Hello, thankyou for sharing your story. It's not easy to share but you are brave already to get it out there. Our 22yo daughter got sero negative auto immune encephalitis 9 months ago too. Her frontal lobe has been affected so many behavioural issues like ADHD, impulsivity, hyperactivity, disinhibition. It's been a very tough road but with therapy she is improving. It's just a show process. Do you have therapy for your husband. Hang in there, this group is so helpful and I have found much comfort here in times when I was falling apart. My thoughts are with you. Sending virtual hugs 🌻
Hi Konemor, thanks for reaching out. My husband (age 45) had very very similar symptoms in January 2024. Sudden acute onset, short term memory loss, epileptic seizures, delirium, hallucinations, fear, taste and smell all confused. He was diagnosed with autoimmune limbic encephalitis in March and began treatment.One year later, he still takes a lot of pills, still sleeps a LOT, still has memory struggles, but we have some sort of life together and enjoy the simple things in life (as long as they happen early in the morning, before he starts resting!)
My heart goes out to you both. Would love to hear more about your journey together and life after E x
Hi, I am so sorry to hear about your husband. If you would like to chat to our support service you can email support@encephalitis.info. We also have peer support groups which you and / or your husband can join monthly to speak to others in similar situations. encephalitis.info/online-pe...
Thank you for your replies! It really means a lot to me. ❤️❤️(I don't speak/write English fluent, and thinking/translating/texting takes a while. Does this page auto translate?)
I'll reply to myself to avoid the extra work, but I appreciate each of your comments, and will also reply short to everyone! ❤️
He's in treatment, but the effects hasn't shown yet. He first got antibiotics (assumed virus).
After CFS and bloodwork came back, he had one week on methylprednisolone, followed by two rounds of IVIG.
When he didn't respond (enough), the neurologist turned to Rituximab five months ago. (RTX every 6 month)
We have a good - but small - health care system, and the "worldwide rare" is equivalent considered extremely rare here.
Doc's appeared to be too exited to find GAD65, and didn't pay much attention to the find of LGI1. I might be wrong, but that's because I'm concerned about their decisions, if they made them fast enough to avoid long term damage/symptoms. I'm sure people here will understand, without further explanation.
I've been through severe illness and treatment myself, and truly know how valuable a group like this can be. That's my main reason to reach out, but I also want to - and need to - learn from other's experiences.
My hubby has been my solid rock for almost 30 years. I need to be his rock too, and I'd probably be a stronger one in this company! ❤️
I'll probably keep updating this post with comments for a while, and hope everyone is OK with how I'm doing this.
My husband was diagnosed with autoimmune encephalitis in December 2020 (seronegative). His symptoms have been very similar to your husband's. As well as short term memory loss, he has lost a big chunk of memory from the past. The saddest thing is he can't remember some of our best holidays together. He wasn't offered IVIG or Rituximab, just a course of immunosuppresants (steroids, then Azathioprine) and antiepileptic drugs. He is now off the immunosuppressants and is only taking the AED Lamotrigine. I don't want to worry you, but during all of this he has had two relapses necessitating hospital stays. That said, not everyone relapses, only a certain percentage.
The good news is that the seizure activity, which has been the hardest part to deal with, has lessened considerably over the last two years, since his second relapse. I am hoping it might stop altogether at some point. Also his short term memory has improved. We are now able to go away together again, and we even have a cruise booked for September. In short, it is a long slow process, sometimes with two steps forward and one step back, but with the right treatment he should see improvements over the next year or two. Don't lose hope.
Hi Konemor, I am so sorry to hear about your husband’s experience. I had what was likely autoimmune encephalitis (Hashimotos Encephalitis) in January 2024. I was undiagnosed at the time and was discharged from hospital without treatment specifically for HE. I wasn’t a severe case and my symptoms were mostly hallucinations, delusions, paranoia, headaches, sensitivity to noise and sensory disturbances. I followed up with my GP and she addressed my thyroid antibody issues and I improved gradually from that time. Those first few months were the hardest of my life and some days I didn’t know how I would make it to the next one. But I did, and once I turned the corner then the gains seemed to compound. For me the the real turning point was at about 8 months. When you are on the right track, the improvements seem to compound, like compound interest 😊. I still have cognitive affects and I need to protect myself from too much stress, but I am going well these days. I think the main thing that helped me was a focus on an anti-inflammatory lifestyle. My GP put me on quite a few supplements and told me what to do and avoid in terms of reducing inflammation in my body. From my learning on this site, it seems that there are many treatment paths and while some of them may not have been ideal at the time, the brain is remarkable in its ability to recover and regenerate. Keep going on the healing path, do whatever you can, and know that things will get better. Sending big hugs ❤️
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Encephalitis recovery
Encephalitis recovery update 
Encephalitis 
