Originally Posted by glenntaj

--there certainly have been some attempts at research into unknown causes of neuropathy, especially through some of the larger neuropathy specialty centers such as Cornell-Weill, Hopkins, and recently Jack Miller in Chicago. (You can pull up their websites and often see what they've been up to, and what trials they may be planning.)

And, of course, there've been broader research efforts intot he nature of pain, involving SUbstance P, permanent tropic changes in neurofilaments that sustain pain circuits, etc.

Admittedly, these efforts have not brought as much hard knowledge as one would hope.

The problem in getting good research going out there often involves money. There's a lot of money in diabetes, since many, many people suffer from it (or will be suffering from it)--learning to control it with pharmaceuticals, mostly--so it's easier to get funding to pursue research in that area. (Many could just as easily control their diabetes, and probably their diabetic neuropathy symptoms, with lifestyle changes--diet, exercise--but that seems a lot harder for most than pill-popping.)

It's not that no good comes out of such research--often, what's found to be useful for relief or control of diabetic neuropathy may have applicability to other suffering from idiopathic syndromes, especially if they involve small, unmyelinated nerve fibers (as diabetic neuropathy typically does). Anodyne therapy, for example, originally developed for diabetics, is often useful for people with other small-fiber syndromes. Lipoic Acid has long been used by diabetics, but there's been some research that indicates it can help others, as well. This is probably due to the mechanisms of damage, and nerve repair, being analogous.

Coming at this from another side, immune modulating therapies, such as IVIg and plasmaphoresis, were not originally developed for neuropathy per se, but of course have been applied to suspected autoimmune neuropathies, and some research is going on in this realm.

The problem may well be that when something is "idopathic", science does not yet know just how to frame the research questions--it's unknown what the mechanism is, so it's hard to know what to try to test.

Now, we have discussed here in the past the problem neuropathy in general has in getting publicity and advocacy (I've written about this extensively in a number of spots on the web), Part of this is that neuropathy is often thought of as secondary to another condition (such as diabetes) that attracts the publicity. Part of this is due to a lack of a celebrity spokesperson--about all we've had lately is Mother Dolores Hart, who is a nice enough person but does not have the name recognition of Michael J. Fox for Parkinson's, or Annette Funicello/Montell Williams/Terri Garr for MS. (There have been a lot of famous neuropathy sufferers--Andy Williams, Mary Tyler Moore, Johnny Cash, Bobby Short, Julia Child--but they tend not to advocate around it; some, like Ms. Moore, advocate for the primary condition.) And, part of this--and I'm being really blunt about this--our natural advocacy organizations, sucah as the Neuropathy Association, have not had the funding, or often the visionary management, to get the condition the publicity it deserves. And that is a shame, considering more people suffer from neuropathy than Myasthenia Gravis, ALS, and MS combined.

The people on this board have actually been among the most vocal and advocative--especially as regards the growing knowledge of celiac/gluten-related neuropathy, which has become a much better known entity this last decade. All we can do is keep on talking, writing, explaining, pushing, pestering the media and the medical establishment, etc. Without that financial incentive, though, things are very tough.