Quote Originally Posted by Rosie1958 View Post



The consultant has confirmed the diagnosis and it's going to be a long haul but at least my brother is now here and I will be able to help him and his family every step of the way.
It's nearly 7 weeks since you started this thread Rosie and we're all relieved to have your update.
ADEM (acute disseminated encephalomyelitis) is understandably not a condition most people will have heard about, and so it's some consolation to you that the diagnosis has been confirmed here. It must have been an additional worry to you that the diagnosis might have been incorrect after all this time. It may still be the case that the biopsy slide will be referred to a neuropathologist in the UK.
The name may be like a foreign language, but in truth it's straightforward:
acute = rapid onset
disseminated = widespread
encephalomyelitis = inflammation of brain and spinal cord
The reason it may follow a viral infection ? - the body confuses a virus with a nervous system protein (myelin) and mounts a response to it which is auto-immune = against self.
I'm sure that's been explained to you Rosie, but hopefully this is of some help to all members who have sympathised with you and your brother. Far better to know that the correct diagnosis of such a rare condition was made, than still be left wondering after all this time, even if as you say it's still a "long haul".