muscle spasm and much more for about five years but I am getting worse after the removal of the teratoma and ovary. I can hear how my brain is being degrated, there's like a sizzling sound at the base of my brain, I hear my neck clicking and sort of jellow sound in the brain when I walk. I can barely function, lost my job a year ago, I am completely isolated and anti social now because I struggle to communicate and socialize. I fear that this is killing me slowly and no one believes how bad it's getting. I was prescribed lorazepam a few months ago and tried it for 4 days but I wasn't myself, I even scheduled an interview and don't remember how I got there, who I met with, what I said or where it was.. my uncle said I got ready for the interview and left my daughter with him, my husband said I spent $100 on jewrlery that I would never wear and I don't remember, I was not myself and I cannot remember anything about those 4 days so I stopped it right away. Can it be NMDAR encephalitis. Where do I even start? Who treats it? I am in California. Any info will greatley help. TIA🙏
Thank you for your comment, Alejandra, we are so sorry to hear of your recent health problems. Please reach out to our support team at support@encephalitis.info, they will be happy to answer your questions.
It’s shocking to think how ignorant so many MDs are about this.. How many people have ended up numbed up on psychiatric drugs for years or misdiagnosed simply due to doctors being ignorant about this!!!
I have been diagnosed with this. I had a seizure some time ago. I went from being relatively independent to being dependent on family. It is tough. Thanks to the Encephalitis Society for posting this.
How are you now?
I too have recently been diagnosed with Encephalitis this has been very informative.
I had Anti NMDA encephalitis, 11 years ago when I was only 16 years old. This video is a gem. Thank you.
I had Viral Encephalitis back in 2015 My life changed forever learning about this disease. I had never heard of it before. My life was saved and I was living a normal life till recently. I am presently in hospital at the moment being treated for the Autoimmune version now. I'm getting Steroids today. Hopefully all will go well.
How are you now?
I'm not sure where research stands on Hashimoto's Encephalopathy/ Encephalitis, but I am pretty sure that's what happened to me.
I was a highly functioning adult- computer programmer and went downhill fast, couldn't drive, couldn't walk right, talk right, had slurred speech, hives all over my body, severe headaches and more, yet they told me I was depressed and had severe anxiety. Was put on treatment with psychiatric drugs and an offer to be a patient in a psych ward. And this was at Johns Hopkins. 😳🤦♀️🤷
As the TPO antibodies have fallen almost to none my mind is back to normal and so is my body. However my life has been completely ruined because of it.
I am still in shock at what happened to me and the lack of interest in figuring out what was wrong with me.
I wish someone would spread awareness to all physicians. Especially pcps and psychiatrists.
We are so sorry to hear of your experiences and your illness, coconut shells. We have some information on Hashimoto's Encephalopathy here: www.encephalitis.info/hashimotos-encephalopathy. Our support services are here for you any time you have a question - you can reach out to us at support@encephalitis.info, or call us on +44(0)1653699599. You are not alone - we are here for you.
I don't think hives is a symptom of Hashimoto's Encephalopathy.
How weird that I came upon your comment. I too have Hashimoto's Disease and suffer from migranes and aches and pains. Right now I go to a psychiatric group 3x a week at a hospital. That was the "cure" I was given.
@@christinemarie9677 I was diagnosed with Hashimoto’s encephalopathy when I was 12. I think I’m relapsing
Oh this breaks my heart . My son is going through the same thing including now the slurred speech.. I am so scared for him because he too is being pumped drugs instead of looking at the whole picture . He too abruptly woke up with an altered mind , 8 months later he is getting worse and I can’t find a doctor to help us .
Thank you for posting this. My sister is in the hospital and this is one of their differential diagnosis. Seems to fit. This video helped my family a lot. We don’t know her outcome yet. But this made this clearer.
We are so sorry to hear of your sister's illness Becky. You are not alone, we are here for you and your family. Please don't hesitate to reach out to our support team at support@encephalitis.info any time you have a question.
Thank you. My daughter has this. She was misdiagnosed as Autistic and tourettes for 5 years. A steroid injection for croup made all her symptoms go away as fast as they started... we were referred to an immunologist and she was diagnosed with PANS.
Hi Aub, thank you for your comment and we are so sorry to hear of your daughter's PANS. If you are in need of any support, the PANDAS network may be able to help you: pandasnetwork.org/support-groups/
Aub Barton interested in what you had to do to convince your daughters dr to investigate. Thanks.
Did your daughter speak or was non verbal?
My mom has this and it stems from her alcoholism. Her liver failure caused her immune system to weaken and in turn an infection upon her brain. She won't wake up. I fear the worst. I wish I had made peace with her. She had seizures and ended up in the hospital. Then was well after rehabilitation for about a week. She left me a beautiful message with good intentions and wishes to see me. Then she ended up back in the hospital. She has not woken up since. I fear the worst. I am scared. I am very sad. I do not like to see her laying there alone like that. I live far away. I hope when she wakes up she remembers me. I love you Mommy.
