Good day

[jujumello82]

One year ago my boyfriend was diagnosed with herpes encephalitis and 2 months later he was diagnosed with autoimmune encephalitis. He is 38 years old now. This past year was so scary, he was in the hospital for 3 months! When he left he was life a Blank page…we thought that he would not recover! The doctors had no idea what was going to happen to him. Now, one year later we went to see his neurologist yesterday. The last time he was there was in October and he was still

Long ways to go. She was in disbelief of how well he is doing! Is was very sweet… she almost cried. She said she had several patients with encephalitis but he was the first one with 2 types. She truly did not know how he was going to recovery. Today he does have some cognitive deficits, personally changes, he has an issue with his body getting over heated even in mild climates ( he does have a hard time dealing with that) and he takes medications for depression, seizures, mood stabilizer, and antiviral meds. We know He will never be the same man that he was before we know that

, but we also know that he is a different man now and that is ok too. He knows that he won’t be back to 100% of his base line … but he can be very close to. When he got diagnosed I was very desperate to find hope and good outcomes with someone with 2 types of encephalitis ….now I do. The Past 3 weeks he is back at driving, typing 65 words per minute on his computer, and actually winning on his basketball games on PlayStation lol. Just in the past month we started to noticed little bits of his personal come back, a smile, gestures! It’s nice to see that. I just want to say that we are so proud of him, that he went to hell and back and he is still here fighting. I hope he can continue to improve, and we know he will always have some deficits but nothing can stop him for living a productive life. Yesterday was huge, just seeming his doctor’s reaction to his improvements gave us hope and assurance that things will be ok . So in the end yesterday was a good day!

[Gandalf2]

Hi Juju, that's a great story of recovery. I have two types of Enc too and on a similar range of meds. He sounds to be doing very well, driving, typing etc. I guess his young age is helping - I'm 72 and things seem to move more slowly, looks like you two will have many more years of happiness together. Hurray!

[Ocean96]

Hi there! 👋 Thank you so much for sharing your story. The past year sounds very full on with lots of ups and downs. How have you found it all caring for your partner? I’d say it can take a toll at times but you are incredibly courageous and brave. As is your partner! Wow what an amazing story of two types of encephalitis and such an amazing recovery! Have you found the hospital team supportive? My family and I join the encephalitis societies virtual gatherings. We find them very useful! encephalitis.info/blog/virt...

[every_cloud]

Hi Juju, I'm so pleased to read this. Our stories sound remarkably similar. my husband too had HSE then Autoimmune Encephalitis around 6 weeks later. This was last year, he's 37 now, and is now pretty much back to normal again. I hope you're ok and have had plenty of support through this. It's been the hardest time of our lives. Best wishes to you from the UK

[jujumello82 in reply to every_cloud]

You r right ! very similar My partner is def not 100% back but so much better. We r just glad to be close to the other side of things.

[Cdnlady]

Wow just reading this gave me a glimmer of hope. April 2021 my husband was diagnosed with herpes encephalitis in June 2021 diagnosis NMDA autoimmune encephalitis. To date he is still battling and not himself no where near at all. He was in hospital for 6 weeks and since in and out several times for 2 weeks , 10 days, 6 days etc he has had steriod iv 2 times, IVIG, Rituximab 3 treatments so far and due for another in mid March. He is home and I am his carer, its defunitley a difficult role warching your spouse be a totally different person. My heart breaks for all he has and continues to endure. I hope one day I am able to share a story similar to yours. Congratulations on your partners recovery and I hope he continues to show more and more improvements ❤️.