I was on a Neuropathy Facebook page
 

And would you believe I almost got booted off because I was talking about Methyl B-12.

There are quite a few FB pages on neuropathy. I didn't know this. I was just looking around on FB. So I stumbled upon one, I asked to join, I was accepted and ALL THESE PEOPLE were in so much pain, all of them were on various things, like Neurontin and other opiates and they talk about the various creams they all have been trying (kind of like this forum) but with LOTS OF PEOPLE POSTING BACK AND FORTH all day long. Some people who come here were also on that FB page.

So I was reading the various postings and you can reply but selecting the COMMENT option.

so I just told my story about Methyl B-12 and I answered some questions and people actually thanked me for the information and were going to try it. I made a point of saying "google Methyl b-12 and Neuropathy" before you buy anything.

There was also a discussion about medical marijuana and people were indicating that the opiates they were on weren't doing anything and I said "well, they really don't help with nerve pain, that's why, if it's legal in your state, well some people find that MM helps"

It was a big discussion, for about 3 days, LOTS of people posting and people even friended me on FB.

Well, the other day I get a message from the person who created the group on FB telling me to STOP PUSHING METHYL B-12 and stop badmouthing doctors (all I said was that Doctors practice medicine and they don't practice nutrition" THAT'S ALL I SAID.

This person told me I better stop pushing Methyl B-12 on people, that she read the warnings and it's dangerous, and that I should not talk about medical marijuana and stop bad mouthing doctors, that doctors really do the best they can do and then she writes that the first choice of treatment for neuropathy should always be Anti-depressants and anti seizure medications. Then she said "If you continue to post info about Methyl B-12, I will delete you from the group". I then left the group of my own volition.

I messaged her back that she really didn't know what she was talking about but she's not going to hear from me anymore.

I will never DO THAT AGAIN.

There were so many people in pain, I can't tell you.

What the heck is wrong with people anyway. They kill you for talking about Methyl B-12.

And you're going to love this

One of the people on that FB page who read about what I wrote about Methyl b-12 and Neuropathy, actually wrote to me saying "I looked it up on the internet, found all the information very helpful"

She then went to her pharmacy and asked the pharmacist "Do you carry Methylcobalimin??"

He said 'What's that?" She explained to him what it was.

He said "never heard of it, let me look in my computer"

He then looks at her and says "It doesn't exist"

She replied "Oh really, I found it on the internet", and she walked out of the drug store.


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melody

Maybe most pharmacists don't study supplements & natural stuff like our mrsD:rolleyes:

Myabe that FB person was a Dr :rolleyes: LOL.....

But really some people have no interest in any other way to manage health - they only go by what a Dr tells them & they don't look for alternatives.

Hi Melody-

Maybe you should start your own face book group about this. Then you do not have to worry about what you post.

I agree with RBWalton!!!!
 

I agree Melody! I would be your friend on FB if you did that! Heck, I would be your friend on Facebook anyway! My Facebook name is Terri Dobkins. Anyone on this Neuropathy page who wants to be my friend on Facebook is MORE than welcome to freind me! I am friends with some already. :winky:

Hi, I just friended you on FB. I HOPE IT'S YOU. lol

And I absolutely tried to create my own Neuropathy Group. I'm still learning how to do this. I followed all the steps but got nowhere.

But I joined another neuopathy group on FB. Let's see where THAT takes me.

lol

Melody

i dont think i would last too long on that facebook page or group. i never even thought of facebook for that actually. maybe someday ill enter the 21 st century.

Hi Melody,
I was on the FB site the day you were on, I follow about 5 of these sites plus a couple in Yahoo groups. I seldom post as I read a lot of comments being posted, 1 thing I do is suggest this forum stating the amount of documentation pertaining to PN that this site possesses. There seems to be a who's in control issue on these sites and I don't follow any suggestions thats not documented. I guess it serves its purpose by letting folks vent about their pain issues which seems to be the main topic. I hope no one gets hurt as its possible some disinformation appears. Anyway you might find some benefit by hosting a site. Good Luck

I agree with stagger--
 

--in that a lot of these Facebook sites for causes and such (not just for neuropathy) seem to be set up so that they become the mouthpiece or organ of individuals pushing a particular point of view, and such individuals often do have control issues and are not tolerant of alternative viewpoints.

