I didn't have diabetes, heart, cancer issues prior to my onset either. I, too, went thru the 'UM DER WHAT?' round of round-robins. Only my own instinct that what I was being TOLD was not connecting to the 'goings-on'! I got lucky, in the speed of my diagnosis, in that I kept pressing, other, unrelated docs...also considering the doc-speak of 'does NOT compute!' route. Then getting lucky-with getting appts. with top Docs! That it took only 14-17 months from initial diagnosis [incorrect, but close] to real diagnosis and treatment...well. just says to all: DON'T TAKE NO FOR AN ANSWER!
WE KNOW when something is plain old 'not right' with your own body and how it works! That some docs discount us is unconscionable. These turkeys are NEVER going to be censured to the point where a serious 're-education' or any 'sensitivity' training will occur.....unless we are very LOUD and constructively GRUMPY! Heck, it's a start.

How do we do that? Two ways...from the TOP and the BOTTOM of the various food-chains...to the point they meet. Yeah, it's often called 'advocacy', either the one-on-ones or the broad brush strokes...I plain old call it EDUCATION! We each know at least 5-10 people who really know of OUR condition...they, can let another 5-10 know... like a chain letter? BUT, if we don't speak, speak up, speak loudly. Who is gonna know?

I have had 40-60 doc appts in the past year. I have had to either educate or summarize my PN issues to each of at least 20 docs in the past year. It's scary that I've had to do this. My thinking is that PN aspects are rampant nationally [whatever the 'causes'] but generally go unrecognized/undiagnosed/under-rated. That I have to give a 37 second summary to an ER docin a manner that that doc gets THE POINT is down right frightening...especially as PN can affect autonomic systems soo quickly! Such ignorance should NOT be allowed! Yet, it is. Who IS our adovcate? ARE they really working well on our behalf? OR Should we have to create another organization competing for the non-profit bucks in ever short supply? I don't know- but, gotta tell you, MS folks 'look OK' too...until... Go figger?

Hugs and good minutes, extending to more for all! - j

I have been reading the Neuropathy Association’s page on their 2nd Annual Intimate Evening Dinner which raised more than $150,000 for the cause. It can be seen on
http://www.neuropathy.org/site/PageS...ndOct1othCeleb .
I feel we should congratulate the Association in raising this amount.

Two things stand out for me. One is the result of a survey they conducted which found that fewer than 7% of all adults asked knew anything about our disorder! The other is about James Gardner who is Vice President of Investor Relations for Pfizer and has a wife who suffers from neuropathy. What a shame he can’t push Pfizer into producing a drug specifically for the relief of neuropathic pain instead of them palming us all off with drugs designed to treat other diseases and then selling them illegally off label in the hope they will help us. Perhaps I just expect too much of our friendly caring drug companies – that must be it.

One other point mentioned refers to the treatment Mother Dolores Hart received when the disease had crippled her. It implies she is now no longer crippled. Does anyone here know what form of treatment Dolores had? I can find nothing on the Association's site. It is certainly wonderful to see her looking so well.

The reference to the Association’s Hollywood growing connection is sounding hopeful too. As has been said here, the more celebs and politicians etc. we can find who suffer from any form of neuropathy and are willing to talk about it the better are the chances of our disease being taken seriously by those who should be doing something for us. We must also raise awareness above 7% somehow and that was amongst educated adults.

Tony

Tony,

$150,000 is a good chunk - if it gets used wisely! As for Delores Hart - I belive she is being treated on-going with IVIG - saw special on TV about her - she is still suffering - but the IVIG is helping her!

Kmeb

We probably won’t know just how the money will be used! But I hope so.

I wondered if Dolores was having IVIG but nowhere was it mentioned. I know she developed PN from a root canal job in 1999 and I believe she has been doing some political lobbying recently. She sure is a great ambassador for the cause. It is ironic that she would carry so much more weight had she still been a film star.

I hope you had a peaceful Christmas

Tony

--she has been aided by IVIg infusions.

Her neuropathy had a sudden onset, and though she is still officially "idiopathic", the effectiveness of the infusions argue for some sort of molecular mimicry autoimmune reaction. This is thought to be behind a goodly number of "idiopathic" syndromes (mine included).

