Limbic Autoimmune Encephalitis. Anyone out there who is ?

Hello @dach, There are other members who have mentioned they have limbic autoimmune encephalitis but I'm not sure if any are still following Connect. You might want to scan through their comments while you wait for members to respond - https://connect.mayoclinic.org/search/?search=Limbic+Autoimmune+Encephalitis.

The Encephalitis International Non-Profit has a website with a lot of information if you haven't already seen it:
https://www.encephalitis.info/. They also have the following document you can print out that might be helpful:
-- Managing memory problems after encephalitis: https://encephalitis.info/wp-content/uploads/2023/11/FS026V4-Managing-memory-problems.pdf.

John
Thanks so much for the info. I wasn’t aware of any of the sites. Can’t thank you enough.
David

Hi Dach! I've had autoimmune Limbic encephalitis -LGI1 since Dec 2017. Lost a lot of my memory and some has come back. Some things I didn't remember prior to my initial facial brachial dystonic seizures returned also (surprised). I also went through the gamut of other types of seizures that were caused by the initial ones. Things got better in time for me, although it's taken a while. I've since been diagnosed with other Autoimmune disorders so it's been an interesting walk in life. What I can say that I'm positive that helped me is to get as much sleep as your body tells you. If you think you feel like taking a nap....go ahead and take it. Sleep helps the brain to heal. Hang in there Warrior!

Hi Valm,
Thanks for the reply, it looks like we were both diagnosed with the same Limbic Disease around the same time.
If I can ask, have you been able to get some memory back ? I ask because I haven’t been able to remember any of my life. Every once in a while I will see a picture and it sometimes looks familiar. I have read on the Mayo Site that once you loose your memory with Limbic, it is very rare to get it back. Something about Limbic that damages your brain and the memories are gone forever.
Have you heard about similar symptoms ?
I get it on the sleep, I have always been a night owl so it is a challenge.
It’s been nice talking to you and others, have yourself a great day.
BTW, I live in Massachusetts, believe it or not the temperature last night was 51 degrees. Take care

Heck send some of that 50 degree weather this way ok? What kind of seizures did you have? I think that memories returning would depend on the severity of the seizure and the type as they affect different parts of your brain. I lost miscellaneous chunks of memory. Some things in the same time frame I had no problem remembering, but most other memories were lost. Some things that I hadn't remembered for decades, those memories popped up. There seemed to be no rhyme of reason for which ones came back. Heck, there were some that I wished would never return, yet they still were here. Our brains are absolutely fascinating. I know our bodies are affected by circadian rhythms and if I'm not mistaken, that occurs around 11 pm for me. So I try to be asleep by then. I believe that has helped with my memory getting better. Take care of yourself and try to get used to the "new you". Appreciate each day, each moment because we've been blessed to still be here.

Suggest you check out the Autoimmune Encephalitis Alliance. They have information and wonderful online support groups for people with your diagnosis. I belong to one of the groups and it has been so helpful and fun!