Welcome to NT...there is a lot of info, support, and whine parties here

If we didn't have a place like this to vent, where friends understand exactly what you're feeling and dealing with, I think we'd all do a Thelma and Louise....
Try to keep a symptom journal with dates of onset, as well as your list of questions for your doc. If possible, bring another set of ears with you. It can be overwhelming, and I have cognitive issues that inhibit my memory, so DH coming with helps the neuro by telling him what he sees me going through and he also remembers what the doc says...
You've had a lot to deal with...especially with your children's issues. Prayers for you and your family as you deal with another challenge.
Keep us up to date...