Went to the PN Support Group meeting last night
 

Hi All.

Alan and I went into NYC to the CBS building for our monthly PN Support Group Meeting. The law firm that gives us the room REALLY went all out with the table settings. They had cookies, hot coffee, beverages, half and half, milk, set-ups. VERY NICELY DONE

I brought a carrot cake that I baked (couldn't touch it because I'm diabetic), and others brought goodies too.

We had a really good turnout. About 20 people attended. That's a good meeting. We went all around the room and everyone spoke about their experiences with neuropathy and what worked and what didn't work.

I brought my balance board and demonstrated how I balance on it. And given the fact that I am going through a bout of sciatica, well, let me tell you, I GIVE MYSELF SOME CREDIT. lol

Actually, balancing on a balance board makes you use your muscles and it actually feels good. With sciatica you have to MOVE. I mean, you have to know what you are doing when you stretch, etc, but if you just sit, THEN YOU CAN'T MOVE.

And everybody there had a story to tell about their experience last week when the temperature dropped from 89 to 35 overnight. Golly!!!! everyone had a story.

And last night in NYC it was 71 degrees. Beautiful!!!

This morning it was in the 40's. HELLO!!!!! BACK PAIN!!!

Yesterday morning, I purchased a roll on version of something that is made by Bio-freeze. It's called Perform. It's not cheap either.

I have Bio-freeze in the house and Alan uses it for his neuropathy but I tried it for my sciatica (as well as various non prescription pain patches, and rubs, etc.).

Well, you would have gotten a kick out of me standing up in front of 20 people asking "how many people here have Sciatica?" and all the hands SHOT UP.

I then took out my new bottle of Perform, passed it around so all could see and explained that I had just started using it AND IT MADE A BIG DIFFERENCE.

There's no miracle here but let me tell you, compared to all the other stuff I've used, this stuff is GREAT.

I have tried to go online to see how this is different from Biofreeze but can't find the information.

They both work by cooling the nerves, and this was has (under active ingredients).

NATURAL MENTHOL USP 3.1% - Purpose - Cooling Pain relief.

I don't know how this works, and I don't care.

I'm using it. And I'm functioning better.

So at the meeting, we had people who developed neuropathy from simply taking an anti-biotic. One girl (she was in such pain), had previously had a UTI, been prescribed Bactrim, and on the second pill, her hands got tingly, numb, then her feet, and it progressed to her groin. She was in a lot of pain.

She is allergic to D-Mannose (the stuff I took when I had a UTI, it's in Cranberries), but she IS able to take cranberry pills and she drinks lots of water. The both of us were drinking water all night long.

Another nice gentleman had neuropathy and he remembered that he was given Bactrim from his doctor after he developed MRSA from his massage therapist. he got it on his back during a massage. (Amazing what you hear at these meetings).

I told him about this site. Hope he comes here and visit.

So he now will look up Bactrim and Neuropathy, and perhaps discuss it with his physician.

We all spoke about balance, good balance, bad balance, IVIG treatments, (the girl with the UTI excitedly looked at me and said "Oh, would IVIG stop my pain?" and I had to be brutally honest and say to her "Actually, not really, Alan went on IVIG because he thought it would help his pain and then the doctor explained that it's an immune booster and helps with balance but it not directly linked to pain relief.

So we continue to attend these meetings, try and laugh and share stories and information. We have all kinds of people with various types of neuropathies from many different reasons. We learn a great deal from these meetings.

The next meeting is on May 20th at the CBS building.

Hope some of you can attend.

Take care,

Melody

Perform? Looks similar to Biofreeze to me:

http://www.americarx.com/Products/34376.html

http://www.drugs.com/pdr/biofreeze-p...eving-gel.html

I guess they hope to use the name Biofreeze for professionals only?

do you always have quest speakers also? I think its a great idea to have people introduce themselves and talk about their PN and what has worked or hasnt for them, instead of just going to listen to a talk.

Perform
 

So essentially I've been punk'd. I bought Bio-Freeze under another name. Because on the bottle it says "made by the makers of Bio-Freeze"

Can they do this legally?

I now have (in my house). Bio-Freeze, Peform, Tiger Balm, Lidoderm Patches (which I put on my sciatica the other day, and it did NOTHING, and it would not stick to my back so two patches came off in one hour), I also have Salonpas, I also have .....WELL, I HAVE RUBS, AND POTIONS, AND LOTIONS, ETC.

Right now, I smell like a 100 year old grandmother. Actually Alan is in better condition than me today. I have degenerative joint disease and because of the weather drop, well I'm not able to go to a friend's house this evening. When I try and explain. "I have arthritis". she goes 'well, I'm 77 years old and I'm fine". I laughed my head off.

She's right. She's fine.

The day someone comes out with a nanobot, or a nano SOMETHING, that we can inject into our bodies, and all the little nano thingees can go to town inside our bodies and cure what ails us, WELL, BELIEVE ME, I'M SIGNING UP.

And stress doesn't make ALL THIS ANY EASIER.

