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MelodyL
11-22-2008, 11:33 AM
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




cyclelops
11-22-2008, 12:50 PM
Soap under the sheet???

MelodyL
11-22-2008, 01:59 PM
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/showthread.php?t=54740&highlight=soap+sheets

mrsD
11-22-2008, 03:10 PM
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.

MelodyL
11-22-2008, 03:12 PM
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

Vowel Lady
11-22-2008, 03:53 PM
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.

DanP
11-22-2008, 11:35 PM
I've been doing the Dove bar of soap between the bottom sheet and the mattress cover for about 30 days now. I place it roughly between my knees and calfs. Use to have terribly painful cramps in my legs a couple times per week but can honestly report that's happened only one time since I first put a bar of Dove soap in my bed. When I first heard about this I thought the idea was nutty - I still do, but, damnit, it's working for me and I don't argue too strongly with success. You don't have to put an ad in the paper to announce to your neighbors what your doing but if you have leg cramps - just try it. If it doesn't work then fuhgeddabudit. If it does work then hooray for you.

Incidently, I've also tried the wintergreen rubbing alcohol with 12 regular aspirin (325mg each) dissolved in it. (I also add in some baby oil) Does a pretty good job of relieving some of the pins & needles and stinging that's associated with PN. Doesn't cure anything but helps in getting to sleep sometimes. Same can be said about the tube of Vicks VapoRub...the greaseless cream style. Just rub it on your legs...nothing ventured nothing gained. Inexpensive too.

The one thing these remedies have taught me is: "if ya ain't tried it - don't knock it." :cool:

JRC000
11-23-2008, 12:24 AM
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!

MelodyL
11-23-2008, 09:02 AM
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

MelodyL
11-23-2008, 09:03 AM
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.

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

jannaw
11-23-2008, 11:03 AM
My husband has horrible leg cramps from his rheumatoid, I am going to do this and not tell him, I also get bad stiff necks. I love this place, who woulda thunk it? A couple of bucksk for two bars of soap and night time relief!

MelodyL
11-23-2008, 11:37 AM
My husband has horrible leg cramps from his rheumatoid, I am going to do this and not tell him, I also get bad stiff necks. I love this place, who woulda thunk it? A couple of bucksk for two bars of soap and night time relief!



Let us know what happens.

jannaw
11-24-2008, 06:18 PM
I have my ivory, tonights the night!
Does anyone out there have tingling under their toes and fingernails, this starts every evening and I have to tuck my hands under my thighs to stop it. The toes I have my chenille socks and it tones it down somewhat, I've had to wear socks to bed for the last thirty years b/c of this, is it possilbe my neuropathy crept up on me incredibly slow over the years? What a strange condition we all have to deal with.

Monica de Lara
11-26-2008, 12:02 PM
I am going to try the soap too!

MelodyL
11-26-2008, 01:28 PM
I am going to try the soap too!

Alan saw his primary care physician last week (he adores him).

Guess what happened when he told him about muscle spasms and Ivory Soap.

the doctor said "really??" and then Alan said 'If it's good enough for the Mayo Clinic then it's good enough for me".

The doctor said he would try it.

Then Alan said: "Then you owe me a consultation fee" and they both laughed their heads off. Alan had brought photos of the both of us when we were A LOT BIGGER.

Alan weighed over 300 lbs in the photo. His doctor said "oh my god, this is you, you actually weighed over 300 lbs????".

The doctor IS VERY PLEASED WITH HIM.

Alan got weighed and is now 205. He used to be thinner after his cardiac rehab and when he had to lose weight.

But so far, he's settled on 205 and for him at his age, he's fine.

Thank god, A POSITIVE DOCTOR VISIT!!!

lol

We now await the appointment for his MRI of his lumbar region.

mel