Wow, what an interesting meeting. About 20 of us, and there was a professional man there video taping the whole meeting. He told me he was doing this for the neuropathy association and they were doing a dvd series.

The speaker was a Dr. Cary (from Cornell). She was there to give a speech on neuropathy and the various causes and how pain happens. I learned about pre-frontal cortexes and thalmuses.

We were allowed to ask questions, so of course the first thing that entered my mind was right after she explained that pain sensations are processed by the thalmus and go into the pre frontal cortex (I think I got that terminology right).

I raised my hand and I asked. Everything has to go through the thalmus first right?? and she said 'right?" So naturally I said "So get rid of the thalmus". She laughed and said "if you did not have a thalmus you'd be dead". So I said "well, that ended that question". She laughed and said "no, it's not a stupid question, because there is research being done on stimulating the thalmus and what we've found out so far is that when we stimulate certain portions of the thalmus, another part of the brain, right next to this part of the brain, well it takes over and feels pain. She explained how nerves mis-fire, and all the various kinds of neuropathies.

There were people there with CIDP, there was an english gentlemen with Celiac Disease. Many people asked questions on chemotherapy induced neuropathy. Alan asked about trigger point injections and she explained that in cases of neuropathies, the doctors can't pinpoint the exact nerves, that's why they won't give Alan trigger point injections.

People there had undergone plasmapherisis and their insurance won't cover it anymore. Many people there had IVIG every two weeks.

But the main thing the doctor spoke about was meditation and bio-feedback. She said "there is no miracle cure for neuropathy ont he horizon, so you have to use pain management and she said "Now don't laugh, but transcendental meditation works, you just find yourself a mantra......and I said "oh, you mean OM, MANE PADNE OM, and she just looked at me and said "oh yes, that's the one, that's a good one, how do you know about that" and I told her I took a meditation class over 30 years ago, and I never forgot the chant that we all said in class. She explained that we can change our brain, that we have control over our pain, and our brains.

All in all, it was a most interesting group meeting.

Our friend Doug (the one who sends me the scary emails that have Linda Blair from the exorcist jumping out at me in these emails), well, he gave up his bowling night to come and join us . We met him 6 or so years ago at our first neuropathy meeting in NYC. That was a big meeting with over 250 people in attendance. They dont' do those meetings anymore. Now they do it at the CBS building in NYC and maybe 20 people show up. I can't believe that there aren't more than that number.

So everybody asked questions about lyrica (theyall gained weight on it), they wanted to know if new meds were being developed, and the doctor just said "right now, there is no miracle cure for neuropathy, because too many things can casuse it. But she did say that before you go to the doctor, write down your whole medical history and family background, that doctors appreciate this.

So there you have it. We had some good laughs, we all supported each other and I promised to wring Doug's neck if he ever sends me another scary e-mail.

Next meeting should be on November 15.

I had hoped that some of you guys who live in NY would have shown up. That would have been so nice. Maybe next time???

Oh, and this is the best part. At 8 p.m. when it was all over and we all left the building, there were fire trucks, police cars and no one was allowed down the street. It seems a man hole cover blew up right near our block in NYC.

The traffic was horrendous.

Oh well, that's NYC for ya!!!!

Take care,

Melody