We went to the Neuropathy Support group meeting.
 

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

Soap under the sheet???

LOL. I guess you didn't get to read this thread.

Read all the postings. You don't have to believe (but if it's good enough for the people at Mayo Clinic), then it's good enough for me.

Here you go!!!

http://neurotalk.psychcentral.com/sh...ht=soap+sheets

it still works for me.
 

Haven't had a cramp or toe cramp since I started!
I use two bars...one under the sheet and one on a plate
near my head on a lower shelf near the bed. (no more stiff neck).

I linked to your thread Mel, here on PN, but I guess people did not
see it.

Oh my goodness, I must tell my friend Vivian. She is always have stiff necks. Never knew you could put soap on a plate near your neck.

Thanks very much.

melody

This is weird, but exciting!
DH and I have minor problems in this area and will give it a try.
Are we talking the Ivory (bar) hand soap?
It seems to me one might want unscented for near the front of the bed and scented for near the foot of the bed. Do your feet end up smelling pretty?

I would like to suggest that you do NOT tell your doc about this unless you have a long term, well established relationship with him or her first unless you want to get a script and a referral for more than you bargained for if you know what I mean.

I know the Ivory Soap cure for muscle cramps doesn't make sense but it
does work. People's Pharmacy even acknowledged this phenomena. I play
cards once a week and when trying to shuffle the cards I can suddenly have
very painful muscle spasms in my hands. I now carry 1/2 bar of Ivory in my
purse, I grab it and relief is immediate. Amazing!

WOW!!!!

everybody has seen good results with the soap. So it's still on my bed and it's not going anywhere!!!

lol

Yeah, we're talking Ivory (although some have used Dove).

I don't think anti-bacterial soap is the same.

I'm sticking to my plain old Ivory soap.

Here's to no more muscle spasms.

Melody