Talking about stress was part of the meeting last night. The moderator asked us 'Does stress affect your neuropathy, your bodies, etc?." and all the hands went up and everyone started jabbering away, and the moderator said "Well, it makes sense because if a HEALTHY PERSON IS UNDER STRESS, and it affects their immune system, what do you think stress DOES TO US?"

Made a whole lot of sense.

I would like to retire to a tropical aisle and swim with the dolphins.

That would be great.

ME AND FLIPPER!!

lol

Nah, we don't always have guest speakers, once in a while we get them to appear. Steve takes care of all that. He recruits doctors, and nurses, and IVIG people, etc, and they come and show slideshows on pain, and then we all have discussions.

I remember (about 2 years ago), there was this neurologist there. She sat at the end of the table. I asked her "I have a question for you, how come I asked ALL of my husband's physicians, specialists, neurologists, ALL OF THEM, "Is there a genetic link between Guillian Bare Syndrome and CIDP, and ALL OF THEM POO POO'd me and said 'no, there's no connection", but now when you go on a CIDP forum, it says "A form of Guillian Barre", NOW HOW CAN THAT BE???

She replied "well, we didn't know much about neuropathy till recently, we learn more every day" Back then, they said that Alan had CIDP, and then they said "no you don't have CIDP, so now it's back to being idiopathic poly neuropathy", (which identifies many of the people at the meeting), they have no clue either.

Then I asked the neurologist "would you put down the theory that Methyl B-12 can help neuropathy by healing the nerves BECAUSE ALL OF MY HUSBAND'S POO POO'd that also".

Her reply: "I would NEVER be that arrogant as to tell you that Methyl B-12 would not work, I am HERE TO LEARN FROM ALL OF YOU".

Do you hear this. They come to the meeting to learn from US.

And Steve had a neurologist call him up (he's not a doctor by the way), so the neurologist calls him up and says "I have a 6 year old child with neuropathy, and she's presenting with this and with that", and Steve interrupts him with "Wait a minute, I'm not a doctor",

That didn't matter. Steve KNOWS A LOT ABOUT NEUROPATHY. More so than many physicians I believe.

And the kicker was when he said "Do you know how many people have MS in the United States?" and no one knew" He said "400,000", as opposed to 20 million people suffering from Neuropathy. Yet the MS society has Montel Williams as their spokesperson, and the Neuropathy Association doesn't have anybody to speak for them. He has contacted Dr. Oz who did not respond.

I myself wrote to Oprah, and Dr. Phil as did others, but no one responded.

Someone said "Maybe they feel that Neuropathy by itself is NOT a disorder but it's a RESULT of having SOMETHING".

We covered a lot of territory at this meeting.

As we left, some newcomers walked over to me and said "oh, that was a good meeting, can't wait for the next one".

And riding home on the Access-a-ride, we shared the ride with a blind man with a guide dog. I asked the nice gentleman, "What is the dog's name?" and he laughed and said "Hickory".

Immediately, all the people on the Access a ride started singing "Hickory Dickory dock, the mouse ran up the clock".

You meet the nicest people on the Access-a-ride.

melody

Well, you don't have MAGNETS! LOLOL

See the thread on the first page here! Might work for you.

Thanks for the info Mrs. D. I'll look it up.

Oh, I forgot to mention what happened when we left the meeting. I had baked a very lovely carrot cake (these members usually get my muffins, but I felt industrious, so I made a carrot cake).

I had bought a cake carrier (with nice handle and locking mechanism) in the .99 cents store (don't do that, take it from me). When you pay cheap, you get cheap.

Because so many people brought so much cakes and cookies (in addition to the set-up that the law office provided us for the meeting), I took home the rest of the carrot cake.

So there was Melody, outside the CBS Building last night at 8 p.m. waiting for the Access a ride with Alan, and the whole cake carrier falls on the floor (ALONG WITH MY CAKE). The access a ride pulls up, I'm staring at the cake and cake carrier on the pavement, and thankfully, one of the other members came over and said "melody, you get on the bus, I'll throw this away"

So there went my new cake carrier and my beautiful carrot cake.

You should have seen the look on Alan's face. He said "next time, bring muffins, they are lighter".

lol lol lol

Aw, Mel...so sorry about your cake! I would have taken a dive to get my body between the cake and the pavement!

Thanks for your reports of the monthly meetings. Sure wish we'd get something like that going here. Maybe I just have to thnk harder about what I could do to get enough people who are interested together. I know a few people who are on boards of foundations who could tell me what I need to do to get money.

Maybe there IS a support group in your area? Go to the Neuropathy Association home page and click on where it says support group. I think they ask for your zip code or something like that. Just poke around.

You may actually find a group not to far from you. Wouldn't that be cool?

Oh, I solved the CAKE CARRIER FIASCO.

I went to my local retail store which SELLS EVERYTHING. And not the cheap stuff. I bought this nice cake carrier with a locking mechanism that twists and it LOCKS. Can't fall apart.

But I didn't like the top of it. The handle part. I need a handle that I can slip my fingers through, not some plastic holding thingee.

