my father has been diagnosed with this disease a week ago...We went through hell from the past six months .going to hospitals..psychiatrists..doctors told me 99 things your father doesn't have but couldn't diagnose one thing that was causing all this...Thankfully he has been now diagnosed with this and hope things to get better...
Thankfully he is better now..He was given IVIG in August 2020..He showed a bit recovery but that only got him 30 to 40 % of his original self..In January another PET Scan was done and that didn't show much of recovery in his brain.. The doctors suggested to go for another dose of IVIG ..but I changed the doctor in Feb this year..He put him on medication and from there on he has been showing tremendous recovery..He can walk on his own...talk sensibly ..and remember few things too..
Thank you so much for sharing your story. My journey was very similar. I'm getting better slowly but I have been demonstrating symptoms since 2012. I now only have 2-3 seizures a week, where it used to be 6-7 a day. I'm so happy to see more information available on this disorder.
My mother was diagnosed with encephalitis. She has episodes were she will have weird hallucinations and think things happened that didnt or she will talk about something i told her days prior and its a conversation that never happened. She says it feels so real as if it really happened. She goes through episodes every few months. She had a seizure the other night to scared the living shit out me
Sure am glad they found out about what your problem was. I am 70 years old took a J&J booster shot on 21 Dec 2021 on the 28th came down with Covid very mild got over it but started going down hill. Loss of appetite wouldn't eat at all, joint pain, sleeping 20 hours a day! Went o the VA for medical and was bounced around physical therapy. Well in early June my wife took me into Ohio St University hospital. I had lost 30lbs, hardly walk, bad balance, dizziness and didn't know where I was or what date it was and hurting all over. They thought about putting me into a nursing home, but a doctor came in and I started rambling and she said something is wrong! That resulted in a 17 day hospital stay. Well after 4 spinal taps, 3 CRts, 4 MRIs, blood test, nasal feeding tube (OUCH IT REALLY HURT) they big word here THINK it was Autoimmune Encephalitis. I am on steroids and recovering at home but with swelling of my brain and spinal column I could have died! I think what saved me was my insistence that something was not right in my joint pain. My memory really started going down hill in the end of May. I see on the net of Long Term Covid and reactions to the COVID booster and has to wonder if this was related but medical source do not want to discredit COVID Vaccinations. Anyway good luck
Similar story to me. Had the 'safe and effective' COVID jabs and ended up with AE 3 weeks later. Not a cent of compensation or even recognition from the government or the medical establishment. Glad you are doing well.
I ended up thinking about my AE today. I suppose it's never far from my thoughts. It's almost killed me twice and I'm still ill and also have trigeminal neuralgia, optic neurtis and some other fun stuff. I don't quit though because I believe science is getting closer to solving autoimunne diease, all of them. Thank you for shinning a light on this nightmarish diease. You have certainly saved lives in doing so. We must keep making doctors aware of this rare illness because, most of the time, it can be treated with positive results.
@@hotmess.maulee I got sick in 2011 and spend 11 months without any help whatsoever. Finally, by accident, as the doctor who would save me was next to the wrong blood draw lab I went to, to got 60mg a day steriods. It took about 4 months for me to start coming out of it but by then I had developed Cushing. I also go IV steriods at the local hospital but then later, when I had Cushing and the AE was improved from the steriods, I ended up in anothe hospital in which the doctors didn't believe in AE. My TPO antibodies were over 1000 and my Antithyroglobulin over 250, my form of AE was Hashimoto's Encephalitis. I started getting sick again in 2017/2018. I ended up on 100mg Prednisone a day. I got 1000mg IV in the hospital again for five days. I also have other autoimmune dieases. I have TN as well as ON as I mentioned. Spent a year not able to open my eyes and light still causes me pain. I could honestly right my own book about it. And now because of a form mix up my insurance to see my neurlogist, who was about to give me a better treatment rather than steriods, has been taken. No one knows, who hasn't beween though it, what a hellish thing this illness is as well as fighting to get the right treatments.
Watching this fully, I nearly cried. I can remember the first five weeks of hospital, over a year ago.. I was having to be restrained several times, injected by lorazapam several times. Pulling my hair out. They had too pad the bars of my bed, so it was like a padded cot; because I was banging my head so many times... Not eating or drinking or taking... Lots more :'(
@@horselover7216 can we pray? Dear God please heal what doctors can't. Please Dear Lord Jesus heal our brains and bodies. Dear God please be with us. In Jesus name we pray. Amen
Did anyone lose all ability to sleep. Did anyone suffer from body jerks at sleep onset. Did anyone lose all ability to sleep and have the jirks body jerks when trying to sleep
I jerk very often awake and while I try to sleep I jerk and wake up. I get very little sleep every night. Although I’m only 2-3 months out of the hospital… I couldn’t tell you because I don’t remember. But you are not alone!!