Thank you for reaching out to us Erin, and I am so sorry to hear of your mom's autoimmune encephalitis. Please get in touch with our support team on +(0)1653699599 for some support. You are not alone - we are here for you.
Erin Collins, so sorry for your situation! hope you can find some peace, she knows you love her.
I do sincerely hope that you and your mom are doing ok now
I was diagnosed with Autoimmune Encephalitis last year, in August. My life has not been the same since. I was having two seizures per day, behaving as I was completely out of my mind. I wasn't me, and I do not have many memories. I was lucky to have been diagnosed quickly, within a month. I started the treatment with steroids, immunosuppressors, anti seizure medication, and a bunch of other stuff to mitigate side effects... Thanks for posting this.
Thank you for sharing your experience. Our website has lots of information on how we may be able to support you, if required.
My husband was recently diagnosed with this after 6 months of misdiagnosis. The neurological community should be more aware of the signs and be trained to test for this early on when someone presents with seizures and memory loss/confusion after being perfectly normal. This illness is life changing and it’s amazing how hard it is to find a neurologist who is trained in treating it.
Please do get in touch if you need any support.
I love your explanation I was just diagnosed with autoimmune encephalopathy and was looking for information since I don't know much about this condition ,I feel I understand it now .It was so easy to follow your explanation even with all my cognitive issues .Thankyou !! Cris from Texas
Thank you so much for your kind comment, Criselda, and we are so sorry to hear of your autoimmune encephalopathy. We are here for you - if ever you need any support, information or advice please don't hesitate to get in touch with our support team on +44(0)1653699599, or support@encephalitis.info
My heart is broken. My sister is in the hospital suffering from this and in ICU. And nothing Seems to help. Seconded case in our state. Since 2019. Thank you for posting
Hey, how is she now?
Dr.Venkatesan, thank you so much for this information. I wish I had seen this earlier , I believe that my son has this but no one will help us . He had 3 biomarkers but the doctors in my state don’t feel the need to treat his abrupt onset of multiple symptoms.
Thank you for your comment, Pea Nut, we are so sorry to hear of your son's recent illness. You are not alone - we are here for you and your son. Please call +44(0)1653699599, or email support@encephalitis.info to speak to a member of our support team.
Schizophrenia is very similar to encephalitis in a lot of ways. People don't realize how many neurological problems are associated with schizophrenia.
Are the hallucinations different between this and schizophrenia? How can we differentiate between the two?
Excellent video! Thanks for sharing.
Thank you for watching, ABA Made Easy!
My son was diagnosed with autoimmune encephalitis.He was been given high dose of steroids and Immunoglobulin.He is fine with good cognitive and physical function.However he still gets brief seizures of 30-40 seconds occasionally.It has been slightly over 3 years now since he was discharged from hospital.He is still on oral antiepileptic drugs.May I know when will he be seizure free.
How is he now?
Please tell us there is hope that he will be seizure free, off meds?
my daughter is going through since last 3 years, now she is five years old but still she is not able to sit properly or walk or stand.doctors and her physiotherapist dont give us any hope but still i am working on it and my moral is high. one day she will be able to walk I.A
Very informative and can completely relate to it from my past experience
Thank you for your kind words Shreyasee, we so are glad the video was helpful! We are here for you - please don't hesitate to get in touch with support@encephalitis.info any time you need some support.
Hello Shreyasee, I had a similar experience two weeks ago and was diagnosed with Autoimmune Encephalitis. Happy to hear about your recovery. I feel that I'm regaining my strength every day and in a much better position. I was hoping to hear from you on your recovery and how it went - how much time it took for a complete recovery, whether you had to instil any lifestyle changes and till when, whether you changed your diet, what medications/steroids you took and for how much time. Hearing back from you would mean a lot to me :)
Plz help us how to overcome
My son is in relapse of an AE diagnosis but the hospital doesn't want to treat him because they are concerned about liability. IVIG seemed to get him mostly recovered for 2 years. Now he's steadily declining in cognition and regulation and more and he gets put off.
Thank you for your comment, 핻알런 , we are so sorry to hear of your son's recent relapse. You are not alone - we are here for you and your son. Please call +44(0)1653699599, or email support@encephalitis.info to speak to a member of our support team.
God bless him.
I had encephalitis 6 months ago due to Corona infection and i am already an FMF patient . Thank God it was cured and left hospital after a week. The symptoms for me were involuntary sleep follwed by change in bahaviour it all happened in one day. Now for two weeks i started to sleep for long hours almost the whole day even with attempt to wake up, but i am fully concious i took 3 cortisone injections (dexa methasone) then iam back to normal, ,i am afraid this is the beginning of another episode of that disease
Thank you for sharing your experiences with us Shymaa, we are so sorry to hear of your encephalitis 6 months ago. If you are concerned about new or returning symptoms please seek medical attention.
