--she has been aided by IVIg infusions.

Her neuropathy had a sudden onset, and though she is still officially "idiopathic", the effectiveness of the infusions argue for some sort of molecular mimicry autoimmune reaction. This is thought to be behind a goodly number of "idiopathic" syndromes (mine included).

The other major possibility for those labelled "idiopathic" is a toxic reaction.

I am glad Mother Hart is talking about her situation, but she doesn't seem to get a lot of publicity outside our own little community. Now, if she were still a working actress . . .

I have often wondered why Andy Griffith did not go public with his bout of Guillain Barre (perhaps because he recovered farily quickly and almost fully)?
He certainly has a high enough profile to give this more juice.

A number of us try to advocate when we can. I'm trying to wrangle myself an
invitation to testify (through a recently elected legislator I know) when the NY State legislature takes up the question of universal state health insurance.
And, for those who haven't seen it, there is this:

http://jscms.jrn.columbia.edu/cns/20...los-neuropathy

The author of this article has a mom who suffers from neuropathy, and who was treated at Cornell-Weill. I just wish this article had been picked up by more outlets, though. (Apparently, some of the other articles in this edition, like the one about bald women, got very wide dissemination.)

Interesting find, Kmeb, that Neuropathy Action Foundation. I looked over their site, and they seem to be well-meaning, but they seem to advocate mostly in California and Arizona. (Maybe that's why I had not heard of them before.)

We do, of course, have the national Neuropathy Association, but I have to be blunt in saying in my interactions with it, it didn't seem to be well-organized or loudly advocative (and it seems to be chronically underfunded).
The difficulty in navigating the message boards is what made many of us post here and at Braintalk far more than there (though I will admit their website explanations of neuropathy types are much improved from those present a few years ago).

I wonder who else is out there in the public spotlight with odd neural symptoms that physicians are having trouble explaining. (I keep thinking about athletes, and I keep trying to research--I know basketball player Todd McCullough had to retire due to compressive neuropathy of the feet, for instance--but would any such people think about putting the effort into advocacy?)