Autoimmune encephalitis by unknown antibody.Has anyone in this community ever had this diagnosis?

[Bolinha99]

Autoimmune encephalitis by unknown antibody.

Has anyone in this community ever had this diagnosis? My sister was diagnosed like this. It was two months in an induced coma and another four months in an infirmary. We are currently at home, but she is speechless and walking. Because of the epidemic, the rehabilitation hospital thought it best not to be followed up now. I feel lonely. Doctors don't seem to know what to do. I am afraid that the lack of rehabilitation at that moment will hinder it. She is accompanied by a physiotherapist at home and her movements are already improved. I realize that most cases are NMDA encephalitis. But I would like to hear reports from different people, especially strangers.

[alpappy]

I Had similar four years ago and it does get better but I am still left with many neurological defects but hang in and give it time I suppose it all depends on the treatment I was diagnosed very quickly and had retuximab electrophoresis steroids the lot I live in New Zealand

[Bolinha99 in reply to alpappy]

Thank you for the strength. She made use of rituximab. How long have you been using it?

[alpappy in reply to Bolinha99]

I am off all encephalitis drugs now Just try to keep well do some walking every day No Alcohol and that seems to mostly work but Ijust had a flu jab and was not ok for a few days so the damage is permanent ....but can mostly deal with it

[Dublinboy78]

My daughter is in remission from AE caused by an unidentified antibody. She spent 4 months in hospital but has made a remarkable recovery considering. What treatment was your sister given?

[Bolinha99 in reply to Dublinboy78]

When he was in the ICU, he did plasmaspheresis, rituximab. She had many seizures including in a coma. However, after leaving the ICU, he has only been using anticonvulsants. It's been six months since the last dose of rituximab

[Archer6]

I'm sorry to hear that your sister is so ill. I am 2 years from being diagnosed with autoimmune encephalitis. My antibody was unknown until it was sent to the Mayo Clinic where they identified it since it had only been discovered a year or two earlier. Apparently new antibodies are continually being discovered/identified. From what I understand from just being a patient is that the treatment for AE is pretty much the same. Your sister will continue to improve and it may take a while. I found it very helpful to have my family supporting me, encouraging me, and pointing out any type of improvement I showed. I often felt like I was very very far away. I told that to my neurologist and he told me "yes! you were far away!".

I had months of speech therapy and physical therapy, but what helped me the most was the support and encouragement of my family helping me get back. Hope this helps.

[Bolinha99 in reply to Archer6]

Thank you! Where is the Mayo Clinic? Which country?

[Archer6 in reply to Bolinha99]

The Mayo Clinic is based in the US, but it has branches worldwide. I never actually went to the Mayo Clinic, my neurologist sent samples from me including cells from a brain biopsy (ouch!) to the Mayo Clinic where they did the testing and sent him back the results. Hope this helps.

[SurferGirl1]

I was like this - mute, unresponsive, all but shut down and officially catatonic from my autoimmune encephalitis. No antibody has been identified. Three weeks of ECT three times daily is what is what lifted me out my catatonia, while I was on immunosuppressants. Those treatments saved my life!