Confusion in a discussion I DON'T need, tyvm! I have a hard enough time getting through a discussion that isn't confusing! :rolleyes:

As long as everyone in the forum isn't stuffed into the nutshell of posting incorrectly as Thelma mentioned.

When I first came to OBT, after a car accident, I stumbled into the Headache/Migraine group and said, "Hi, I'm Nancy. I had a car accident, head inury, chronic head pain...." blah blah blah. And they were all kind enough to introduce themselves and then start in on their own situations.

I took those situations, researched, culled them out. Stumbled into the Depression room and did the same thing. Were it not for all of those people describing their own situations, what worked for them and what didn't, what they had done and what they hadn't done, I don't know what I'd have done.

I've had so many doctors tell me..."Don't go reading that stuff, you'll just start having a bunch of symptoms you don't have, and it's only those people's opinions!"

Say what, doc?!? Oh contrare.

I may still be laying at the bottom of a lake were it not for information I gleened from these groups. Had I not known and been aware of what serotonin syndrome can REALLY be like, I likely would have driven off into that lake that day rather than go to the emergency room and tell them...THIS is what's wrong with me, please help.

Opinions on these forums are like gold to me. Some I scoop up, some I leave behind.

I like going to my doctor armed and ready.

Hi Thelma,

I think I understand your caution, but I do think we are being careful enough. As mentioned by someone else, if anyone says anything really dangerous or far out.. we have this pretty natural system of checks and balances here. Nobody would let it stand for long without challenging or correcting it.

Also, as individual's we do have full responsibilty for our own decisions and actions. What parent hasn't said, "If someone told you to go jump off a bridge, would you?"

I think when people share information, what has worked for them or something they have come across in print, they are doing just that. Sharing information. Giving people ideas to follow up on. Possible leads. Letting people know about potential treatments, or perhaps a potential diagnosis that has not yet bet considered. I don't think anyone is trying to diagnose or treat anyone they don't know and can't even see, whether they have any specialized background or not. It is just sharing information.

I know I don't expect anyone to take my word for anything when I make posts. I don't have any medical training whatsoever~ never even took high school chemistry. I used to have a tag in my signature line that read "I have no medical training, but I can read." That is why I often reference medical data from pubmed, emedicine, PDR, AAFP, or other reputable medical sources, because I want people to read the information for themselves, see if it's "a fit", and take the information to their doctors if they think it's applicable. It really is impossible for any doctor to keep up with everything at the pace of new research, and with the Internet and public sources of medical information... we have access to new research as soon as or before the average doctor gets it. And sadly, our doctors don't get much training in the disease conditions related to nutritional deficiency, and there are many. And also, sadly, many doctors are not up to date with things that have been known for decades. In their defense, it is impossible to know it all.

You are right that people need to use caution and careful consideration before taking any drug, supplement, vaccination, or new treatment. I think this not only applies to what we read on the Internet, but also to things prescribed by our doctors. That is why sometimes people get second opinions. In the best of worlds, we would all have doctors open to letting us be partners in our own care, and welcome discussion in regard to potential treatments, side effects of drugs, possible interactions with supplements, etc.

I also know so many people here, present and past, who I am grateful to! I don't mean for this to become the mutual admiration society, but it is true that Rose, MrsD, Legna, FJ, and others were instrumental in giving me information that directly led to my family's medical problems being 'fixed'. I got many good tips on the TS, Autism, PN, and other forums, and continue to learn every day from so many people across the many forums here~ and the same is true all across the Internet.

I've even corresponded with a few research doctors via the Internet, and have found them more willing to spend time with my concerns for free than my own family doctors who get paid. My family's medical problems were found and fixed thanks to the Internet, and go figure... the only treatments that can help my family ARE nutritional supplements and dietary changes.

I digress. But, to answer your question that began this thread, I think "Yes, we are being careful enough." But I understand your caution that people shouldn't blindly accept what people say to be true, or necessarily applicable to their individual circumstance.

There are some great sites available, too, for safety concerns, although people should always discuss with their doctor before taking anything.

Linus Pauling Institute
http://lpi.oregonstate.edu/infocenter/

PDR Health Prescription Drugs
http://www.pdrhealth.com/drug_info/r...haindexa.shtml
PDR Health OTC medications
http://www.pdrhealth.com/drug_info/o...haindexa.shtml
PDR Health Supplements
http://www.pdrhealth.com/drug_info/n...gs/index.shtml

Cara

Thelma,

In my humble opinion, it is posts like these that send some members to other sites.

I have read all these posts on this thread twice and I still don't understand the reasoning behind why you posted this. You said "do you need a reason to post this" well maybe not but you know why you posted it and if someone's posts are that upsetting to you then you need to address these people with a pm or go to the administrator or such. As it stands, I am sure there are some that have gotten their feelings hurt, thinking that you are talking about them.

I think everyone here is smart enough to know what information they want to take out of a thread if they are asking a question or lurking trying to find information.

Thelma, please think about this one~If it ain't broke, then don't fix it. :)

Linda

Well said Linda.

