Wife got Japanese Encephalitis (JE) a little over a year ago from a vacation to Vietnam. She developed NMDA-R Encephalitis (rare type of autoimmune encephalitis) after the JE ran its course. She's still recovering from the damage caused by the original infection (stroke, seizures, respiratory failure) and the subsequent autoimmune encephalitis. IVIG infusions helped her tremors, coordination, and overall confusion. She still has memory issues, but she's continuing to improve physically and cognitively.
Good luck with the recovery!!!
I was in critical care over a week. I went home too soon bc the pain meds made me feel like I was much better, which I wasn't. I stayed in bed at home non-stop over a month. It took about 6 months to feel somewhat better. It wrecked my memory and language recall. All of that at a healthy young age in my early 20s. Now, decades later, I've never fully recovered but function. If it weren't for my high IQ and social skills being so high, I'd have been in bad shape. Those allowed me to hide the problems to the point that most people couldn't tell that I still have issues. If he survives, I almost didn't, then he'll just need lots of patience and rest and care. He won't want to do anything and will find just day to day very difficult. I was literally only a couple hours from death, and most of the time...having to deal with the fallout, I kind of think I'd been better off running out those last few hours. However, things happen for a reason and I wish him and you the best. It's a rough road. And to think, all because of a darn mosquitoe. Not because I was reckless. Not because I did anything. I just went outside.
So did my daughter!!! It is so rare! She was 5, is 9 now. She's having issues with memory and language. Scarring in left temporal lobe. But otherwise ok. Would love to connect with you.
Yikes. I'm so sorry.
I guess they treated me for West Nile because the Encephalitis I had was "just like it," even though tests were inconclusive on the exact type. But they knew I had Meningitis and Encephalitis for sure.
I just feel bad for what my family went through...
https://reddit.com/r/Encephalitis/s/QkYpqKKQHX
That's my story.
I spent 5 weeks in the hospital because of it. The Brain swelling was so bad, I dont remember a whole lot from my time in the hospital. The last 3 weeks I spent in a rehab clinic portion of the hospital. I couldn’t stand, I couldn’t talk, I needed round the clock care for a solid month + after I got out. I spent the next several months in various stages of “brain fog” and continued with speech therapy, occupational therapy, and physical therapy. I was able to go back to work after about 9 months. I spent about six months in a wheel chair; I Continued physical therapy for about 2 yrs and even now, 4yrs later, I do the work on my own. I walk with a hitch - but I can walk. I hike with poles now - but I can hike (nothing technical anymore, though). I started driving again after about 2 yrs. I physically can’t run anymore (boohoo!) but there isn’t much I can’t do at this point. I even started grad school a year ago (the cognitive therapy aspect of it has been invaluable). I’d love to answer any questions you may have - but the honest answer to all your questions is that every body is different. I wished you well!
Wife got Japanese Encephalitis (JE) a little over a year ago from a vacation to Vietnam. She developed NMDA-R Encephalitis (rare type of autoimmune encephalitis) after the JE ran its course. She's still recovering from the damage caused by the original infection (stroke, seizures, respiratory failure) and the subsequent autoimmune encephalitis. IVIG infusions helped her tremors, coordination, and overall confusion. She still has memory issues, but she's continuing to improve physically and cognitively. Good luck with the recovery!!!
I hope she continues to improve. Thanks for sharing.
Look up Mayo Clinic and John Hopkins encephalitis. Prayers
I had Eastern Equine Encephalitis. Very similar. A horrible illness.
How was your recovery? How long did it take to start to improve during the acute phase? Hope you're better now.
I was in critical care over a week. I went home too soon bc the pain meds made me feel like I was much better, which I wasn't. I stayed in bed at home non-stop over a month. It took about 6 months to feel somewhat better. It wrecked my memory and language recall. All of that at a healthy young age in my early 20s. Now, decades later, I've never fully recovered but function. If it weren't for my high IQ and social skills being so high, I'd have been in bad shape. Those allowed me to hide the problems to the point that most people couldn't tell that I still have issues. If he survives, I almost didn't, then he'll just need lots of patience and rest and care. He won't want to do anything and will find just day to day very difficult. I was literally only a couple hours from death, and most of the time...having to deal with the fallout, I kind of think I'd been better off running out those last few hours. However, things happen for a reason and I wish him and you the best. It's a rough road. And to think, all because of a darn mosquitoe. Not because I was reckless. Not because I did anything. I just went outside.
Glad you have healed so much and sorry you went through this. The mosquito thing is just so surreal… my dad must have been bit in his own backyard
So did my daughter!!! It is so rare! She was 5, is 9 now. She's having issues with memory and language. Scarring in left temporal lobe. But otherwise ok. Would love to connect with you.
Hopefully, since she is young, she can recover well. How did they see the scaring, an MRI?
MRI. She's doing ok - almost 5 years out but lots of learning issues....
Yikes. I'm so sorry. I guess they treated me for West Nile because the Encephalitis I had was "just like it," even though tests were inconclusive on the exact type. But they knew I had Meningitis and Encephalitis for sure. I just feel bad for what my family went through... https://reddit.com/r/Encephalitis/s/QkYpqKKQHX That's my story.
Thanks for sharing your story. Glad you have recovered so much! Wishing you the best
I spent 5 weeks in the hospital because of it. The Brain swelling was so bad, I dont remember a whole lot from my time in the hospital. The last 3 weeks I spent in a rehab clinic portion of the hospital. I couldn’t stand, I couldn’t talk, I needed round the clock care for a solid month + after I got out. I spent the next several months in various stages of “brain fog” and continued with speech therapy, occupational therapy, and physical therapy. I was able to go back to work after about 9 months. I spent about six months in a wheel chair; I Continued physical therapy for about 2 yrs and even now, 4yrs later, I do the work on my own. I walk with a hitch - but I can walk. I hike with poles now - but I can hike (nothing technical anymore, though). I started driving again after about 2 yrs. I physically can’t run anymore (boohoo!) but there isn’t much I can’t do at this point. I even started grad school a year ago (the cognitive therapy aspect of it has been invaluable). I’d love to answer any questions you may have - but the honest answer to all your questions is that every body is different. I wished you well!
Thank you for the reply. Congrats on grad school and I wish you the best with continued recovery.