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.