Desperately Seeking Help for my Brother

[Doc Alan]

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".

[Rosie1958]

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.

Doc Alan, thanks for the advice ...... I had asked for the biopsy slide to be brought to the UK with my brother before he left but found out that it's not hospital practise to do so. However, they promised to make a "copy" which is being couriered to me so that I can take it to the hospital. I don't understand how a copy would work but I hope that it is of some use. Just before he left, the diagnosis in Philippines was changed to Multiple Sclerosis but the UK consultant has disagreed with that yesterday which is a huge relief ....... I have to say that the Filipino neurological consultant was very professional, supportive and caring and was able to stablise my brother but even he said that he would be better off in the UK and helped us to get him there too.

Thank you so much to each and every one who has posted a reply, I am VERY grateful to you all, it's such a good feeling to have some very valued support.

By the way, I had a nice chat with my brother's new nurse today, and guess what? ........... she is Filipina !!!

[Doc Alan]

I had asked for the biopsy slide to be brought to the UK with my brother before he left but found out that it's not hospital practise to do so. However, they promised to make a "copy" which is being couriered to me so that I can take it to the hospital. I don't understand how a copy would work but I hope that it is of some use.

A "copy" WILL be of use. They will either send the tissue "block" (suitably processed so very thin sections can be prepared for microscopy), and / or tissue sections already prepared, on glass microscope slides. Either way the sections which will be seen here in the UK will be virtually identical to the originals because they are taken from the adjacent tissue (within a fraction of a millimetre).
(As for the suggestion of multiple sclerosis ( MS), I can understand why they considered that, as it's in the same group of conditions as ADEM, but you've been reassured by the UK specialists that they don't think it is MS).
I'm glad to have helped in addition to the great support given by other members