No autoimmune diagnosis yet but cnt sleep and no sleep puts my mind on fire then comes migraine and then spreads thru my body, head gets worse faint, cnt walk, talk, process, Lost my taste today and started throwing up my head hurt so bad. Sometimes just head and my intestines and other times my joints flare I get sores on my feet have rectal bleeding and my muscles become painful to the touch. I have nerves that are dead or dying in my back. My brain hyper focuses in mania like it can only fo 1 thing won't let go usually a task, list, design, problem to solve or a drawing my mind spins out and won't stop. I can design a whole building in my mind and draw it until my body gives es out but I cnt stop cnt sleep can't think of anything else I get sick nauseous and spreads. Usually triggered by hormones, endometriosis, travel, illness, too many nights no sleep, stress, food,... when young thought I was brilliant and passionate and genius. I cud compute huge things in my mind move them like blocks understand complex things and design and engineering in my head and a partial photogetic memory I'll obsess over something I see in memory, it's never knowing everything it says unless I divested it all but I remember certain things enough to archive it and see the page ir image it's located like cor page layout and location on page but cnt see it or know it so I look for it and I'd I cnt find it my brain fries. Us to recall much better I use notes and pictures to help save my mind the pain of searching for something manic it can't find. It trys to solve problems like construction of a building in my head won't stop until it's done if problem arise in design my brain goes back to try another solution 100 times over until its as good as it can be within whatever parameters my mind feels is critical.... it's different than when younger. Less of something I participate in ir do for work or school. My mind fixes itself on some random thought runs it's process until it cnt. I am only a passenger if I'm in a flare. It itself can cause a flare. I get sick puke migraine and so weak. I have to learn to say no to my mind even when I'm not in flare to let go cuz I cnt do it even in my normal life anymore. Cnt design without awful health
I was diagnosed with autoimmune encephalitis which gave me epilepsy I had over 176 seizures before I entered Duke University i was in a coma for 3 months and almost died 2 times.
@@heatherwanamaker8000 could be better thanks for asking. I have a neuropace device implanted on my brain. I'm also about to have another brain surgery soon They want to remove my left memory cell since it's dead and to help control my seizures.
My little guy is clinically diagnosed with this, treated yet still presenting some symptoms 15 months post. They have taken each symptom recently and given each their own diagnosis and want to treat the symptoms individually instead of further treatment for the disease. I'm still advocating and fighting for him, but I'm frustrated.
@@loveconquersall143 i am. That’s who I’m referring to. Edited my comment I can’t see neuroimmunologist or neuropsychiatrist because insurance wont pay and denies my appeal process. I need to hire a lawyer
Psychiatry fault, psychiatry must end, because serious stuff is being given a psych diagnosis, people having autoimmune encephalitis from stopping psychiatric drugs being given psychiatric diagnósis instead of testing.
Dear god. This is almost identical to my Fiance. I'm struggling so hard for them to test for AE while she's currently at a Psych-only facility. :'( Even the news thing
I think I have this. Started with a scratchy throat 27 weeks ago. Extreme tightness across the chest. 8 weeks later I felt the same pain travelling up to or coming from my head. See a neurologist tomorrow. Being told I have anxiety. Started with a couple of paranoid thoughts but I don’t have this mow the tightness brain fire is still there. I’m in Australia please what is the treatment for it. I’ve been in and out of ER in the last 17 weeks.