The other major possibility for those labelled "idiopathic" is a toxic reaction.

I am glad Mother Hart is talking about her situation, but she doesn't seem to get a lot of publicity outside our own little community. Now, if she were still a working actress . . .

I have often wondered why Andy Griffith did not go public with his bout of Guillain Barre (perhaps because he recovered farily quickly and almost fully)?
He certainly has a high enough profile to give this more juice.

A number of us try to advocate when we can. I'm trying to wrangle myself an
invitation to testify (through a recently elected legislator I know) when the NY State legislature takes up the question of universal state health insurance.
And, for those who haven't seen it, there is this:

http://jscms.jrn.columbia.edu/cns/20...los-neuropathy

The author of this article has a mom who suffers from neuropathy, and who was treated at Cornell-Weill. I just wish this article had been picked up by more outlets, though. (Apparently, some of the other articles in this edition, like the one about bald women, got very wide dissemination.)

Interesting find, Kmeb, that Neuropathy Action Foundation. I looked over their site, and they seem to be well-meaning, but they seem to advocate mostly in California and Arizona. (Maybe that's why I had not heard of them before.)

We do, of course, have the national Neuropathy Association, but I have to be blunt in saying in my interactions with it, it didn't seem to be well-organized or loudly advocative (and it seems to be chronically underfunded).
The difficulty in navigating the message boards is what made many of us post here and at Braintalk far more than there (though I will admit their website explanations of neuropathy types are much improved from those present a few years ago).

I wonder who else is out there in the public spotlight with odd neural symptoms that physicians are having trouble explaining. (I keep thinking about athletes, and I keep trying to research--I know basketball player Todd McCullough had to retire due to compressive neuropathy of the feet, for instance--but would any such people think about putting the effort into advocacy?)

Tony...don't mean to seem picky...but the releases 'said' raised $150,.k from the EVENT...did not say what the 'net' was after expenses... The celebrities 'cited' aside from Sr. Hart, did not imply or indicate actually HAVING PN...only a 'familiarity' to it... I for one, would like to know HOW 'familiar'?

DUH? WHY would I want to join the PN Assn, when the info they post on the condition at their site [aside from newsletters -available ONLY to those who pay to join] is at least 5 years out of date? I need only to refer anyone to the info on IVIG that they post...Not to mention the issues mentioned here, at the PN Assn site, and many many other places regarding their lack of public clarity in terms of their finances, expenses, and, not even who is on their board of directors!....Obviously one board member has an either actual or potential conflict of interest based on what you have shown us....

One thing I KNOWis boards, I used to fund federal programs to encourage board development for non-profits...walking that board LINE can be a sticky issue. Acknowleging board members is a sticky issue, politcially, policy-wise and pragmatically. THIS is an issue discussed about other non-profits on other boards.

IN this case, tho, I ask you, what was Patricia Neal in rehab for? If I recall correctly, it was a possible toxin-related source of neuropathy. No pain is to be sniffed at, or scoffed. I am just not finding any counter-point PSA's to the ads on restless leg syndrome...initiated by the organization claiming to be a leader for those with PN. I don't see any leadership, I see followers all.

Further, how was their survey conducted? No background or stats. Humm. No details, probably one should question the quality of the survey.

I agree with Kmeb, that other site is interesting as a potential alternative. One to be thoroughly read. - j

Unfortunately most of the actors that have come out about their diseases have had to because it shows, Michael J Fox (Parksions), Christopher Reeves (spinal Cord injury), they couldnt hide it .Other diseases because they wanted to take a stand on the them like Montel Williams, (he was a big enough star that he knew it wouldnt hurt his carrer) as was Marry Tylor More.
Look at how long it took the Stars to come out to say they were HIV Pos or has Aids.
Being Ill hurts there carerrs. People dont want to hire them if they are sick and dont feel good some days or will get worse as sometimes in PN. And most people dont know what PN is so they wouldnt have that empathy that alot of other diseases cause their fans to feel for them. It would have to be a brave person to say they have PN and then see how much work they got if it got worse, went from walking to walking with a cane to being in a wheelchair, so they may not want to show what they have because the people that hire them might go with someone "healthy".
Im sure there are actors out there that just dont want to loose their livelyhood and speek out on this. I cant judge them but maybe some brave person will do it.