I can't even begin to list what I have found on the internet that educated my doctors. I'm not stupid enough to only use what I've read on the internet to diagnose myself, but to help the doctors. Ellie posting about her parietal seizures has made me realize after all these years that I'm not crazy. Now I'm not diagnosing myself, but will use this rare seizure type to bolster my medical records when I go to see a new Epi doc. Multiple doctors have diagnosed my balance and spatial problems as balance problems associated with my ears and have treated them as such.

I really think we need to give those who support here some credit.

I would like to add that I have had a few docs tell me to get off the boards and stop reading. I think those are the docs that are threatened by our knowing information, be it from a medical reference or from someone's first hand experience. I personally want to hear it from the mouth of babes, so to speak...I want those who are here in the trenches with me on a daily basis and understand my pain to share their experiences. I am not a textbook case as many of us are not..so we come here to find the answers that sometimes the medical community cannot provide.

I have also had docs tell me that I am very intelligent and know that I have researched and read about my medical problems. My PM doc has encouraged me to write a book about my medical problems and experiences. If I did that I would have to include the people I met along the way and those that helped me the most...It would be the people I have met on the boards. Doctors do not have the time to spend with us at each visit...so we must rely on our own instincts, research and read and read....and ask questions of others!

I think most people know not to come onto the boards and believe everything they read...They ask questions and read and take away what they think to be valuable. I think most people never talk about their experiences as being the absolute or only way to address a situation...We share and brainstorm and that is the way to solve problems...

GJZH, I found your statement: "I would like to add that I have had a few docs tell me to get off the boards and stop reading. I think those are the docs that are threatened by our knowing information," to be interesting. Fortunately, it has not held true in my experience with my doctor. Since I'm 'between' neuros, my GP is treating my MG, and she has always been very receptive of any info I can glean for her online. She has even asked me to post certain questions to see what the concensus of experiences was so that she would better know how to treat me or what to expect, and also asked me to research it online to see what info I could come up with. She also asked me to give her the site address so that she could pass it on to another patient of hers who has the same condition I do. She considers the help and support we get from one another to be an important part of treatment.
Of course, she may be very unusual as far as doctors are concerned! :D But I'm glad I've got her, just as I'm glad I've got all of the help I've found here on NT.
Thelma, this has been a very interesting thread. I'm glad you started it, since it has made us think, and has brought some really good replies.
Hugs,

loisba,

I wanted to add that my family doctor is much like your GP...He is young and encourages me to read. He told me he is not threatened at all by my reading and enjoys my questions...On the other hand, the docs that seem most threatened sadly are my spinal surgeons...More than one has told me not to read...or ignore the posts...I think they are frightened of what I might learn...but I have been directed to some very excellent surgeons by people on the board...What better place to ask and get opinions!

There will be some that read this post, "whether they actually come on and post once in awhile" or "use to post" or "lurk" and say to themselves, "I'm not posting anymore if that's what is thought about me trying to help someone or "see, that's why I don't post anymore " or "now, I know I'm not posting." This is what is heartbreaking to me because I have gotten alot of valuable information from these sites.

Doody, Mrs. D., and so many others have brought so much to this board to help people. I want to thank everyone for all they contribute to help when they can. I hope this post doesn't discourage you from continuing to do so.

This post has brought so much confusion as it seems the questions have not really been answered as to why this was posted to begin with. If it's just to warn people not to take everything they read to heart, then come on, I have enough faith in my felllow readers that they know what is right and what is wrong.

I'm sorry but it's that I don't like trouble being stirred up and my instincts are telling me something is going on here. There were a couple of people basically being pointed out that they shouldn't be posting what they are posting and it's their right to post whatever they want as long as they aren't going again'
st the rules. I mean, come on, they were sincerely trying to help others.

Is it just me that thinks this post is wrong? If so, then I sincerely apologize as I am not out to hurt anyone. I am just very confused with why this post is here to begin with.

Linda :)

Hi Linda:)

I dont feel you need to be concerned that those of us who offer support and information are going to stop posting!
No way, no how:D

There are so many of us who have learned and benefitted so very much from the sharing of experience and information, in addition to the group support, and that IS the fundamental purpose of these kinds of forums.

I think that this thread has brought some interesting responses, and it certainly seems to me that the overwhlming consensus is to keep on keeping on just the way we always have!

The important thing is that we do try not to stifle conversation here, but rather to conduct it respectfully and openly. Everyone has a right to be heard and to state their opinion. Doesnt mean we will all agree with each other, but at least we all have the opportunity to speak, provided we do it in that respectful way.

I would hope that rather than making people want to leave, that would encourage people to want to stay....knowing that debates and discussions like this can take place in an atmosphere that is polite.

I do commend you for your sensitivity in caring about people who may take offense at this thread Linda........again an example of the caring people who make Neurotalk special. Your opinion is as valued as everyone else's and I am glad that you have added something else for us all to think about:p

The good thing about Thelma's thread is that it reminds us all to be careful what we say to others.

There'll always be a throwback in a crowd, but I think for the most part the people in the forums do the best they can and take into consideration the person they are talking to.