anti NMDA encephalitis

[AntiNMDAWarriorWife]

Hi!

My husband had HSV1 encephalitis in March-April 2023, then anti NMDA encephalitis May-August 2023.

He had the steroids, the plasma exchange but it was the Rituximab that finally got it sorted.

I’m just looking to connect with anyone that has suffered with it or their families?! We don’t have a big support network and appointments with professionals, surprisingly, seem so few and far between. Recovery is going well for him but it’s not easy!

Would really love to chat to anyone that can advise, relate, sympathise, share; anything! Thank you x

[cat3]

Sorry WarriorWife, it seems I'm not alone in lacking experience of this condition. I had meningitis 30 years ago ...so similarities and differences, but both involving brain infection and inflammation.

The link below, for online support, might be useful ? I see there's an 5 hour online event aimed at sufferers and families on 22nd April.

I hope you find the help you both need.....

All best wishes, Cat . x

encephalitis.info/get-help/

[AntiNMDAWarriorWife in reply to cat3]

Thank you for replying, I appreciate it.

I will look into the event for sure! Since posting this, they actually think my husband is relapsing so here we go again it seems x

[cat3 in reply to AntiNMDAWarriorWife]

Oh I'm sorry to hear that, (really hope they're wrong on this occasion). Please keep us updated m'dear. Best wishes, Cat. x

[torontomapleleaf]

How long did this last for your husband? We are in our 8th month and we are suffering! the hospital has no resources for him and finally admitted. The neurologist have all signed off and we are dealing with a psychiatrist giving him lots of anti psychotics! which is making his condition worse. He has been very aggressive and agitated in restrains! We are just at the end of our ropes. Any help would be great. We are hoping to get into a brain injury clinic just to get some help.

[AntiNMDAWarriorWife in reply to torontomapleleaf]

8 months?! I’m so sorry to hear this.

My husband was admitted to hospital/ diagnosed end of May and was home by mid August. He did have HSV1 encephalitis (a brain infection) in March-April so we’re not sure where his symptoms for the anti NMDA started.

He was first treated with steroids which didn’t work, then plasmapheresis (exchanging all his plasma in his blood for new ‘clean’ plasma) alongside the steroids… again didn’t work. Then he had two Rituximab infusions, we had to get special permission to use the Rituximab for this purpose as it is primarily used for certain types of cancer and that seemed to work.

BUT as I said, he’s been home since mid August, even started returning to work. He carried on with the steroids until January, he is still on anti psychotics and anti seizure meds… however they think he’s relapsing. He had tests done Friday so we should know by the end of the week.

Horrendous condition, I wouldn’t wish it on anyone or their families. Please feel free to chat anytime x