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