I just got diagnosed with this about 3-4 weeks ago I don’t really remember but this shit is extremely scary but I got off lucky compared to others I’m out of the hospital and almost back to my old self
My doctors aren’t listening to me. I’m in Australia. Started off as severe pain across the chest for a few werks then moved to the head tightness snd burning feeling
Just want to say my daughter is in hospital this very minute with this horrendous disease 15 April 2022 it all began middle of January migraines then fainting then seizures then complete confusion the psychotic episodes She destroyed the hospital room she was in,putting her hands out like a zombie and Keep clinching her fingers in and out saying she sees us in. Fast forward omg list goes on she was diagnosed with so many things dissociative seizures then schizophrenia lots eventually after a lumber puncture she was diagnosed with ant NMDA receptor encephalitis it’s so painful to watch my daughter turn in to this completely different person I am praying she recovers they thinned her blood and now on a drip to put clear liquid through her veins to fight it then they said do steroid drip we were told to the doctors knowledge she is the only one in the United Kingdom that have ever heard of having this but I don’t no but I praying so hard to get my baby back as I no she is in there we had to fight so hard to say to them she is not mad she was completely normal it just came so quickly
@smiles3500 My daughter is going through this and l have read so much on this since she was diagnosed. Initial diagnosis was physcosis..schizophrenia. I couldn't believe my daughter suddenly had a mental issue so l sought a second opinion and that's what saved her.Free to talk about it if you wish to
I think I have encephalitis but had a normal mri. Just like susanah. Posted this by the way.. This is how I feel Right now I'm in crisis zone to be honest😭 I have chronic pain everywhere that's getting worse and worse every day and every hour, also including my sickness too. I can barely type because I don't have the strength and it hurts. I can't sit up or hold my head and neck up and went from walking too not even being able to sit up etc in a short amount of time.. I have visual and auditory hallucinations that cause me to freak out I'm moody and sometimes aggressive and uncontrollable and now can't stop swearing My memory is progressively getting worse and so is my mood and mental health Frequently crying Lack off sleep but on zopiclone No meds working Incontinent with number 2 Had to have a catheter because I can't go for a wee Random shaking Dizzy Painful eyes and barely have the energy too open them. Painful when shut too Can't talk properly and forgetting what I say. Feeling unusually hot, yet normal temperature Aggitation Possible seizures Fainted several times Lathargic Loose more and more energy every day Technically mute or selectively mute. Get angry every time I talk Uncontrollable anger Not feeling safe Feel invisible Suicidal No patience Getting angry at anything and anyone Sensitive to light Amplified senses Tinitus Paranoia Neck pain Unstable in dark when I could walk Third time I can't walk and every time gets worse Intense internal itching down below Severe depression Anxiety Rare chromosome deletion called 2q37.3 Autism Anorexia Bpd (supposedly) Ahlos-danlos syndrome Neorologist did reflex tests and found my reflexes over working because my right leg suddenly started shaking. He thought it was the link between my legs and brain weren't working properly. Normal mri I'm at loss with these symptoms and I'm seriously at crisis point as I can't deal anymore. 😭 I thought I had encephalitis, but not looking like it now 😑.. They now think its a mitochondrial problem... Don't think so though :(
@@horselover7216 Did they send your blood work to mayo clinic are another facility. Those blood test takes like a month to come back. I can't tell you the names of test right now, but my son got lumbar puncture twice and they sent blood work out twice. the first one they stated that he had autoimmune encephalitis the second set is trying to figure out what's going on or what's causing the issue
Nobody needs to be unloved or to be even a child to think they lost one of only two people always in their life and especially if they are the only kid and to even ever after separation anxiety to be put through anything trauma at especially any young age ... remember me to myself speaking pointing at myself with all fingers I can say to self don't forget sobriety is tough and I remember losing too many to that and I gotta remember after all the loss to remind others feelings I can sense tonight that patwois language everything is going to be aight as long as I put the love in it you are loved first If you love you most I even got the picture here to me from me no need for money you gotta believe have faith it's about hope because repeat and" drill" is necessary because of deep dark loss bereavement being alone or PTSD can paralyze and cripple death to a live persons soul yes it's freezing here now all night because approval I her father if she decides she will ever marry I approve only if ....are you happy baby girl then are you happy my cha Cha Cha from locomotive there's so many intended left images and sketches and in the framework we gonna skip the knife and we going to stop saying zero hero unless anyone could give us great reason why Im raising my hand so a lil girls mom can hear after the Bosnia and Chernobyl issues
Her fainting stopped seizures stopped she is now totally confused comes out of it well still not her self but says why am I here and so on then you tell her 2 minutes she asks same question as she forgets this goes on all day so sad
It was missed with my husband for 2 years. We was told he must be on drugs and then dementia. He has been through hell, can’t walk talk or fead himself has had a stroke. Now in the hospital getting a plasma infusion.
My daughter kept saying I think so if you asked her anything if she wasn’t staring and not talking at all just stare like no one was there and also would say I killed a baby which she did not she said hurry open the door run we are going to die she totally trashed her room she kept trying to leave the hospital was very paranoid was seeing spenders on wall it’s awful to watch but one thing she did say at the very begging I’m scared am I going to die was so sad
Believe you me you won’t no .. she said something not right with me she knew some thing wasn’t right but now she can’t even remember why she is in hospital but your family will if you have anti NMDA receptor encephalitis
@@bluebarrrytears5886 I'm sorry I am trying to find help. The antibodies they tested for was negative but my spinal tap showed oligoclonal bands and high protein. I can't get them to do anything
Sekarang ponakanmu gimana? Putra saya umur 20 bulan juga saat ini didiagnosa autoimun ensepalitis karena radang paru2 dan otak akibat virus campak. Sampai henti nafas dan jantung. Saat ini sdh stabil namun kondisinya masih blm sadar dan didiagnosa ensepalitis autoimun
@@anoabaper3132 sekarang ponakan saya seperti anak umur 3tahun padahal umurnya sudah 7tahun. Penurunan kecerdasan. Terakhir diberikan obat gamaras. Tidak lama dari itu mengansur membaik. 4x pindah rumah sakit. Rs sari asih, Rs Umum, RS Pusat Otak, RS cipto
@Hush Money alot of people have neurological issues following vaccinations. Unfortunately, I learned the hard way. Vaccines suck!!!!! It's all about $$$$$$.
