I would tell you that finding a good neurologist has made a difference for me. My previous one (in another city) knew about ADEM but offered nothing other than drugs for my rehab. This new doctor knew little about ADEM, but he has sent me to so many different kinds of physical therapies, and that’s made a world of difference!
I will add Natasha and your family to my prayer list along with everyone else. This horrible disease is so frustrating, and we have to be our own advocates to get ANY help at all. (Currently I’m fighting insurance which doesn’t want to cover the massive cluster headaches I get courtesy of ADEM. So I guess they’ll just pay for the ER visits instead…)
I am sorry I put Nidhij at the top because I thought I was replying to him/her. I am Tess. All the rest of the post is correct though. We appreciate all prayers. Natasha is going to school but is in a special needs class. I can sympathize with your insurance issues; Ins. is giving my son and DIL the same runaround. Say she doesn’t qualify for physical therapy. Good grief, then who does? I hope you can find some relief for your headaches, I hate this disease , affects so many and yet no one outside the ‘community’ has even heard of it.
I hear you it can be frustrating to say the least.
Sometimes I feel like ADEM survivors are naturally isolated just because we are a smaller community. However I feel like there might be an opportunity to connect with survivors that are going through similar things. For example the brain injury hit me pretty hard, so, the fellowship of other brain injury survivors helped even though they aren’t ADEM survivors.