My 4 year old daughter was perfectly healthy,She was diagnosed with auto immune encephalitis.She was in a coma for 2 weeks and hospitalized for 2 months,From a perfectly healthy child it was traumatic to see my child as a vegetable lying on that hospital bed taking 15 types of medication including steroids.She was affected on the motor part of the brain,So she lost her ability to speak,Walk and eat.My daughter was robbed by this horrible disease…The battle and coping with this is illness is traumatic and painful.With rehab and medication I pray she will regain her abilities and be able to control her aftermath sequela of Epilepsy…Seizures through the days.Buts please stay brave and strong.

I was diagnosed with Autoimmune Encephalitis in 2001 at age 13. I was only given high dose Prednisone therapy Therapy short term. I have had severe psychiatric symptoms since my AE. There has been a huge increase in knowledge about about AE since then. It seems the majority are kept on immunosuppressive treatment longterm. And I wish a doctor would let me try immunosuppressive treatment again.

Thank you for your story. It is a source of encouragement to me. In March 2020 I was hit with a horrible headache like nothing I’d ever had before. And I do have a history of migraines. This felt very different from my migraines. It felt like my brain was swollen and pressing against my skull. I liked the feeling to the “ brain freeze” one gets when eating something cold too fast. Multiplied 10x. The pain increased relentlessly until I finally went for an MRI in June. I am allergic to the contrast dye so without that my tests were said to be inconclusive. I reverie do no help other than pain meds. Which I couldn’t take. A couple of months later I was diagnosed with encephalitis by a Dr, based on my symptoms. Again no treatment was offered. I was told healing could take up to 2 years. To rest as much as possible. For the next 10 months I was mostly bed bound, motionless for fear something fragile in my brain would rupture. I was unable to take a deep breath, , cough, roll over without frightening pain in my brain and a sensation that it was going to implode. Every night I feared going to sleep, terrified I would die. I developed chronic insomnia even though I was in a state of groggy half consciousness all day. . It was the most painful, lonely, and frightening experience I’ve ever had. Now nearly two years later, I still have strange sensations and frequent pain in my head. I’m never free of it. My brain is very fatigued and I can’t pursue things I used to that require mental energy. Many symptoms such as trouble with word finding, difficulty in noisy or bright places, fragile balance , are like yours. I also have a different kind of mental state from before. A heavy apathy has set in which is unlike me. This is very upsetting. Ive had ME/ CFS since 1985 so fatigue has been a constant for me long before the encephalitis but now it is even more constant with long periods needed for any energy accumulation. I spend much time exhausted, lying down between short bits of activity. I’m 72 years old and wondering if I’ll ever fully recover now. I have felt very alone during the months isolated in bed, but reading accounts like this have saved my sanity. Thank you again. May your healing be complete.

I have Multiple Sclerosis, but this diagnosis is also on my chart, they’re both so similar. Hang in there and hopefully you have a great support system!! Much love

Thank you so much for sharing your experience from this disease. Your recovery and healing continues positive. ❤️

Th ask you for sharing your story. It’s good to know there are treatments now.

Thank you for sharing your beautiful story

I am so happy for your story I thought I was alone going through this

Amazing job Lisa! Walk on!

Hi glad you came forward with you situation. I was hit with CNS Vasculitis which is very rare only two in a million get it, no cure just attempts to keep it in remission. While I was in the hospital just about every possibility was heard by me, brain cancer, MS, you make it took 3 months to have a Brain biopsy that diagnosed CNS Vasculitis.

Thanks for the amazing sharing🙏🙏🙏

Thank you for sharing. I am 40 years old, I have been struggling with depression, anxiety, back pain, chronic fatigue since my teen years. So, my fatigue is getting worse, and I don't know anymore what to do, doctors just want to shut me down with pills for depression. I do not believe this is just depression. I think there is more. Not only that, but I want to get better from the debilitating fatigue. I want to do things, I love going hiking, I am in college again, and I am frustrated because I am so tired all the time.

Very important and touching story Best wishes

I am an encephalitis patients I also got epilepsy I got this all from bacterial meningitis when I was 10

Thank you. I’ve been told that I have encephalitis but can’t prove it. I had a haplo bone marrow transplant, my son my donor. I had a seizure and have no memory of all that happened. Tons of a tests, two lumbar punctures , mri’s, ect. But everything shows normal. The specialists said they are calling it encephalitis because they don’t know what else. I’m currently in The Ottawa hospital in rehab trying to walk again. So much of what you said it’s me. Right down to fast movements of people and things. It’s all been brutal. Rituximab is something I will ask about.

Thank you so much Lisa for sharing your story. Can you share what type of physical therapy treats this illness pls. 🙏

Thank you for your story! My 15 yo son has AE. It’s post infectious after having roseola (HHV6) when he was 13 months old. Now the virus gets reactivated from any number of things and he will flare. He has many psychiatric symptoms. Do you carry around a card or anything to notify strangers if you have an attack?

my dad is diagnosed with this disease in july 25 2020. he received ivig treatment..its September..though he can walk ..but cant remember what happened 2 minutes ago ..like what he ate ..etc..how long is it gonna take for him to recover ..is there further need of ivig transfusion...

Yeah I was also infected by encephalitis at the age of 6 month. I think it effect me as in the age of 19. is my guess correct or not.if it is correct how can I develop brain now.

I am an encephalitis patient in HK. There is no such rehab. organization in HK which I find very helpful to recovering patients. Thanks for sharing the stories. I had the disease in May 2018 and my memory was affected. Luckily I am recovering relatively well which I can remember things now. Anyway, it's very helpful for patients to share their stories as 'normal healthy' people dont share we've been through.

🙏❤️🙏