Hi, just wanted to update you on what we talked about at the meeting.

By the way, it's held on the 3rd Thursday in NYC at the CBS Building. Either on the 33rd or 34th floor. You have to check with the man at the front desk.

So if any of you live near NYC pop in (the next one is April 15th) from 6 to 8 but we usually get there at 5:30 p.m.

It's a nice group of folds (we had about 20 at the last meeting and that's a good number for us to have).

We all went around the table and introduced ourselves (because new members come all the time). And we all share our experiences with neuropathy, and with foot appliances and what meds some of us take, and Methyl B-12.

They were all writing down the info on Methyl B-12. I always give Mrs. D credit for that one. Some people have computers and some don't and many are over 70 so they are not going to be going on message boards but some actually do. Some are in their late 80's and they really have been through it all.

These people have neuropathy for many reasons. Some have underlying auto-immune, Some have had radiation and got neuropathy from the radiation. Some have had chemotherapy and got neuropathy from that. Some have been drinkers, some are diabetic.

There was a guy there who had this underlying auto-immune connective tissue disorder and he also had neuropathy. They did not know why he had neuropathy.

I asked him. How long do you have neuropathy? and he said "oh a few years now", I then said:"Were you at the site on 9/11?" and he said "oh, wow, sure, I was one of the first responders".

I then said "Quite some time ago, my husband had gone to a physiatrist, and the first question she asked Alan was "Were you at the World Trade Center on 9/11?" and we said "no why?" and she said:

"You have no idea how many people who responded, are now coming down with Neuropathy"

So it gave this guy something to look into.

It's a very diverse group. And we learn new stuff every month. And one person's experience with Lyrica and Neurontin is completely different than another person's experience. Some take opiates. Some take NOTHING. Some of them are on IVIG.

And at next month's meeting a representative from an IVIG company is going to speak. And in the following months we are going to have two doctors come and speak.

So all in all, it's a great support group and we have various people come and make presentations.

Of course we all want to find a cure for neuropathy, but until that day arrives, people are trying to learn to cope with the pain and numbness from their own form of neuropathy.

Some are cranky, some are in pain, some are numb. All have their stories.

Some people use walkers, some use canes, but most just walk in on their own.

And next month I will be bringing my balance/wobble board and giving a demonstration on improving one's balance.

Now that shall be a hoot.

So, if any of you can come, do try and make it. You'll see me and Alan and you 'll taste my muffins.

And one guy even brought a cake that he made. The law firm that gives us the big meeting room always supplies coffee, tea, fixings, etc. and cookies.

It's a very nice law firm that donates this room once a month to our group.

Take care,

Melody