How are doing today does the episodes of the disease came back to you? I had month ago as a result of corona. im ok right now but afraid it will happen once again
@@candicethecat9819 what you eat. The food going into your body. If you are having problems change your food. There are books, a good one is , why do I still have symptoms? If my blood test says I’m normal. , Crohn’s disease, psoriasis, thyroid disease, immune disorders, arthritis, leaky gut , migraines, acne, plus 100 other things. The drug companies make pills for you to take to manage your symptoms. Not fix your problem. Netflix , has a movie called, my brain is on fire. It doesn’t explain it is the food making her have the problems. I myself I am on 2 different diets, paleo diet, and Mediterranean diet. Changing your food doesn’t mean you go hungry. And being on them I can easily eat more without putting on weight. Today I simply eat for health not for enjoyment. And I feel in my brain and my weight and body more energy. The government, insurance companies and drug companies don’t care if you are sick or not. They also don’t care if you smoke and drink alcohol. Same with the food in the stores. Myself, if I eat a street pizza, one peace my skin will have acne, hives, rashes and it will last for 3-4 days. Most Medical doctors, are only pill pushers, they are taught this in American colleges. Foreign doctors were a taught medicine, not pharmaceutical medicine, UA-cam your problem, read and change what you are doing. You can easily live a healthy life by just stop eating something that is making you sick. My xwife , change from a wonderful love person, into a paranoid, narcissist, very cruel and big victim. This happens because of the food she eats. 10 years of a great marriage, 3 more years of hell trying to help her. If you feel angry each day, it might be the food you are eating.
Incredible that you remember so much... I don't remember much from before and even less from during.
I remember some, it’s varies.
my father has been diagnosed with this disease a week ago...We went through hell from the past six months .going to hospitals..psychiatrists..doctors told me 99 things your father doesn't have but couldn't diagnose one thing that was causing all this...Thankfully he has been now diagnosed with this and hope things to get better...
Is your dad doing better?
Thankfully he is better now..He was given IVIG in August 2020..He showed a bit recovery but that only got him 30 to 40 % of his original self..In January another PET Scan was done and that didn't show much of recovery in his brain.. The doctors suggested to go for another dose of IVIG ..but I changed the doctor in Feb this year..He put him on medication and from there on he has been showing tremendous recovery..He can walk on his own...talk sensibly ..and remember few things too..
@@warisbaba7869 great to hear that.
@@kelvinmorris1991 Thankyou 👍
@@warisbaba7869 what is ivig and what medications is he on now?
Thank you so much for sharing your story. My journey was very similar. I'm getting better slowly but I have been demonstrating symptoms since 2012. I now only have 2-3 seizures a week, where it used to be 6-7 a day. I'm so happy to see more information available on this disorder.
Are you better? What treatment did you get? Sorry I trying to find out what to do
I have this too. I , too, want to know how you are doing as well
Inspire us, thx, what to do?
My mother was diagnosed with encephalitis. She has episodes were she will have weird hallucinations and think things happened that didnt or she will talk about something i told her days prior and its a conversation that never happened. She says it feels so real as if it really happened. She goes through episodes every few months. She had a seizure the other night to scared the living shit out me
Sure am glad they found out about what your problem was. I am 70 years old took a J&J booster shot on 21 Dec 2021 on the 28th came down with Covid very mild got over it but started going down hill. Loss of appetite wouldn't eat at all, joint pain, sleeping 20 hours a day! Went o the VA for medical and was bounced around physical therapy. Well in early June my wife took me into Ohio St University hospital. I had lost 30lbs, hardly walk, bad balance, dizziness and didn't know where I was or what date it was and hurting all over. They thought about putting me into a nursing home, but a doctor came in and I started rambling and she said something is wrong! That resulted in a 17 day hospital stay. Well after 4 spinal taps, 3 CRts, 4 MRIs, blood test, nasal feeding tube (OUCH IT REALLY HURT) they big word here THINK it was Autoimmune Encephalitis. I am on steroids and recovering at home but with swelling of my brain and spinal column I could have died! I think what saved me was my insistence that something was not right in my joint pain. My memory really started going down hill in the end of May. I see on the net of Long Term Covid and reactions to the COVID booster and has to wonder if this was related but medical source do not want to discredit COVID Vaccinations. Anyway good luck
Similar story to me. Had the 'safe and effective' COVID jabs and ended up with AE 3 weeks later. Not a cent of compensation or even recognition from the government or the medical establishment. Glad you are doing well.
