NMDA encephalitis after HSV1

[Majaa]

Hello everyone.I already wrote about my brother. The current diagnosis is aNMDA encephalitis. He received 4 doses of Rituximab, within 4 weeks. He was on break for a month, now on the 9th he is going for the next dose.

However, apart from the fact that he is calmer and a little more functional (he eats by himself, he can go to the toilet by himself), I do not notice any cognitive changes. He doesn't recognize the family, the house...

What should we expect next? What should we ask the doctor for? I'm completely confused again.

Thanks everyone.

[Gandalf2]

Hi Majaaa, I can't give any advice as regards medications or doses, or way to go forward, as cases are so different and I'm not a medic. All I can say is that any improvement seems a good thing.

Memory problems are a specific part of the brain. A lot of my memory has gone but many parts remain. Short term memory loss, where he is uanble to remember things that happened recently, like has he had breakfast etc. may improve. In my case things have improved but there is no return to the past. Friends have deserted or have other things and problems of their own to deal with it seems.

If he carries on doing the things he can do and keeping up with physical and mental exercise then that is the path to recovery, or at least to delay further decline. Unfortunately nursing is a specialised skill and keeping the both of you in the best of spirits is not easy. One step at a time and not to overdo things. Willpower and learning to cope with his new situation are hard when all is not well. I must say you sound to be doing a marvellous job, keep going. G2

[HSE_Survivor]

Hi Majaa. Reading your previous posts, I think your brother is at the end of his first year of recovery? The recovery after NMDA encephalitis following HSV1 would be very slow . I was not independent after my first year recovering from HSV encephalitis. In my 12th month of recovery, I still slept for a lot of the day.

The specialist told my husband it would take two years to see what level of recovery my brain could achieve , and that was good advice. If you’re in the UK, ask for a review with a neuro specialist. They can advise you if any therapy would help your brother in this second year of recovery . Speech therapy helped me with my memory , but I know the success of therapy depends on the severity of damage caused by the virus.

It is definitely not unreasonable to request a review - as the first two years of recovery are when the brain tries to remodel itself, reorganising pathways around the damaged zone . It’s called neuroplasticity. A neuro specialist can tell you if therapy could possibly help your brother .