I do think that one way in which Neurotalk is different is that we do try, to the extent we are able, to document our own individual experiences with scientific evidence, and over time we have built up quite a database of information; certainly the knowledge base rivals any other website and the level of expertise rivals that of any university medical center. And I think Dr. John, the moderators, and other experts do a very good job of "curating"--allowing discussion to be wide-ranging and exercising reasoned judgment as to what constitutes greater or lesser evidence (not an easy job).

Facebook? No thanks.

Well, I just got blasted again. I went to a completely different Neuropathy Page on FB. I posted a message saying how Methyl B-12 worked for ME. I was very careful. First I said "google Methyl B-12 and neuropathy", read the info and decide if you might be interested. I then explained my experience with it.

Well, I just got a good blasting by some guy who said "I would appreciate it if you would NOT give people false hope, blah blah, and stop pushing YOUR supplement".

You don't want to know what I told him.

And even if I started my own group, this guy would probably come along and post the same message.

You can't win. I now know this.

I'll stop opening my mouth.

But, on another note, two people did thank me, and went to Puritans and got the Methyl B-12.

Hope it helps THEM.!!

lol

Melody

There's no depth on FB. I too have looked at other sites concerning health and I find them lacking on many levels.

They say there's no fanatic like a convert, and I guess that's true. There are folks here who have their "favorite" meds/supplements/causes etc. (and I'm no different). I've been taking Methyl B-12 for months, and I can't say I've noticed any difference. OTOH, I started on 100 mg. R-Lipoic Acid, and within 48 hrs, folks, I'M A BELIEVER!!! I've also questioned some things and been called on the carpet for that. (Where's the shrugging emoticon?)

On the flipside, I s'poze there's a lot of sour grapes from folks who're frustrated by things that are working for others, but not for them.

I'd wax some more philosophicals, but I'm under the (time) gun for an appt. today....

Doc

Facebook? Two - Faced - no thanks.
Never have - don't belong-never will.
I don't 'TWITTER' either. Same thing.
These have been touted as THE social networking
must have, must be.
I prefer to stay under the radar in most instances.
Not completely, because I'm on theses pages, but not
in a place I consider to be too much like a crowded elevator
or a squeezed in, rock concert, melee.
I'm more sedate than that.

some of those face book sites might be set up by those who have a particular product or service that they might wish to steer people to. For example laser light therapy, vitamins, nerve release surgery etc. along you come with something effective and cheap and just doesnt fit into their agenda. other sites might just be suffering from the page owner or moderator having small fish in a tiny pond syndrome.

Oh, I just had to write and tell you what happened one hour ago. We were coming back from Dr. Fred and they took more blood.

As we are on our way home, I am walking beside Alan (who uses one of those seated walker things) and he said "I saw someone sitting in one of these walkers and someone was actually wheeling them". Of course, (stupid me) said "oh really?, why not try it"??

So he's facing me, sitting in the walker, I start wheeling him, it's working out just fine and BOOM, in one second flat, the walker gets caught on some crack in the sidewalk, Alan goes flying, I go flying on top of Alan and we're laying there and he's moaning and there's a guy standing right next to us, who watched the whole thing unfold and just looked at me, and walked away.

HE WALKED AWAY and walked into a store.

I got up, and 3 people rushed over and helped me get Alan and made sure all was okay.

We got home, I put Tiger Balm all over his back and shoulder blades and he seems to be just fine.

But the guy WALKED AWAY.

How can someone just do that?

OMG!!!

Melody

it doesnt surprise me. one time i was walking and didnt see a pothole and twisted and broke my ankle. so im laying there for a few minutes, then i had to hobble home over a mile away on a broken ankle. do you think anyone stopped and even offered to call someone for me...no.....but i still help people when i can and have saved a few with cpr that i ran accross in the street.

on an off topic note i just found out something is seriously wrong with my muscle enzymes numbers which were tested because my legs were locking up. of course they cant tell me over the phone and wont give me a copy until i see the doctor on wednesday. i looked up what it might mean on line and i dont think i should have.....ha!