Thank You
I ended up thinking about my AE today. I suppose it's never far from my thoughts. It's almost killed me twice and I'm still ill and also have trigeminal neuralgia, optic neurtis and some other fun stuff. I don't quit though because I believe science is getting closer to solving autoimunne diease, all of them. Thank you for shinning a light on this nightmarish diease. You have certainly saved lives in doing so. We must keep making doctors aware of this rare illness because, most of the time, it can be treated with positive results.
How long in between your initial illness and relapse?
@@hotmess.maulee I got sick in 2011 and spend 11 months without any help whatsoever. Finally, by accident, as the doctor who would save me was next to the wrong blood draw lab I went to, to got 60mg a day steriods. It took about 4 months for me to start coming out of it but by then I had developed Cushing. I also go IV steriods at the local hospital but then later, when I had Cushing and the AE was improved from the steriods, I ended up in anothe hospital in which the doctors didn't believe in AE. My TPO antibodies were over 1000 and my Antithyroglobulin over 250, my form of AE was Hashimoto's Encephalitis. I started getting sick again in 2017/2018. I ended up on 100mg Prednisone a day. I got 1000mg IV in the hospital again for five days. I also have other autoimmune dieases. I have TN as well as ON as I mentioned. Spent a year not able to open my eyes and light still causes me pain. I could honestly right my own book about it. And now because of a form mix up my insurance to see my neurlogist, who was about to give me a better treatment rather than steriods, has been taken. No one knows, who hasn't beween though it, what a hellish thing this illness is as well as fighting to get the right treatments.
Watching this fully, I nearly cried.
I can remember the first five weeks of hospital, over a year ago..
I was having to be restrained several times, injected by lorazapam several times. Pulling my hair out. They had too pad the bars of my bed, so it was like a padded cot; because I was banging my head so many times...
Not eating or drinking or taking...
Lots more :'(
How did they treat?
@@DP-mj2dw oh they haven't...
I feel like I'm just getting worse.. :(
@@horselover7216 can we pray? Dear God please heal what doctors can't. Please Dear Lord Jesus heal our brains and bodies. Dear God please be with us. In Jesus name we pray. Amen
@@DP-mj2dw yeah, I'm getting nowhere with doctors :(
@@horselover7216 have you had spinal cord tap done and tests
Did anyone lose all ability to sleep. Did anyone suffer from body jerks at sleep onset. Did anyone lose all ability to sleep and have the jirks body jerks when trying to sleep
I have
I jerk very often awake and while I try to sleep I jerk and wake up. I get very little sleep every night. Although I’m only 2-3 months out of the hospital… I couldn’t tell you because I don’t remember. But you are not alone!!
Yes. And that can be related to CSF leak too.
No autoimmune diagnosis yet but cnt sleep and no sleep puts my mind on fire then comes migraine and then spreads thru my body, head gets worse faint, cnt walk, talk, process, Lost my taste today and started throwing up my head hurt so bad. Sometimes just head and my intestines and other times my joints flare I get sores on my feet have rectal bleeding and my muscles become painful to the touch. I have nerves that are dead or dying in my back. My brain hyper focuses in mania like it can only fo 1 thing won't let go usually a task, list, design, problem to solve or a drawing my mind spins out and won't stop. I can design a whole building in my mind and draw it until my body gives es out but I cnt stop cnt sleep can't think of anything else I get sick nauseous and spreads. Usually triggered by hormones, endometriosis, travel, illness, too many nights no sleep, stress, food,... when young thought I was brilliant and passionate and genius. I cud compute huge things in my mind move them like blocks understand complex things and design and engineering in my head and a partial photogetic memory I'll obsess over something I see in memory, it's never knowing everything it says unless I divested it all but I remember certain things enough to archive it and see the page ir image it's located like cor page layout and location on page but cnt see it or know it so I look for it and I'd I cnt find it my brain fries. Us to recall much better I use notes and pictures to help save my mind the pain of searching for something manic it can't find. It trys to solve problems like construction of a building in my head won't stop until it's done if problem arise in design my brain goes back to try another solution 100 times over until its as good as it can be within whatever parameters my mind feels is critical.... it's different than when younger. Less of something I participate in ir do for work or school. My mind fixes itself on some random thought runs it's process until it cnt. I am only a passenger if I'm in a flare. It itself can cause a flare. I get sick puke migraine and so weak. I have to learn to say no to my mind even when I'm not in flare to let go cuz I cnt do it even in my normal life anymore. Cnt design without awful health
I lost ability to sleep
I was diagnosed with autoimmune encephalitis which gave me epilepsy I had over 176 seizures before I entered Duke University i was in a coma for 3 months and almost died 2 times.
