Reply To: Mitochondria
I think your doctor is taking some shortcuts in his explanations to you. Yes, there is a gap between the CNS and PNS; the communication occurs across synapses. I am not sure what he means by the inflammation slipping through, but for now, I would just let it go.
As far as IVIg being a shotgun to get rid of slugs, he needs to realize that unless you take action now, things could get worse. Of course, they might not, but it seems like you should have some sort of treatment to keep maximal function. If your clinical presentation, NCV, and CSF results are consistent with CIDP, then there is no good reason not to use one of the standard treatments now. If you can tolerate steroids, suggest to your doctor that you try them now. They are cheap and often effective and could be a good stopgap while you wait for the mitochondrial results. If they work and you have no mitochondrial disease, then you should suggest that he switch you to IVIg as steroids are not the preferred treatment. Refer him to these guidelines: http://www.pnsociety.com/Guidelines_CIDP.pdf
Godspeed in getting treatment soon.