Hi All:

What an interesting evening. I had hoped some of you would show up so you could taste my muffins. YEAH, I BROUGHT MY MUFFINS, AND THEY WENT IN FIVE MINUTES!!!! lol

Every one was very nice. We were around 16 people. Picture a very large conference room with a gigantic table, and big comfortable chairs. This was on the 33rd floor of the beautiful CBS Studios in NYC. The view of Manhattan was breathtaking. On the right of the room, there were carafes of fresh steaming coffee, Water to make tea, Bottles of spring water, platters of fresh fruit, and plates of fresh cookies. I never thought it would be like this. Every other support group I have been to (of course for other reasons), well, there would be an urn of coffee and some pretzels. And people had to bring their own baked goods. I have never seen a room where all this was left for us and then the cleaning girl came and cleaned up after we left. The whole floor belonged to a law firm and the lawyers graciously allowed us to have the meeting there.

How nice of them. And they provided all the coffee, etc. Now how nice is that???

Everyone there of course, had neuropathy. Many had CIDP and some were diabetic, like me, and the rest were Idiopathic. You should have seen me walk around the table with my little bottle of methylcobalimin. I mean, everybody was writing down Jarrow, Methyl B-12 and iherb.com.

NONE OF THEM HAD HEARD ABOUT METHYL B-12. Most of these people are on IVIG. One had done the plasmapheresis and it almost killed her. They had to stop 40 minutes into the infusion. She is now on IVIG and doing okay.

We separated in 3 different groups, there was a group with pain, a group who had no pain, and a group with balance problems. I was in the group with no pain because since I've been on the B-12, I'm much much better. I do have burning once in a while BUT NOTHING LIKE WHEN I STARTED TO HAVE NEUROPATHY SYMTOMS.!!! They were very interested in the B-12 information.

I also learned about Anadyne Therapy (spelling??). I am not familiar with this but one person swore by it. She's a diabetic.

There was a guy who was going to South Carolina in June to be DETOXED AND CLEANSED at a resort kind of place that specializes in getting rid of illnesses in the body. They detoxify you. I told the guy "get ready for a colonic". He laughed and said: "well, they didn't really tell me what I would be in for". I said "honey, anyplace that tells you they are going to detoxify your body, well believe me, they are going to make you sweat the toxins out of you and they'll clean out your gut. Everybody laughed. I encouraged him and said "let us know what happens". See I know, we all have to try what we have to try. Others pooh poohed the detoxifying and cleansing thing saying "what does that have to do with nerve damage??" I just said "he's going to do what he has to do".

One girl made an announcement, "you cannot regenerate nerves, no one has ever done that and it can't be done, we have to learn to live with what we have". I didn't open up my mouth. But everybody else was eager for new information ON ANYTHING!!! and many of them were writing it down about the B-12. I, of course told them, that it might work for me, but there's no guarantee it works for everybody. But we try, right???

They showed a clip of Angela Lansbury giving a promo about her late husband and how he had Peripheral Neuropathy. They are deciding whether or not to write a letter to Oprah's show (on official Neuropathy Association letterhead). I told them to contact the Ellen DeGeneris show too!!!

They want to bring the nation more awareness of Peripheral Neuropathy. They also want to see Stem Cell therapy allowed.

Some of them had the Sural Nerve biopsy. For one person, it was no problem, for another, well, it's been a year after she had it done and she still can't touch that part of her ankle. Gave me the heebee jeebies talking about it. But Alan said he would go for it if he had to. (By the way, he has his next IVIG on Monday and Tuesday).

They talked about Dropped Foot and special shoes and whether insurance covers these things. They especially talked about how you learn to balance yourself when you get up from the toilet. Many people, let's say they are crossing the street, and their shoes hit the pavement at a wrong angle, well, they can't get their balance back. And they don't know why!!!

They also talked a great deal about the importance of exercise when you have neuropathy. One guy told another guy, "you must go to a gym", you must move your legs". It's amazing how these people go about their lives, (one guy had the fentanyl patch), and still have time to laugh. And laugh we did.

Let me tell you, I learned a lot of stuff.

AND THEY GAVE OUT SOCKS. These are called FOOTHUGGERS COMFORT SOCKS. The package says "wicks moisture away, adds comfort and warmth".

So we all got socks and we are to report back on how they make us feel, when we attend the next meeting in June.

And they want more muffins!!!!!!!

We are VERY GLAD WE WENT!!!!! I do certainly hope some of you can come and meet up with us at the next meeting. It would be so nice.

Melody