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.

Goodness,
I am sooooo tired of hearing about diabetic neuropathy and everyone on neuropathy boards trying to tell you that you have diabetes when your Dr.'s have tested you for it over 10 times and you know for a fact that you are not diabetic.

I am an otherwise HEALTHY 22 year old female. I exercised up until the point that my neuropathy prevented me from doing running on the treadmill.

I'm not vitamin defecient. So don't try to shove B12 defeciency at me either.

Those and thyroid..

Seriously.

I don't know how many times they need to test the same thing over again to know that its NORMAL!

i do not have diabetes - not B12 deficient. i used to run on a regular basis.. until i could not walk. you are exactly what i mean...there HAS to be a reason.. let us not just accept our doctors diagnosis that this is it and deal with it and the pain. Join me. I will spend my day tomorrow preparing a letter to anyone and everyone I can that will listen. I have a very good talent for composing a compelling statement. i am asking everyone to send me every contact they have who may have some influence in helping us. web sites... email adresses.. whatever.. Please send it to me.. I will add your online names as support if you like (no names, or emails) just the influence from members here.

just an example - one holiday i ordered a book from barnes and noble for my son. he was a tv/film major in college. it was called 1000 movies you must see before you die.. i ordered the book online. it was delivered damaged. i called b&n only to be told that i had to return the damaged book, pay for the return, and in order to receive a new one before the holiday, pay for a second. I was ******. I let it go until the day before. As i was wrapping this damaged book, i knew it was wrong. i composed a letter and researched email addresses for executives at barnes and noble. I found many.. I blasted my complaint to every one. Needless to say, on christmas eve, barnes and noble personally delivered to my home a perfect book. not that this is the same, but hopefully shows my determination.

so send me your contacts.. web sites..emails.. i will do my best to argue for more research on snf and less focus on pain meds.. there must be an underlying cause which has not yet manifested.

Let US be the STARS and fight to be heard.

That medical model is sure powerful.

This subject continues for many people who fall thru the cracks with modern medicine.

I've been watching Discovery Health once a week. They have two series called Mystery Diagnosis, and Dr. G.

Yesterday, they had a poor guy on who was bleeding heavily from the rectum whose doctor told him for 2 YEARS that he had hemorrhoids...when his insurance changed he went to a new
doctor who found COLON CANCER!
There are other more obscure cases with more rare conditions that go YEARS before diagnosis.

With my thyroid, my serum blood work was not seriously abnormal. I went 15 yrs with pain and fatigue only to find that my thyroid gland was malfunctioning anyway. A radio isotope scan showed what blood work did not, and I finally got the treatment I needed. It took about a year for my feet to wake up and my carpal tunnel to recede. Finally when my gland swelled up internally and pressed on the laryngeal nerve, did the endo order the more expensive test. Even with the abnormal scan and goiter, he made me wait 6mos to see if it would resolve on its own, which it did not. When I took these tests back to my internist, she comments..." I always thought you were hypo, but unless the tests show something, I won't treat!" Lovely!

We have very high tech medicine today. BUT many people do not get better treatment because of that.

The new information on mercury content in our high fructose corn syrup foods is alarming. TV commercials are now promoting this nasty sugar, saying "you know what they say about it?"..and the other actor says, "yeah, what?" and goes on to tell how normal it is.... all the while it has 5 times the mercury in it than fish!

Drinking water from a water bottle? Say hello to Bisphenol A which is poisoning babies and children like the mercury HFCS in juices, which may be setting them up for who knows what disorders as they get older?

I wonder how many people have had Cipro or Levaquin for an upper respiratory infection and turned up later with neuropathy symptoms and never make that connection?

Get a flu shot this year? Don't think these are innocuous either!

People with neuropathy do get angry. People with chronic anything get discouraged, depressed etc.
When PN starts, in younger people, like mine did so long ago, doctors don't really think it is serious. I was told, "what do you expect when you stand on your feet for 13 hrs a day at a high stress job?"

We live complicated lives. We get exposed to many nasty substances that are hidden in our food/water. We catch viruses and infections that do subtle things to our immune systems.
We paint our homes, strip antique furniture, buy a new home with formaldhyde fumes and carpet outgassing, use teflon cookware ( fumes from which will kill pet birds), take drugs for various other problems, etc etc and think, none of this will make us sick.

