Rare Neuro Disorders Symposium

Hi gang,

I’m heading to the 2017 Rare Neuro Immune Disorders Symposium in Columbus Ohio end of this coming week.

I’ll be taking notes for any new info out there and I’ll try to get it posted on here. If you have specific questions for which you’ve not found answers, let me know. I’m happy to ask.


Hy Laura, my name is Rose. In May 2017, my son was diagnosed with ADEM, and have methilprenidsolone and IV IG ( immunoglobulin) but he can not wake up from bed, he cannot eat, he cannot speak, he doesnt recognize people. and now he got celebral atrophy. The doctor in Indonesia cannot identify his illness. What is his illness possibly?

Hi Rose,

I’m so sorry you’re going through this! This website (https://myelitis.org/living-with-myelitis/newly-diagnosed/) might be of some help.

I recommend you try to contact the specialists listed on the page. When I was taken ill, I was in Las Vegas, and most of the neurologists there hadn’t heard of it, so I imagine being in Indonesia, you are facing something similar. Here is the page to find local specialists: https://myelitis.org/living-with-myelitis/medical-professional-network/

I wish you the best in finding out what’s going on and pray for your son’s recovery.


Hi Rose,

I spoke with one of the doctors at the Symposium, and she said that there are some ADEM experts in Indonesia. She wasn’t sure the names, but she said if you weren’t satisfied with the answers you’re getting from your doctors to ask around. Also there are some experts in Singapore, although I doubt you’d want to move your son right now.

Let me know how you both are doing. I’ll try to keep asking around.


I believe we were writing to each other. We kind of lost track. But i think of you and your son. Email me if u can