HSE

[jujumello82]

Hi there,

My boyfriend is 37 years old and he got diagnosed with HSE 2 months ago. He was doing well under the circumstances. He has the usual memory issues, problems focusing, but he aware and taking care of his self care issue, helping his daughter with school Etc. The past 2 weeks he started to get worst. He is going back to a more of a child like state and also having issues with self care. Does anyone in here was doing good and progressing and out of the blue started to doing bad ? We are just so confused! We though that he could only get better and not worst.

Thanks

Julia

[alpappy]

I two months is still early I am three years out and have good and bad days but am back to driving etc so hang in and give it time you have my sympathy and best wishes dr Alan papertc

[Ocean96]

Hi jujumello82

I'm really sorry to hear your boyfriend hasn't been well.

Two months is still very early and the thing with this disease is it takes time. I know it's not easy and it can be frustrating and confusing at times but his brain has been through an awful lot and it needs to rest and recover slowly.

If you are ever concerned it's always good to link in with your doctor and ask as many questions as you want. They are there to help. Unfortunately, there is no rule book on how to deal with encephalitis and its after-effects but there is advice. This is a great piece from the encephalitis society that may be of some interest to you: encephalitis.info/guideline...

Also here is a video of Paul who had encephalitis and it wasn't until years later he truly started to understand what encephalitis had done to him and his brain. youtu.be/wLGHcxOSmQo(Not working as expected?)

With help, he is doing really well and the encephalitis society is always here to help.

All the best

[Paula-38]

Hi jujumello82, I had HSE and Status Epilepticus together back in the 1970's as a 1 year old, I started off a lot worse than I am today (although that probably doesn't make sense). I seem to be better off now than when I was growing up and my school life. I was forever picking things up and that used to put me in hospital with repeated grand mals about every month, until I got to about 10 I think when it went to every two months I could have been younger/ older I would have to ask my Dad if he knows. I had severe paranoia, anxiety depression, and then when I got to about 13 I showed signs of OCD but I was diagnosed in early adulthood that was after my seizures had stopped. I was an adolescent by then. I have put a few different posts up about my Lifelong Encephalitis journey. Please feel free to have a look at them all.

Focus/concentration, I always have had a slow processing speed, the ability to follow a storyline on TV was and still is much slower than maybe someone else would do, because by the time I started to get into the programme, sure as eggs it would be finished by then that's how long it takes me if I have never seen it before. Being mentally slower but not so much any of the other symptoms that your boyfriend has. I hope that he gets all the help he is entitled to. There are a lot more resources out today than there were when I was little - I got NOTHING. Wishing your boyfriend all the best!

[jujumello82]

Thanks everyone for the support. My boyfriend ended up back in the hospital due to his decline. He developed a post viral autoimmune encephalitis. He is still in the hospital doing his 10th treatment for plasma exchange and also other immunity suppression therapies. His biggest issues now is the mood swings, the doctors are trying to figure it out some meds to help him calm down. We are hoping to have him back home in the next few days. 🙂