Hello - A family member has been losing the ability to walk and balance over the past 8 months. She has seen two neuros, had MRIs of everything, and an EMG. She has been referred to an ALS specialist but her doctor has said "I am not at all sure it's ALS". He just doesn't know what else it could be or how to treat her.
I don't know the details of the EMG or what she is feeling exactly, just that the thing the doctors are most confused about is this: Her ability to walk and balance is always much worse at night. Twice she has been to the emergency room at night because she is completely paralyzed and really panics, for obvious reasons. The ER doctors can't find anything wrong. After a few hours of rest, she's better and can walk out of the hospital. By the next night, she is very debilitated again.
Looking online and in this forum, I haven't found anyone who mentions a symptom like this, MND or otherwise related. Has anyone else experienced something like this? I figure once the doctors are totally stumped, you have to ask regular people.