--as I'm very public about my situation.

I am fortunate in that my symptoms have waned over the years (this all started April 11 2003 at around 11AM--it was that sudden), though I am still left with residual symptoms and am prone to all sorts of compressive neurological effects now--these are thought to be related to re-enervation I've gotten over the years (which has also been documented by subsequent skin biopsies). The theory is that as nerves regrow they fight through and around various tissues and often don't wind up in the same pathways as they once were, so they are more prone to compression by other bodily structures. (I even have to watch where I build muscle by weightlifting now.)

The fortunate thing about many acute or sub-acute presentations that involve an autoimmune cascade is that they may peak and then subside slowly over time, although recovery tends to be patchy and incomplete (very much as Guillain Barre syndrome is described). Of course, this depends on cause--the slower onset presentations have a greater tendency to be chronic (again, much as CIDP, or chronic inflammatory demyelinating polyneuropathy, which is often considered to be the 'slow' version of Guillain Barre, is described).

I never received immune modulating treatments as there was no documentation of antibodies--my treatment was basically palliative for a long time (a lot of Neurontin, which I eventually weaned myself off of years later). But it IS a good idea to get those antibody tests done as if one or more can be documented it might help get one the more expensive immune modulating treatments such as IvIg or plasmaphoresis.

Many of the ganglionopathies and neuronopathies may present with symptoms beyond the limbs/extremities (face, trunk, head), but there are neuropathies that can present this way as well, notably some associated with vitamin deficiency, celiac, and some toxins. The trick is to find a doctor willing to go to the lengths of testing if necessary, which is why I mentioned the centers in my other post--too many local practitioners just have no idea of the many possible causes and presentations.