Your situation was far worse and you were lucky to get the IVIG.
And, yes we should be better informed about what we are being treated with! It is really up to US, ourselves to be our own advocates about the aftermaths of medications and therapies. Unfortunately, at times, such as yours, you aren't in a situation to get or become informed!
My own situation was what was called a sub-acute onset...in that it was 5 weeks from the time I got numb toes to being admitted into the hospital [where they really did nothing].All the hospital docs could surmise was that something was 'going on' and it took a few 'second opinions' [over a year of doing] and heaps of tests, MRI's and nerve conduction studies, not to mention that old 'spinal tap' to get diagnosed and IVIG. I too, was healthy one day and a few weeks later needed help getting out of any chair! Not to mention bed or other places. The pain meds helped some, but also knocked me out to the point where I was sleeping 18 hours a day.
I understand that the 'system' in Canada is a bit harder to navigate at times than in the US. I also understand your frustrations! Because during the times I was getting other opinions, things were really getting worse. At that time? I was not at all internet wise, either. Not many 'books' out on the subject, you know?
Can we declare peace and share info instead? Having such a chronic disease is really a mess-up to any life you thought you would have. But, it proves your mettle and that you are a far stronger person than you realize.
's - j
My onset followed a long bout of pneumonia w/3 courses of anti biotics... stuff started less than 2 months after.