Hi,
I am the admin. of Support for Neuropathy and I did not tell you that I might delete you for talking about it. What I was concerned about was that you were pushing it on people. You told someone to go get it immediately. People always need to contact their doctor before taking any supplements.

*edit*

The four wheeled walkers with a seat are called rollators. They specifically tell you not to sit in them and be wheeled by someone else because the front wheels are not set up to do that and they can and do break.

I am sorry to hear about your troubles and it is too bad that people just do not want to help. But remember, the rollators are not to be sat on and pushed by another person. They only are an aid to walk and to sit if needed.

However, if you have a rollator/transport one, that is different and it is made for a person to sit and be pushed or to push it yourself and sit when you want. That type has a place to put your feet on so that they are not hanging. Just trying to help.

I can guarantee you that this will NEVER happen again. I guess if Alan weighed 120 lbs, that might not have happened.

Oh brother, did we get lucky or what? He could have broken his neck. Or mine!!

Never again.

Melody

Well, I certainly hope you clear up this muscle enzyme thing. Good lord, we now have to worry about our muscle enzyme.

On a funny note (not really funny but I think it's humerous), we just had returned from seeing Alan's doctor (right before we fell) and Alan got new blood work done. I got the report from his last blood test (Alan had prostatitis) and had elevated this and that, I gather because he had an infection that all these results get elevated??

Who knows. He's fine now and we'll get the results of this latest blood work, well, we'll fine out on Tuesday.

It makes one NOT want to go for blood tests.

lol
Melody

Melody, I know how certain support groups on FB can be troublesome. But I am going to have to go with what gardening1 said. So, I will just give you an example. I belonged to the Occipital Neuralgia support group on there at one time. But the opposite problem seemed to hold true. Instead of looking for or at the causes a LOT of them were touting Vitamins and what not. And, well, some of the folks lived in other countries so they issues with medical care anyway. Anyway, I was made an Admin at one point or rather the owner asked to be one. The problem is as Gardening1 stated, a lot of these holistic or natural remedies CAN interfere with medications that people take. I am not saying Vitamin B is one of them...just saying that sometimes there is a lot of bad information and/or someone might run out and grab herbs or what not without really doing the research and/or checking with their doctor first. In any case, I asked to be removed from being an Admin; sometimes people just don't want to listen. And I also think, at times, it is just a huge vent session, which is okay I guess. Anyway, there is a small fiber neuropathy group there that is pretty good. Don't sweat it though...there are some good people in various groups. :)

just here briefly on hubby's computer.

I have to comment about FB and other social media.

Mel, you have to remember that people don't really take to
new ideas...even tho this is not a "new Idea" to us.

I post here with documentation so that anyone who cares to read and listen may profit if they choose. But no one can force anyone to do anything... esp on the internet.

I personally have had great personal success on the internet for myself, so I tend to be positive about it. But the sad fact remains that many people still defer to their doctors who may or may not be up to date on all the research from 1999 on.
Here on NT...we have active Google strings bringing people here...if they choose to that is. I tend to just do my thing, find the data, and hope people will read and understand it.
It is free after all... perhaps if I charged doctor's rates, it will lend credence... but certainly being free of charge is not going to encourage trust in others. That is why I put LINKS to the proof. Not all neuropathies will respond the B12 or any other thing. There are so many causes, they would have to be examined carefully.

So That is why you won't find ME on FB. If people are earnest in finding other points of view they will find us here from Google links.

Great to see you mrsD :) and hope you are having a wonderful vacation :hug:

I am going to have to lock the thread (lol nothing you said mrsD ;) ) and really nothing anyone else has specifically said.....
but
in the past we have closed threads that bring problems being encountered at other forums over here.
We just don't want to have the peace here disrupted by whatever has happened elsewhere :)



sooooo
what happens on facebook...stays on facebook! and onward and forward here :cool: