--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, such 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.

Sometimes the research for one type of neuropathy can
flow over into others.

Lidoderm patches are an example. But this is just symptom relief for most.

I did get a 90% resolution to terrible nerve pain in my right thigh by using these patches. I didn't expect that.
I guess in my case the nerve was just "overfiring" for no reason continuing from the surgical damage, and when numbed for 14 days in a row, it just stopped.

Sometimes I wonder if some neuropathies are just REACTIONS to a previous assault that is now over?

My response to strong magnet therapy also gives results like that, but less dramatically.

I just finished a month of night time magnets on my left groin injury which was
getting worse again. It appears to have stopped for now. Its been 3 yrs now, with that terrible tendon rip!

Are you saying that MS etc get funding because a celebrity happens to endorse it ?

If you know that , they must know that too i.e. theres far higher numbers with this , so from a business point of view ( which is basically all this boils doen too ) why wouldnt they focus on Neuropathy when theres a bigger market ?

not meaning to add gasoline to this fire but there are also treatments and devices such as orthotics and special shoes that will only be paid for by medicare and insurance companies who follow medicare guidelines if your peripheral neuropathy is a result of diabetes. So two people can have the same medical condition but one gets help and the other doesnt depending on the cause.

Idiopathic simply means they can not find a reason.

There are probably hundreds of diseases that encompass neuropathy....hence, no research on cases that are 'idiopathic'. The effort goes into trying to find if you have one of these hundreds of diseases....that takes years, a lot of money, and a physician willing to go the distance. (most are not).

Idiopathic neuropathy started a search for me that has ended up with no real reason, but, with the knowledge that my immune system is messed up. I have a diagnosis of Sjogren's without the blood work to match, but with a salivary gland biopsy so full of lymphocytes it would not even be scored.

I had Lyme disease, caught in the first month, with an EM rash.

My T cells are messed up.

I have all kinds of -opathies.

I just have to research more and wait for each new symptom to come along....and hope my IVIG works. So far, it has done away with quite a few neuro symptoms, however, I have a boat load of other symptoms to cause misery.

I ,too, get frustrated with the lack of research on neuropathy that is not diabetic. You may find that sites that cover dysautonomia provide some info on PN.

However, there is not likely to be a great deal of research on Idiopathic PN, because for many, it is a symptom of a disease, perhaps one yet not diagnosed or discovered.

There is so much here which sounds like me and really reinforces my belief that there has to be more to this than just idiopathic neuropathy and finding the right pain meds to live on. I am not ready to accept that. On top of the neuropathy i also have a host of autoimmune issues, all of which could be the marker for an alternate disease, but not enough blood work for confirmation. Unfortunately I have passed on many of these immune issues to my kids and pray that they do not progress to the point where i currently am.

Does anyone know of a younger celebrity or famous figure who suffers from neuropathy? (not diabetic). I would love to shout out to them and anyone else who might listen.

Columbia and Weill Cornell do not accept my insurance. Unless I pay out of pocket, which i can not afford, I can see one of these doctors only if i qualify for an ongoing clinical trial (every one right now is for diabetic neuropathy) . I check www.clinicaltrials.gov daily to see if there are any studies being done in this country related to my issues.

I just find it hard to believe that this is it..Deal with the pain and slowly deteriorate. I want to be there for my kids for many years as a functioning person.

I,like tepol am frustrated, but i will continue to search.

IDEOPATHIC plain and simple. 'Of unknown cause'.

That folks who have diabetic neuropathies are vocal and agressive about seeking and getting treatments is something that WE ultimately benefit from. Also, we benefit from those who have 'toxic' neuropathies due to chemotherapies...those folks too are outspoken.
Now, it just takes educating the physicians of this world to WAKE UP and hear our plights. Not to mention just plain people who have no clue.
Here is a web site about how do do advocacy on our own...don't underestimate that it 'seems' like a California only site? Their board of directors and advisors are national AND their director has been a medical lobbyist UNTIL he came down with Multifocal Motor Neuropathy.
http://www.neuropathyaction.org/links/index.htm
Look under the 'Advocacy is Empowerment' tab at the top. It's a complete roadmap.
It is an approved 'foundation' according to many foundation giving rating organizations. Other 'neuropathy foundations' are NOT and are reported as such.
I am always frustrated about comments that we need a 'star'! HEY! WE ARE THE STARS! and I bet, that we are FAR more eloquent than any 'star' about the pain we go through and how hard it is to get any diagnosis and treatment. WE don't need scripts, after all.
We can and should constantly do 'advocacy' with our insurance companies, our local governments and so on up those food chains to get them to understand that we are kind of like the 'stray cats' of the neuropathy research world. But, don't forget, 10-15 years ago, women w/breast cancer felt that way too. They are making INROADS big-time now.
Thing is, rite now, we 'have' an organization that is supposed to 'represent' US? Take a look, a hard look at what they do....call them and ASK for information-you mite have to leave a message and get a call back in a week from some harried volunteer[bless them]. Obviously you pushed one of my 'buttons'? But, I used to be a grants administrator .. giving $$'s to non-profits and some of these orgs are up to snuff? Others are not. Guess which is which? DUH!
You aren't totally alone, you are HERE and we can try and help as best as one can, long-distance and all. Don't forget, that PN is competing with LOTS of other serious and often far more nasty illnesses. Even tho diabetes and non-diabetic PN's are becoming leading medical issues in the US! Only ones working on things are the drug companies-profit is all motivating after all.
Hugs and hope in the interim! - j

thanks for the link to this site.. i will check it out.. and you are 100% correct.. WE are the stars!!!.. keep them coming.. WE have to make a difference.. It is very difficult for me to see posts on here from people who are just trying to deal with symptoms.. I know the pain is real.. i know how bad it can be.. i am on drugs to control the pain which will definitely decrease my life span and quality. i am not prepared to accept that. WE all need to join together to make a difference. I happen to be watching Armeggedon right now.. people come together to make the difference... and they do.. lets see what we can do together.