my daughter’s was normal, too

Anonymous
May 5, 2007 at 1:28 pm

When my daughter had a spinal it was about 24 hours into the onset of symptoms and it did not have elevated protein although she’d gone from feeling weak, to not being able to stand w/out holding someone, to not being able to walk at all on her own in that time frame.

It bothered me too, mainly because it threw the diagnosis into question in my mind. Doctor across the street saw us after we came home from hospital and started asking questions about everything. When I told him the spinal was negative but they dx GBS, he said, well then that can’t be right! It’s always elevated! Which made me a little crazy and got me questioning the dx again. But the neuro assured me he was certain on his dx, taking all factors into account (symptoms, etc) and from everything he’d ruled out: it is GBS. (The same neighbor also assured me, if it was GBS, daughter should be better by now. This really isn’t helpful input for my daughter, who knows she is trying to walk but that it just hasn’t come together yet). I am learning to ignore such input.

In any case, the non-elevation of the spinal fluid protein did lead my neuro into thinking it was resolving on its own and no need for ivig. Which in turn has led to a slower recovery…but that is water under the bridge. She is recovering, just really really slowly!

The more I read the more I realize how many variables there are w/ GBS!

I hope you are doing well with your recovery!