The bottom line is that our bodies CAN heal if given the opportunity. People with PN really have to be detectives.
This requires homework, and patience.
One patient may have a drug reaction, another may have arsenic in his well water undetected, another a diet deficient in Omega-3s and high in HFCS, another an autoimmune issue triggered by an infection or vaccine (GBS).. how will all of these respond to one cure? Is there one cure for them all?

I don't think so. Some may be demyelinating. Some may have mitochondrial damage within the cell wall itself. Some may have toxicity at the dendrite endings. Some may have combined effects, some at the spinal cord level. Some may have only central pain issues after an initial trigger (Fibro) in the brain.
PN is really complicated. And doctors just do NOT spend that time with you. They may think it will be self limiting, because some do heal up.

Back to Mystery Diagnosis on TV. Last week was a young man with a GI food gastroenteritis. He was sick for many days and finally went to the ER...and they did tests and gave treatment and support for it. He lost 30 lbs in a very short time. While he was there, he started to develop a neuropathy in his legs. All the doctors and nurses ignored it. When he became paralyzed finally, someone sent for a neurologist, who then diagnosed GBS and put him on IVIG. Explaining to the camera.. Campylobacter food poisoning is known to cause GBS!
This guy ate chicken that was contaminated and poorly cooked at a friend's house.
His PN didn't show up right away either! So then I wonder how many others get milder forms of this food borne illness and go on to develop a PN? Very complicated. And sadly not all doctors know everything. That is why we all need to keep up with what is going on in medicine, not just PN, because illnesses spill over and cause other things as well.
(of course they didn't say what drugs they used to treat the gastroenteritis...if Flagyl and/or Cipro...then the drugs could have caused the PN).

I was not happy with either of my doctors. I stopped going to the endo. My internist continues with me. And I continue to be my own doctor in some ways as well.

And with all our high tech medicine, we still do not have a cure for cancer or some other common things. We have resistant strains now of many dangerous bacteria, which are very frightening (resistant clostridia and MRSa). Medicine isn't doing too well with those either.

I was Dx'd with PN, years after my symptoms first showed.
I had always been a bar & cabaret performer, and actor in community theater
After over 5 years of foot pain and mis-diagnosed by a brainless & stubborn HMO PCP, I started drinking alcohol (at about age 40, to self medicate for my pain. I had not been a drinker for most of my younger adult, and mid life times, but performing in bars, cabarets & such, I had not been a tea-toatler, either.
When I was finally Dx'd, the neuro looked no farther than my recent history and deduced 'alcoholic neuropathy' - a long standing Dx for PN, and an easy one to dismiss my cause. I know that the drinking made my PN more severe, but I also know, now - that the PN occurred waaay before but the AN stays on my records as cause. Look no farther.
I'm sure that it was a different cause, initially - but at least I finally got treament for any type of PN, instead of
'you're on your feet for so many hours and are in a stressful home life , stressful occupation & as a performer, anxiety & stress are a given - sure you are fatigued and your feet hurt - Epsom salts..... soak 'em".
Bah !! Phooey !! Blaaaatt!!.............. WRONG !

Hey --

Mystery Diagnosis: Best show on TV. I've become addicted...

agreed agreed

Hahaha, I actually thought about calling mistery diagnosis up and being like.. sooo.. my Dr.'s can't figure out what's wrong with me, can I be on your show?

Unfortunaly, that show ends with the people actually finding out what they had. So I don't qualify.

My mom watches that show. It just takes that one doctor who will look outside of the box and give you the right dx. I have seen so many docs in so many states with so many diagnostic tests I have no idea any more. I am young when I got PN I was 28 and rsd in legs/ear/eyes. I also have other smaller conditions like a smokers cough but I never smoked that are basically way before my time. Like if I hear you are too young for it and then it happens I will scream.There is no reason to have developed these conditions though I had a past of anorexia but no doctor sees a connection and I agree getting the word out is key. The problem with show like the one stated or Dr Oz for Oprah is many of us are not quick fixes so to speak and that makes a better story for the doctors and getting more people to come to them.
In my eyes I think doctors need to look outside of the box but also try to connect things instead of shove patients off or just look what is in front of them. I always go with my binder of records and written reports but I often wonder if I asked them to tell me what they thought before if a new approach or thought would come into play rather then just going along with what others have said. I keep reminding myself it just takes that one doctor or one treatment that helps me hold to hope