My girlfriend has a working diagnosis of ADEM and has been in the hospital for nearly 2 months after suffering complete paralysis (including speach). She is slowly recovering. It's been a long road and the doctors were scared of death at one point because of the acceleration and speed at which this came on. We went from steroids, to plasmapheresis, to cyclophosphamide (chemotherapy) with steroids in order to bring down the inflammation. The plasmapheresis seemed to help the least and it was during the 11 sessions of this where she deteriorated the most. From my point of view the steroids helped the most.
Now that she is recovering we've been talking with doctors about what we can do to help her recovery. We always get the standard line of "time and therapy". I've asked about vitamins (B12) and other things, but the doctors say nothing will do more for her at this point. The only vitamin they are giving her is vitamin D. They have her on meds for spasms, blod clots, and some stomach/bathroom related medicine.
I had an earlier post wondering about remyelination, but I was wondering what the thoughts of some of you might be on having a better recovery. Do you think I should push for anything or am I just worrying too much?
It just seems so hard sometimes and I feel so helpless. I've heard about so many new and innovative treatments and therapies, but it seems like the doctors just shrug all that stuff off...