There is also now Actemra that is used in AE. Is this med used much these days for AE?
I had HSV1 infectious encephalitis .
Thank you sir for yor clear explanation .
Thank you for watching, Kalyani!
Sir i am dr.vinayak patil. My 5 year old daughter has autoimmune encephalitis and is in the hospital since 15 days. Ivig inj, inj methylprednisolone, inj levipil(Levetiracetam), inj Fosphenytoin (neofost), inj Gardenal (Phenobarbitone), inj Dexmedetomidine all started on drip. still did not get much result, seizures came 3/4 times a day then in drs given Midazolam drip and put on the ventilator. And it helped in reducing the spikes in the brain . Then some seizures went away. After applying midazolam drip after 2 days midazolam inj were stopped. And removed the ventilator. But now after reducing midazolam, seizures are still occurring in less quantity. Now there are 3 anti seizures drugs along with inj Lacosamide and tab Tapomac. There is still some abnormality in the eeg
Feedback
Hi, please do get in touch with us to see if we can support you in anyway. We have a phone line or email support which can be seen on our website.
Excrllent
Thank you for watching, Ali Ali!
What is best place to treat this disease in india?
Thank you for watching, and for your comment Dipanwita. Please get in touch with support@encephalitis.info, or call +44(0)1653699599 for support and information about encephalitis.
How does diet, mindset and other lifestyle practices affect autoimmune encephalitis recovery and prognosis?
Thank you for your question Lori, we have guidelines for recovery from encephalitis available here: www.encephalitis.info/guidelines-for-recovery
I had Adem as a child
Is there a support group in Germany? I could not find one. Patients in Germany reading this please comment. (:
Hi, we have online support groups which you may be interested in. Please visit our website for more information.
The e mail support is for any country? I am writing from Peru.
Thank you for your question, Ruzel. Our support@encephalitis.info email provides support to anyone affected by encephalitis, anywhere in the world. You are not alone - we are here for you. Please don't hesitate to reach out to us any time you have a question.
Is chronic immunosuppressive ever required?
How long does the blood test for autoimmune encephalitis w/ Refl to titer and line blot serum take to perform? I’ve been waiting for results for 2 1/2 weeks now. Shows as pending in my lab portal.
Thank you for your question sarahcornwell841. You can learn more about the testing process here: ua-cam.com/video/ceVM6Om5pwo/v-deo.html. Not every hospital can perform autoantibody tests, often samples are sent to specialist testing centres meaning it can take weeks to receive the results.
My cousin brother, who is 12 years old is diagnosed of it and is currently in icu. Ivig is suggested, but holding off due to severe blood pressure. Is there anything that this community can help with at this point or would need more details that would help you suggest anything. He is currently in a hospital in India. The comments here are very positive and hopeful. Please let me know if there is anything that helps us right now
Thank you for your comment Bijesh, and I am so sorry to hear of your cousin's diagnosis of encephalitis. You are not alone - we are here for you. This page on our website is a good introduction to being at the bedside of a loved one in the hospital with encephalitis: www.encephalitis.info/Pages/Category/after-effects-of-encephalitis. Please don't hesitate to send us any questions you have, to support@encephalitis.info, or call us on +44(0)16536995999.
The Encephalitis Society thank you so much!
hey man my wife is in the hospital and I'm wondering, how your cousins brother is doing? and may I ask how was recovery?
i hope he is better now.
I had an ovarian teratoma which was removed last year due to pain. I been struggling with brain fog and cognitive decline, dizzy, tachy/bradychardia, blood pressure changes, blurry/double vision, tinnitus, fluid draining from both ears, strong headaches, weakness, muscle spasm and much more for about five years but I am getting worse after the removal of the teratoma and ovary. I can hear how my brain is being degrated, there's like a sizzling sound at the base of my brain, I hear my neck clicking and sort of jellow sound in the brain when I walk. I can barely function, lost my job a year ago, I am completely isolated and anti social now because I struggle to communicate and socialize. I fear that this is killing me slowly and no one believes how bad it's getting. I was prescribed lorazepam a few months ago and tried it for 4 days but I wasn't myself, I even scheduled an interview and don't remember how I got there, who I met with, what I said or where it was.. my uncle said I got ready for the interview and left my daughter with him, my husband said I spent $100 on jewrlery that I would never wear and I don't remember, I was not myself and I cannot remember anything about those 4 days so I stopped it right away. Can it be NMDAR encephalitis. Where do I even start? Who treats it? I am in California. Any info will greatley help. TIA🙏
Thank you for your comment, Alejandra, we are so sorry to hear of your recent health problems. Please reach out to our support team at support@encephalitis.info, they will be happy to answer your questions.
How are you now alijandra