I'm an RN and I would never presume I had the knowledge base to diagnose someone. However, I didn't read too much into the reply suggesting to someone that they had a certain diagnosis. It could be taken as a suggestion by the OP. The dr has to officially diagnose it anyway.

Maybe the person presenting the info to their doctor might lead him in a new direction. I'm still recovering from my self induced withdrawal from Lyrica since I left my morning dose out for 4 days. Just wasn't thinkin'. I feel like my whole body is one big OWWWW.

I know what you mean. One thing that we all do is tell people what kind of side effects a med gives us. That is good.... sometimes it might save us a lot of trouble, but what if we don't even give the medicine a chance because we hear something negative about it?

I think we all know that opinions are being presented here. We know that no one here is a doctor and hasn't examined us so they can't know what is wrong with us.

If someone sees someone else present misinformation as fact, don't you think that we have an obligation to speak that out?

Telling someone to get their B12 level tested or vitamin D level tested is OK in my book.

I remember someone told me that a certain medicine made it hard for them to be a passenger in a car, that it felt like cars were flying at them. Well, that helped me because I feel that way too.
So it is a fine line.
I look at it as gathering information and the more the better.
To me, support is mainly knowing people care and are willing to type a response, no matter what they say as long as it is kind and helpful.
I don't really expect anyone to solve my problems but having a bunch of people tell me, "it's ok that you eat 4 bowls of cereal a day because I do too", helps me know it's not just me.

I agree that just throwing out medical information probably isn't a good thing to do as we never know how it will be received or taken.

Well, I am not saying exactly what I want either, Jan but this is a good post and hopefully we will get some more imput.

Oh, I have noticed that most people want to say other people have what they have. Like every time someone says their muscles are pulling or they hurt all over I think..... they have myofascial pain like me.
But really, many of us share the same types of pain but have different diagnoses.

JC, good post IMHO, which i've been using more and more. i try to always put in what my body's reaction to anything was and that we all react differently, but i'm sure i've been less than supportive at times.

i like feeling that i can bring up general life issues and to have discussions here, not arguments or attacks, but writing online is a hard way to show emotional with body or facial expressions.

JC--- I agree with you in that we need to be more careful before we give out "facts" about medicine or anything else for that matter. What I do is tell the person my experiences with either the medical profession or the drugs they ask about. I don't pretendd to have all answers because I'm basically here to ask questions most of the time.

I think we should use this forum to lend support and experiences to eachother. For facts on something why don't we direct them to a website if there is one? Maybe some things need to be answered by their doctor(s). Just my opinion.

I would like t say that I appreciate the help and guidance I have received through reading other people's posts and questions that I have asked. I know some people on this site have been through or are going through more than me and I'm glad that some people on here can help them. Thanks to everyone and tell us what you think!

I agree that we are not doctor's and should not come off a such. Honestly, it gets my back up when someone plays doctor with me. I'm here for support, not a lecture. I do truly appreciate empathy and the sharing of personal knowledge of the condition or situation.

I think the amount of information I share depends on how well I know the OP. Not because I only want to share detailed information with friends but because I feel like I know they won't take what I'm saying as gospel:-) My greatest fear is sharing information that might change the way a person may think about a med or a procedure. Just because I had zero success with something means nothing, it could change everything for another person.

I've sent detailed information about Fentanyl patches and my personal experiences with the different dosages and brands. But this was to someone I knew would draw her own conclusions based on her own experiences as well as follow her doctors recommendations.

I only claim to know me.....know my reactions......my experiences.

That being said.....I wouldn't have a problem saying to a new member searching for relief that I had good success with Magnesium supplements. Or that heating pads and hot baths are my new best friends. Or that I'm more likely to get better pain relief with Motrin over Tylenol.

While I limit what kind of medical information to share.....I do think that humor, hugs, and games of all sorts are great ways of giving and receiving support.

