There is one wealthy socialite who has a huge fund raiser every year,
when my brain fog lifts and i remember who it is,let's think about
that letter writing they all have web sites. Mary Tyler Moore already
does a wonderful job raising money and making our so called goverment
aware of a cure for Juvenile Diabetes. Johnny Cash mentioned PN just
before he died,but seemed very confused about it. Perhaps we could get
his children to speak up on Larry King. Sue

are running ads in the magazines. This is the drug, and its website:
http://www.lyrica.com/content/main_h.../main_home.jsp . Its a variation of Neurontin .

When my PN started, four primary care physicians I saw in a row had no idea that there was any known condition with my symptoms of burning feet with numb areas and areas of extreme pain and aching. Brilliant as they were, the first three didn't even do a neuro screening. Instead they suggested tranquilizers (Librium?) and/or referral to a psychiatrist. They refused to send me to a neurologist. The forth, bless him, didn't know what was wrong, but he did a neurological screening and referred me to a neurologist.

Then Neurontin for PN started to be pushed by the drug companies. The drug salesmen educated the doctors and now most doctors are familiar with PN as a condition. That's a pitiful route for medical continuing education, but there it is.

As the boomers age and PN gets more common, it will pay big pharma to start running TV ads. THEN the word will get out to the general public.

Was reading through the old thread from this topic back in December and came across this from KMEB

Just came across this site - worth a serious gander - not only the basic info about PN, Ins. issues etc - but most improtantly for this thread - a section on advocacy - how important it is for all of us to get involved in raising awareness of our needs - and even specific information with "how tos" - how to work with and speak to media, govt officials, etc........ check it out!

http://www.neuropathyactionfoundation.org/index.htm

There is actually a function coming up on June 26 in San Francisco, California. Take a look.

I've got a sister with MS, and I call it MS inside out! See, she was the "good girl" sister, so she got the "quiet" disease that isn't painful, and I was the wild child out of control one, and I got the wild out of control painful disease!

However, we are 1/2 sisters, not raised in the same house, we only share the same father, not the same mother... so it "may" be genetic, and it "may" be coincedence.

Anyway, I wrote Montel because I want him to understand that there is a similar disease to MS that is more painful.

I think that if they get a "flood" of letters from us, it will raise some eyebrows and they will pay attention! One or two letters a year won't make anyone pay attention, but if they get 10 or 20 letters in one week from different people all over the country, they may see it as more than a coincedence! I think if we coordinate this well, we could be on to something!
And if they don't listen the first time, we do it again, and again, and again, until someone does listen! We've got to get the attention of people who can help with this. I'm sure there are people out there who are interested in making money off of our problem somehow! And if we can get our story heard and some more research and medications for us as a result, I'm willing to write letters, go on talk shows, and scream a little!

Terri

Really glad you're getting the word out, but pain is a big problem for many with MS, and pain is not always a problem with PN. Both vary a great deal from individual to individual, and, in fact, people with central nervous system damage due to MS often have peripheral neuropathy as a side effect in addition to horrendous spasms and other painful processes.

rose

The website I quoted above gives information on how to write letters and lots of other good information. I am the type of person who hates to just talk about something. I want to put action to it. We need to get together on this and make it happen.

Has anyone given thought to writing such a letter? Does everyone agree with Mel's suggestion?

Nancy

I'm just not sure that I am the best person to do this type of letter. I know there are more of you out there with more experience and knowlege than I have.

Well, when I wrote to Oprah, I just spoke from the heart and asked her if she (or she could nominate someone) to be our voice. I explained about Neuropathy, that there are many causes and so far there is really no suffcient pain management for most of the people who have neuropathy. I asked her for her help.

Just like Parkinson has Michael J. Fox, and Montel is for MS, so we should have SOMEONE!!! A public service announcement by someone who walks in our shoes, well that would move mountains.

Here's hoping!!!

Melody

did you just recently write to Oprah, or was this sometime in the past?