How are you doing now?
@@heatherwanamaker8000 could be better thanks for asking. I have a neuropace device implanted on my brain. I'm also about to have another brain surgery soon They want to remove my left memory cell since it's dead and to help control my seizures.
@@computershutoff13666 ouch.I hope and pray it goes well for you
@@computershutoff13666so how will you remember stuff if they are going to remove your memory cell?
@@HannieX0X93 you wanna see pictures of my cell
My little guy is clinically diagnosed with this, treated yet still presenting some symptoms 15 months post. They have taken each symptom recently and given each their own diagnosis and want to treat the symptoms individually instead of further treatment for the disease. I'm still advocating and fighting for him, but I'm frustrated.
Perhaps he received the wrong type of treatment, maybe he has a different type of encephalitis than the one he was treated from
Kim how is your boy doing now? What was the treatment.
تحية للدكتور
My doctors and neurologists keep writing it off as Psychiatric because they can't find anything in the tests... :(
Maybe go and see qualified neuroradiologists...
@@loveconquersall143 i am. That’s who I’m referring to. Edited my comment
I can’t see neuroimmunologist or neuropsychiatrist because insurance wont pay and denies my appeal process. I need to hire a lawyer
@@BeanDarsame for me how are you?
Psychiatry fault, psychiatry must end, because serious stuff is being given a psych diagnosis, people having autoimmune encephalitis from stopping psychiatric drugs being given psychiatric diagnósis instead of testing.
Dear god. This is almost identical to my Fiance. I'm struggling so hard for them to test for AE while she's currently at a Psych-only facility. :'( Even the news thing
If she’s under 60 push for the tier two test. It’s worth it.
my daughter is recovering from this she has gone through hell,so have we
hi how old is your daughter now and when did this start (year) and when she made recovery and the symptoms improved
Is she better? What treatment did she get?
Is she better? What treatment did she get?
Could we talk I think I have the same problem with my xwife, she was tinker bell and now a monster and I have kids with her 5 and a 11.
@@HatBilly2008 hope you managed to get it sorted out and she's okay
9 months ago I got rhombencephalitis. I'm 80% better now. Can't find a lot of information on it. Was wondering how many people per year get it
I was diagnosed with this last October, and almost lost myself because of this.
How are you doing now?
My 14 months old girl suffering this dieses 😭😭 help someone
I think I have this. Started with a scratchy throat 27 weeks ago. Extreme tightness across the chest. 8 weeks later I felt the same pain travelling up to or coming from my head. See a neurologist tomorrow. Being told I have anxiety. Started with a couple of paranoid thoughts but I don’t have this mow the tightness brain fire is still there. I’m in Australia please what is the treatment for it. I’ve been in and out of ER in the last 17 weeks.
I just got diagnosed with this about 3-4 weeks ago I don’t really remember but this shit is extremely scary but I got off lucky compared to others I’m out of the hospital and almost back to my old self
How did you treat?
Are you now fully recovered?
@@anniecabico1599 pretty much
@@aystino224 whole buncha hospital drugs I think the one shit was called IVIG or something similar
I love her so her so much when i was sick with this disease it was the worst part of my life
brain on fire
My doctors aren’t listening to me. I’m in Australia. Started off as severe pain across the chest for a few werks then moved to the head tightness snd burning feeling
Poor girl. How brave of her. I am suffering myself, it is intense and acute, and I need to be in a UFO to be operated upon by alien physicians.
She is very pretty :)
I want.her
Just want to say my daughter is in hospital this very minute with this horrendous disease 15 April 2022 it all began middle of January migraines then fainting then seizures then complete confusion the psychotic episodes She destroyed the hospital room she was in,putting her hands out like a zombie and Keep clinching her fingers in and out saying she sees us in. Fast forward omg list goes on she was diagnosed with so many things dissociative seizures then schizophrenia lots eventually after a lumber puncture she was diagnosed with ant NMDA receptor encephalitis it’s so painful to watch my daughter turn in to this completely different person I am praying she recovers they thinned her blood and now on a drip to put clear liquid through her veins to fight it then they said do steroid drip we were told to the doctors knowledge she is the only one in the United Kingdom that have ever heard of having this but I don’t no but I praying so hard to get my baby back as I no she is in there we had to fight so hard to say to them she is not mad she was completely normal it just came so quickly
can you do a video chat with me ? I truely think I have this and no doc belives me they think I'm crazy and I know I'm dying here.
