Nah, we don't always have guest speakers, once in a while we get them to appear. Steve takes care of all that. He recruits doctors, and nurses, and IVIG people, etc, and they come and show slideshows on pain, and then we all have discussions.

I remember (about 2 years ago), there was this neurologist there. She sat at the end of the table. I asked her "I have a question for you, how come I asked ALL of my husband's physicians, specialists, neurologists, ALL OF THEM, "Is there a genetic link between Guillian Bare Syndrome and CIDP, and ALL OF THEM POO POO'd me and said 'no, there's no connection", but now when you go on a CIDP forum, it says "A form of Guillian Barre", NOW HOW CAN THAT BE???

She replied "well, we didn't know much about neuropathy till recently, we learn more every day" Back then, they said that Alan had CIDP, and then they said "no you don't have CIDP, so now it's back to being idiopathic poly neuropathy", (which identifies many of the people at the meeting), they have no clue either.

Then I asked the neurologist "would you put down the theory that Methyl B-12 can help neuropathy by healing the nerves BECAUSE ALL OF MY HUSBAND'S POO POO'd that also".

Her reply: "I would NEVER be that arrogant as to tell you that Methyl B-12 would not work, I am HERE TO LEARN FROM ALL OF YOU".

Do you hear this. They come to the meeting to learn from US.

And Steve had a neurologist call him up (he's not a doctor by the way), so the neurologist calls him up and says "I have a 6 year old child with neuropathy, and she's presenting with this and with that", and Steve interrupts him with "Wait a minute, I'm not a doctor",

That didn't matter. Steve KNOWS A LOT ABOUT NEUROPATHY. More so than many physicians I believe.

And the kicker was when he said "Do you know how many people have MS in the United States?" and no one knew" He said "400,000", as opposed to 20 million people suffering from Neuropathy. Yet the MS society has Montel Williams as their spokesperson, and the Neuropathy Association doesn't have anybody to speak for them. He has contacted Dr. Oz who did not respond.

I myself wrote to Oprah, and Dr. Phil as did others, but no one responded.

Someone said "Maybe they feel that Neuropathy by itself is NOT a disorder but it's a RESULT of having SOMETHING".

We covered a lot of territory at this meeting.

As we left, some newcomers walked over to me and said "oh, that was a good meeting, can't wait for the next one".

And riding home on the Access-a-ride, we shared the ride with a blind man with a guide dog. I asked the nice gentleman, "What is the dog's name?" and he laughed and said "Hickory".

Immediately, all the people on the Access a ride started singing "Hickory Dickory dock, the mouse ran up the clock".

You meet the nicest people on the Access-a-ride.

melody