So I know me. I'm like Macguyver. If I can't find what I want, I MAKE WHAT I WANT.

So I bought the cake carrier for $8.99. Took it home. took one of my old knives that I used for crafting, put it in the flame of my stove, and stuck it through the top thingee. I made MY OWN KIND OF HANDLE.

Works perfectly. So now I have brand new cake carrier that won't break apart.

For $8.99

lol lol lol

Next time. BOSTON CREAM PIE!!!!

Boston Cream Pie - One of my favorites
 

Might be worth a trip to NYC. :)

Does Perform or BioFreeze work for stiff hands? He has no pain, just extreme stiffness, and is miserable. It's hard to work when you are so stiff. Any suggestions???

I was just kidding about the Boston Cream Pie. I'm diabetic and some of the members at the meeting are too.

I can just see their faces if I bring in a Boston Cream Pie. I can just see my husband's face. That pie would be long gone in two minutes.

What I AM good at is muffins. I make a peanut butter, banana, chocolate chip muffin that people go gaga over. I use splenda/brown sugar and egg substitute. And since this only once a month, I make a nice batch for everybody.

But this thing about others bringing stuff too, well, this just happened. The other day someone brought a box of cookies, and this other man loves to bake so he brings a big bundt cake. It's not sugar free.

But even with sugar free stuff I get sick if it has any sorbitol in it. Jeez that stuff is horrible.

So I use a product called IDEAL, sometimes. It takes just like sugar and it bakes like a dream.

Look at me at my age, learning to bake and make cake carriers.

I wonder what I'll invent next?

So if you are near NY next month, drop in.

YOU MIGHT HAVE MUFFINS!!!!!

lol

I bought each and every one of my Bio-Freeze at all of my local drug stores. Including CVS, and the little generic drug stores right round the corner. They have all kinds of Bio-Freeze, and next to it they have the knock of which is called Freeze It.

Now I don't know if Perform is the same as Bio-Freeze, but lately, since I bought the Perform, WELL, I'M PERFORMING ALL MY DUTIES, going shopping, MOVING MY BODY.

So I'll perform until I can't get PERFORM any more.

lol lol lol

I put the ingredients up here for both. Both Perform and Biofreeze have 3.5% menthol. They don't give the camphor or Ilex amounts anyway.

And yes, it works for the hands too. After applying mine I work the left over gel into my hands well. I use the gel which has to be done with the hands, not a roll on. I rub it on my wrists too for my carpal tunnel.

There are online places that sell Biofreeze at $6.50 a tube, but you have to buy 3 and pay a little shipping.

When I had my PT the therapist used Biofreeze 1/2 and 1/2 with the ultrasound gel. She suggested I use it at home too. I bought my first tube there for $10.00 3 yrs ago.

Good job, Mel! It's all about the cake!:D

No, there aren't any groups near Pittsburgh. They're in the area around Tikrit and Baghdad and east, west, south and north somewhat...er, I mean Erie, central PA and to the east near Philly.

Great Stuff
 

Since I couldn't find BioFreeze at several stores around here, I checked iHerb.
They didn't have it either, nor did they have Perform, but they did have "Great Stuff" for $6.XX. I ordered some since I was ordering supplements anyway and will add it to my ever growiing arsenal of pain relievers. The box says the active ingredients: Wintergreen Oil 34% (Methyl Salicylate), Menthol 26%, Camphor 5%, with inactive ingredients Eucalyptus Oil, Jojoba Oil and Lavender Oil. I'll try it tonight. Joan

My husband went to see his podiatrist today for his usual checkup, nails, toes, etc. He comes home, he's laying on the couch and I say "how are your feet?" and he says;

"I'm a Leprechaun"

I said "you're a WHAT??"

He says: "you heard me, I'm a Leprechaun".

I said: "Why are you a Leprechaun?"

He says: "Because I have green toes".

I said "WHAT???" and I pull off his socks and sure enough he has green nails on his toes.

I said "why on earth do you have green toes?"

He said "The doctor said it's all the stuff I put on my toes to stop the neuropathy".

So now my husband is a Leprechaun.

Good Lord!!

lol lol lol
P.S. He still has a slight foot ulcer but it's healing.
But he's green!!!!

Be careful with that, please. That is a very high amount of methyl salicylate, which may be overabsorbed in some people.
Only use it on small areas. Don't get it near the eyes either.
It has ALOT of menthol in it!

I'll be interested to know how it works, however.

Report on "Great Stuff"
 

Last night I was fumbling around trying to get the tube of "Great Stuff" out of the packaging when my husband came into the bedroom and said he'd do it. (He also had trouble but did achieve the goal.) The fumes from the "stuff" nearly knocked us over. My first clue should have been the fact that iHerb had put the whole thing in a plastic bag.

He said he'd try it on his shoulder--he usually rubs ActivOn on his shoulder when he goes to bed. I didn't want to use it cuz of the odor, and we both had a hard time going to sleep until it dissipated a bit. It was also runny, and he decided to go back to ActivOn; however, he felt no pain, (but he doesn't with ActivOn either). Joan