Hi All!!

Thursday night was the November meeting at the CBS Building in NYC. About 14 people showed and we got 3 new ones.

Excellent meeting. We all had 3 minutes to speak our stories (as we went around the room, each person gave a mini biography of themselves, their diagnoses, etc.).

We all shared information on latests IVIG stuff, and what meds help some and don't help others.

We learned that Neurontin is fabulous for some people and does abolutely nothing for others. It puts weight on like crazy for some people also. Some people were discussing their depression and how they don't know what the future will bring.

Nice people with their own stories to tell. Some have developed PN because they had Lyme Disease. Others have CIDP, Diabetic Neuropathy, some were alcoholic related neuropathies, some were Idiopathic. Some people wouldn't even disclose why they had neuropathy. Fascinating meeting. The point is, we all come together to share info, learn from each other and try and help each other. I think, because of the weather, that we only had 14 people. I hope that one the weather changes after the winter, that we can get more people. It's the only way to really share new infomation and help each other.

And the coffee ain't too bad either!!! lol . No, seriously, the law firm that lets us have the big conference room, generously gives us carafes of fresh brewed coffee (all kinds), fresh tea, cold beverages, fruit baskets, cookies, etc. It's really a wonderful inducement to get out of the house and go into NYC.

When it came to my turn, I talked about Methyl B-12 and how, in my case, it was a life saver, but that it did nothing for Alan, and it does help some and not others. Everyone was writing everything down.

Then Alan poked me and said "Tell them about the soap under the sheet". I said 'oh right". and I proceeded to tell them about muscle spasms and soap under the sheet. Some looked at me incredulously, UNTIL the guy across from me introduced himself as Joe and burst out laughing and said "you know, 8 years ago I might have thought you were nuts, but 8 years ago I was having severe muscle spasms during the night and someone told me about the soap under the sheet and I HAVEN'T HAD A MUSCLE SPASM SINCE.

You better believe everybody was writing that down.

Now, that night was the night I was supposed to change the soap under the sheet. Because it's supposed to last for 30 days. So my day to change the soap is when we come home from the PN support group. It's just easier for me to remember.

Well I forgot.

The next morning, Alan wakes up and says "I have a muscle spasm in my left calf. I said "oh, I forgot to change the soap". I just relaced the Ivory soap with a new bar.

In two minutes he goes: "oh thanks, much better".

so who on earth knows why this works. BUT IT DOES WORK.

lol

Melody