[MelodyL]

What a great meeting. I thought there must have been 20 people there. Some new ones too. People come with various stages of neuropathy, various KINDS of neuropathy, (i.e. motor, small fibre, etc). and MANY questions about WHY they got neuropathy.

One interesting case was a woman aged 58. She has motor and small fiber and it's progressing so fast she doesn't understand it and she's looking for answers. I asked her 'do you know why you have this?" She said "well, my mother had it, but they say mine is idiopathic" I said "your mother had the same symptoms?" and she said "yes". I said "and they diagnosed her as idiopathic also?" and she said "Well, yeah". We all then said "well, there is definitely some genetic component going on here, an inherited neuropathy".

What a lively discussion. Lots of good info and great questions.

Glenn was there and as usual, he was his most informative self, answering question after questions and helping everyone.

Me?? I just gave out muffins. lol But I got requests for the next meeting which is on St. Paddy's Day and they want them green. Never made a green muffin but I'll try something.

Also there was this man at the meeting who had Trigeminal Neuralgia as well as PN. Now THAT is a horror story. I told him about Methyl B-12 and he said "oh I take lots of various B vitamins". I said "do you take B-6"? and he said "I think I do"

I then walked over to Glenn, passed him a note saying "Talk to that man about the dangers of too much B-6"

And Glenn did his thing. He knows SO MUCH. Thank goodness he is coming to these meetings. It's nice to pick his brain.

So we all shared what we know about PN and what we hope to know from future meetings.

Oh, we talked about clinical trials going on that are connected to PN. There are 237 clinical trials going on in the USA. Didn't know that.

We talked about how Tramadol helps certain people with burning and pain.

And want to know how good a meeting it was? When the break came midway in the meeting and everyone can stand up and walk around and leave the room for a bathroom break, well, everyone started talking to Glenn and to each other and I laughed.

It's like our brains are absorbing whatever info we have to share about PN.

We also talked about how a chronic pain sufferer deals with friends and family who do not understand PN and how it affects a person's daily interaction with people and whether or not they can participate in activities.

We found out that, it often happens, that a person thought they had a friend but in hard times, that friend turned out to be a fair weather friend.

So I do hope that anyone who lives near the NY area, well, drop in any time at one of our meetings. Next one is March 17th.

Nice group of people.

Just wanted to share .

Melody