How’s you daughter now? Hope she’s well and healthy
@smiles3500 My daughter is going through this and l have read so much on this since she was diagnosed. Initial diagnosis was physcosis..schizophrenia. I couldn't believe my daughter suddenly had a mental issue so l sought a second opinion and that's what saved her.Free to talk about it if you wish to
How is your daughter now?
I remember drawing a clock for a lady. I do not remember what her title was but I do remember that I drew half a clock and I could not explain why
I was diagnosed with auto immune encephalitis. I had/have seizures but I have short term memory loss from seizures
Herb's are of good medicinal with the help of Dr Pius ua-cam.com/channels/YSy3epx2E6XJ43_8HVGW-w.html
I think I have encephalitis but had a normal mri. Just like susanah.
Posted this by the way.. This is how I feel
Right now I'm in crisis zone to be honest😭
I have chronic pain everywhere that's getting worse and worse every day and every hour, also including my sickness too.
I can barely type because I don't have the strength and it hurts.
I can't sit up or hold my head and neck up and went from walking too not even being able to sit up etc in a short amount of time..
I have visual and auditory hallucinations that cause me to freak out
I'm moody and sometimes aggressive and uncontrollable and now can't stop swearing
My memory is progressively getting worse and so is my mood and mental health
Frequently crying
Lack off sleep but on zopiclone
No meds working
Incontinent with number 2
Had to have a catheter because I can't go for a wee
Random shaking
Dizzy
Painful eyes and barely have the energy too open them. Painful when shut too
Can't talk properly and forgetting what I say.
Feeling unusually hot, yet normal temperature
Aggitation
Possible seizures
Fainted several times
Lathargic
Loose more and more energy every day
Technically mute or selectively mute. Get angry every time I talk
Uncontrollable anger
Not feeling safe
Feel invisible
Suicidal
No patience
Getting angry at anything and anyone
Sensitive to light
Amplified senses
Tinitus
Paranoia
Neck pain
Unstable in dark when I could walk
Third time I can't walk and every time gets worse
Intense internal itching down below
Severe depression
Anxiety
Rare chromosome deletion called 2q37.3
Autism
Anorexia
Bpd (supposedly)
Ahlos-danlos syndrome
Neorologist did reflex tests and found my reflexes over working because my right leg suddenly started shaking. He thought it was the link between my legs and brain weren't working properly.
Normal mri
I'm at loss with these symptoms and I'm seriously at crisis point as I can't deal anymore. 😭
I thought I had encephalitis, but not looking like it now 😑..
They now think its a mitochondrial problem... Don't think so though :(
They may have to do Lumbar puncture and more blood work
@@geo745don what other blood tests can they do. They've checked for everything autoimmune illness. Not sure if they will do a lumber puncture
@@horselover7216
Did they send your blood work to mayo clinic are another facility. Those blood test takes like a month to come back. I can't tell you the names of test right now, but my son got lumbar puncture twice and they sent blood work out twice. the first one they stated that he had autoimmune encephalitis the second set is trying to figure out what's going on or what's causing the issue
@@geo745don they sent them off to london
@@horselover7216 so you got the results back already and they said you a certain disorder
I was diagnosis and actual a recidive.
Nobody needs to be unloved or to be even a child to think they lost one of only two people always in their life and especially if they are the only kid and to even ever after separation anxiety to be put through anything trauma at especially any young age ... remember me to myself speaking pointing at myself with all fingers I can say to self don't forget sobriety is tough and I remember losing too many to that and I gotta remember after all the loss to remind others feelings I can sense tonight that patwois language everything is going to be aight as long as I put the love in it you are loved first If you love you most I even got the picture here to me from me no need for money you gotta believe have faith it's about hope because repeat and" drill" is necessary because of deep dark loss bereavement being alone or PTSD can paralyze and cripple death to a live persons soul yes it's freezing here now all night because approval I her father if she decides she will ever marry I approve only if ....are you happy baby girl then are you happy my cha Cha Cha from locomotive there's so many intended left images and sketches and in the framework we gonna skip the knife and we going to stop saying zero hero unless anyone could give us great reason why Im raising my hand so a lil girls mom can hear after the Bosnia and Chernobyl issues
Her fainting stopped seizures stopped she is now totally confused comes out of it well still not her self but says why am I here and so on then you tell her 2 minutes she asks same question as she forgets this goes on all day so sad
How do I get help for this. Emergency room does nothing for me
They're so useless. Go in again and take someone in with you to advocate for you 🙏
But, how's it diagnosed? How can this be missed!?