Hugs!
Deb

i have seen on a lot of different boards the disclaimer in all posts than no one can diagnose or treat you other than your own doctor, please do not seek or offer medical advice here.. blah, blah.. small print.

i think that's fine. however i think most of us, when we try to offer med advice mean well. i know i've done it before and been totally wrong. sandy was on nycenta and my father had had a bugger of a time and i told her all about it. well, sandy got through that hard part and it's now an effective part of her treatment. glad she didn't listen to me and gave the med a chance.

it's hard, when we feel like we've gone through "the EXACT same thing!!" as someone, not to want to share our results, good and bad.

i think, jan, it falls on us to all be vigilant in what we listen to, consider the source and always listen to our doctors FIRST and foremost.

i know, in my case, i've learned a lot about my condition, possible treatments and gained a lot of knowledge from this site in addition to support.

i'm sure you can smell this coming jan, but i'm all for as much freedom of speech and information as we can have here. i always believe that the responsibility is on the user of the forum to have common sense.

if someone tells you they cured their MS with dandelion leaves... um.. hey- let them know that's great. i think we know that even the people here who have medical backgrounds aren't trying to practice medicine here, at least not anymore...
('member CC?)

basically i think and hope we're all smart enough to know that this isn't a medical advice forum, even though it does come up.

i for one, appreciate hearing what worked for people, what their experiences have led them to try, what they recommend... all of that. i would have never learned about peppermint tea for constipation if no one was aloud to advise. btw, it really works and i endorse it!!

lol.

good point though jan.
i just hope that most people would speak to their doctor about anything they hear here.

Some great points are being made here.

Thanks, you guys.
I'm not going to respond to each poster as I sometimes will when it's a personal issue.
I like hearing all thoughts and opinions on an open topic like this.
Hugs.....jc

I'm with Brokenyolk, in that I am a believer in that you can never have enough information. Then it is up to the person to decide what is for them. There is a good saying I've heard dealing with what people say, "take what you like and leave the rest!"

hi,
when i was searching for a support group i was searching for a group of people that are supportive, and helpful.. i understand that people experience things differently, and feel different on different meds..so i always take everything with a grain of salt, ... but for me, i have received a great deal of support in all aspects of my life, and thats why i keep coming back for...
i only hope i give more than i receive, and thats what makes this great!! i get a chance to be myself, and share my experiences too...
~stinke~

Oh..I hope some who have already replied come back and read through..
'Cause..I did want to ask, also..
If you see something presented as fact, that you know not to be..
What do you think the best way to handle that is.?
Hugs.....jc

hey jancam nice questions on open forum....for me I need support of things like daily check in breakfast we gather together to start our day and share where we are headed today...that is so nice...other side is good night hope you enjoyed your day here is what mine was like....

I do not come here for medical knowledge or advice...I am responsible for my half of my medical care and the doctor the other half....but if someone suggests stuff it is ok to me...

if someone presented as fact something I knew to be false I guess in open forum it could lead to a flame war...I say this...damn it I say it and I mean it...nope idiot you don't know squat....ect...I would hate to see that...wars of any words are no fun...we went thru an appology period week or so ago where touchy things touched others....

I hate to hurt and I hate to be hurt basically I think kindness is good and meanness is bad....and if I cannot say nice things I should say nothing....laughter is good medicine too....

ok time to go back and edit myself to break it into readable segments...remember that discussion? well I did and I know it helps to do that....some forget but hey!

Jan as far as how to react when someone tell someone something as a fact that 'I' know it's not.....

That's a tough one....my person philosophy is be responsible for my own actions. But I suppose if I felt that someone may have offered harmful advice.....I'd PM the person I was worried might follow the advice.

I can't express my opinion any better than brokenyolk and Boxerlover said it. I think the info we can collect the better the decisions we can make for ourselves. And I am not saying that anyone should disregard a doctor that is truly helping them, but I think we need to remember that there are people, including myself, who come here seeking information of sorts because they have not been fortunate enough yet to have found the right doc.

I learned so much here from all of you and I believe I have put this information to practical good sense in order to help myself boh with and without the medical profession.

Any knowledge, ideas, etc shared here need to be weigheed out by each reader to determine if they think it will be beneficial for them, but not to post any thing of this nature would perpetuate ignorance and uneeded suffering, as well as, help support the bad docs out there because people would never know not to go to them anymore.

This is not about boycotting the medical profession or anyone here trying to be a doc when they are not. This is about easing the pain and suffering of a part of humanity, chronic pain sufferers, who are being cast aside by society by so many.

Just my opinion. Take it or leave it just like any other post here at DS.

P.S. Information is support. Knowing/knowledge is empowerment.