It was missed with my husband for 2 years. We was told he must be on drugs and then dementia. He has been through hell, can’t walk talk or fead himself has had a stroke. Now in the hospital getting a plasma infusion.
My daughter kept saying I think so if you asked her anything if she wasn’t staring and not talking at all just stare like no one was there and also would say I killed a baby which she did not she said hurry open the door run we are going to die she totally trashed her room she kept trying to leave the hospital was very paranoid was seeing spenders on wall it’s awful to watch but one thing she did say at the very begging I’m scared am I going to die was so sad
Her disease made her rich and famous . some bad things are reason to turn you into something great .
Believe you me you won’t no .. she said something not right with me she knew some thing wasn’t right but now she can’t even remember why she is in hospital but your family will if you have anti NMDA receptor encephalitis
This put me in a wheelchair, not nmda but I have something else
Did you get treatment?
Yes I got steroids
@@bluebarrrytears5886 was it iv? Did it help,?
D P yes and yes I also go ivig
@@bluebarrrytears5886 I'm sorry I am trying to find help. The antibodies they tested for was negative but my spinal tap showed oligoclonal bands and high protein. I can't get them to do anything
Halo ka,
Obat apa yang bisa menyembuhkan autoimune ensefalitis ? Ponakan aku kejang kejang terus sudah 28 hari belum sembuh
Sekarang ponakanmu gimana? Putra saya umur 20 bulan juga saat ini didiagnosa autoimun ensepalitis karena radang paru2 dan otak akibat virus campak. Sampai henti nafas dan jantung. Saat ini sdh stabil namun kondisinya masih blm sadar dan didiagnosa ensepalitis autoimun
@@anoabaper3132 sekarang ponakan saya seperti anak umur 3tahun padahal umurnya sudah 7tahun. Penurunan kecerdasan. Terakhir diberikan obat gamaras. Tidak lama dari itu mengansur membaik. 4x pindah rumah sakit. Rs sari asih, Rs Umum, RS Pusat Otak, RS cipto
@@anoabaper3132 saya doakan semoga anaknya sembuh,,, mungkin obat gamaras bisa buat penyembuhan
@@gantinama9858 saat ini untuk progress sembuhnya kira2 sudah berapa persen ya?
@@gantinama9858 pemakaian obat Gammaraas saat diresep oleh dokter siapa dan rumah sakit apa?
My brother has this
I had this shit from a flu shot
@Hush Money alot of people have neurological issues following vaccinations. Unfortunately, I learned the hard way. Vaccines suck!!!!! It's all about $$$$$$.
Oh my God!!! 😱
Are you ok now?
How are doing today does the episodes of the disease came back to you? I had month ago as a result of corona. im ok right now but afraid it will happen once again
@@shymaashyma5785 I'm doing fine now. The hardest thing to overcome was the depression and anxiety. Hang in there, you'll be fine 👍👍
@@hhhhh-bz5ue thank you ' wish you best of health and luck
Id love a date with susannah
Yeah you should see my ex-wife this turned her into a malignant narcissist when it’s left untreated
She can’t help it.
Left untreated? What was her treatment im very first place?
@@candicethecat9819 what you eat.
The food going into your body. If you are having problems change your food.
There are books, a good one is , why do I still have symptoms? If my blood test says I’m normal.
, Crohn’s disease, psoriasis, thyroid disease, immune disorders, arthritis, leaky gut , migraines, acne, plus 100 other things.
The drug companies make pills for you to take to manage your symptoms. Not fix your problem.
Netflix , has a movie called, my brain is on fire. It doesn’t explain it is the food making her have the problems.
I myself I am on 2 different diets, paleo diet, and Mediterranean diet. Changing your food doesn’t mean you go hungry.
And being on them I can easily eat more without putting on weight. Today I simply eat for health not for enjoyment.
And I feel in my brain and my weight and body more energy.
The government, insurance companies and drug companies don’t care if you are sick or not. They also don’t care if you smoke and drink alcohol.
Same with the food in the stores.
Myself, if I eat a street pizza, one peace my skin will have acne, hives, rashes and it will last for 3-4 days.
Most Medical doctors, are only pill pushers, they are taught this in American colleges.
Foreign doctors were a taught medicine, not pharmaceutical medicine, UA-cam your problem, read and change what you are doing.
You can easily live a healthy life by just stop eating something that is making you sick.
My xwife , change from a wonderful love person, into a paranoid, narcissist, very cruel and big victim. This happens because of the food she eats.
10 years of a great marriage, 3 more years of hell trying to help her.
If you feel angry each day, it might be the food you are eating.