Are we being carefull enough?
 

There are a lot of posts all over these forums where we are being very less than carefull with what we are telling people about their various symptoms and giving our diagnosis to them with suspicions of other diseases to look out for and to be tested for.

There is no way humanly possible to know who you are talking to nor what their upfront medical problems are.

You can help in that you relate what your own personal problems have been and how you related to treatment but it remains a black hole you are talking to to try and tell them what they should or should not do.

In my own condition to tell me to fall back on nutrients is to sign my death warrant. Nutritional supplements are in that same avenue of non usage along with even every day spices we use.

I know some here think that the patient is the one with the final decision and that is true but to instill in them the distrust of the medical profession and to insist they try anything without the consultation of their doctor FIRST AND FOREMOST is to take on your shoulders the responsibillity whatever the outcome will be.

The very fact that the various medical professions take years of medical training certainly should allow you the thought that they see the human being in front of them and know all the related facts pertaining to them while we see them on a screen and can not even be sure they have any ailment at all let alone the one they are asking for help with.

Yet we recommend various vitamins and supplements as fast as they ask.

This is not good

Think about it and realize it is a person behind that screen who may just need to go back to their doctor or see another one to find help.

It can't come from us.

Hints on equiptment yes

Personal experience yes

Advice on mineral or nutrients or even the most one seen here B12 are a no no

Sorry but if only one is hurt with loose advice it is one too many for me.

I have to agree that we should only talk about topics in general terms,and not share personal info.I often wonder if we are protected enough...

It is only ourselves that can protect us although I don't see the dangers here.

It is our protecting others that are new here that has me concerned.

Do you think we are worrywarts lol

Naah...now I know several worrywarts,and I don't think we fit that category,Thelma..At least,not yet.;)

Hey Thelma

I absolutely agree with you that everyone should always be very careful about not converting personal experience and knowledge gathering into making diagnosis or assumptions about other people's conditions.

Where we share info and experience here and on whatever other health forums we participate in, yet it can never take the place of consulting personally with a qualified healthcare professional.

And yes, we should all be very careful in not allowing sharing of personal information to become an attempt at diagnosing someone else or dispensing medical advise to them.

A very fine line, and one we do always need to be reminded not to cross!
I personally think the members here are generally very respectful of this

I do think tho that sharing our experience and knowledge is nevertheless a very valuable thing....because sometimes it can provide someone with a nugget of information to take to their physician to consider, and that in turn can make a pivotal difference in their health

That was true in the case of my own son...where his intolerance of every medication that the docs tried him on meant that we had no viable treatment options for him, and his prognosis was not good. If I had not come across someone sharing info on nutritional methods that had helped her child, I shudder to think how different my son's life would be.

However
the CRUCIAL issue is that I took that information to our doctors and sought their advice and guidance and in that way we were able to bring a turnaround for my son.

So where we should be very careful, yes, not to attempt to "diagnose" others nor to "prescribe" treatments for them, still we should also not feel stifled to share personal experience as that too can be valuable to someone somewhere, provided they use that information wisely and filter it through the guidance of a qualified healthcare professional!

Definitely a fine line, but one that we do need to be frequently reminded of, that sharing experience and knowledge and ideas and opinions does not equate to making diagnoses nor prescribing medical advice

why is advise on minerals or supplements a no no in your opinion thelma?

lack of potassium almost killed my mother.

I hope anyone reading any of our posts realizes that it is always given in the context of our own opinion. Even if it is something our doctor has told us- it may not apply to everyone else.

We can only really offer suggestions of alternatives or options regarding treatments, meds, vitamins, ect.

It is up to the individual to process that information by researching it more themselves and/or talking with he appropriate doctor, nutritionist, naturopath, therapist, ect.

Although I'm pretty sure most MDs do not study very much about nutrition, supplementation or the majority of alternative health methods.

I enjoy reading about new things and doing some follow up searching on my own - to verify the new info for myself.

I have found and learned so many more good things on the forums and internet that I would never had found otherwise- from doctors or library books.

Good point, Thelma! And Chemar, I like the viewpoint you expressed, a nice balance. We definitely don't want to be diagnosing, but we do want to offer our own experiences, helpful sites, suggestions, insight. Otherwise we become no more than a shoulder to cry on. Which is good in itself, but if I've got a problem with my MG, I not only want a sympathetic ear, I want to know what others who had a similar problem have found helpful.
I feel I've got enough smarts not to blindly accept the diagnosis of anyone on this site, but I do agree that not every visitor will understand the dangers inherent in letting a layman diagnose their condition and treatment. So we do need to be cautious in how we word our suggestions, our experiences, our information. Not "Do this!", but "For what it's worth, this worked for me."

Thelma...I definitely see the validity in your observations. I'm really glad you brought this up, because I, for one, have never considered it seriously enough before.

Still, I think that I pretty much agree with Chemar's point of view. I went through several doctors who were unable to diagnose my secondary FMS, then found the info I needed to diagnose it myself on these forums. Of course, once I had that info, I went back to my doctor and presented my case to him again with the suggestion that it might be fibro. He sent me to a rheumatologist who confirmed the diagnosis.

I personally take everything I read on these forums as advice only, and nothing more than that. But I can see where some might interpret it otherwise. So I guess I need to be very aware of how I word my suggestions in the future. Thank you very much for the reminder.

Idealist

Well Thelma...
 

I don't know what prompted this post?

<<removed personal info before the internet bots cache it>>

I always provide documentation on the net... I have done so for over 10 yrs...so people will know that the data really exists. The net can be a dangerous place...and I know that very well. And I have been reading and participating on PD on OBT and here.

If you had any inkling of how uninformed doctors can be, like I see every day,
you would embrace knowledge when offered.

For example... most doctors use outdated reference ranges for B12 tests, even today. Only Japan has the most aggressive protocol. And that is because they had a horrific drug accident that led to death/blindness and disability several years ago.. The drug Vioform oral devastated their country.
You can read about it here:
http://www.newint.org/issue095/devils.htm

Here in USA the old values of 200 for B12 are the cut off...but in Japan they treat anyone below 500, with B12. Slowly this is being accepted here in USA as well, to the benefit of many patients.

Here is a very recent paper from NIH about the value of B12 for older adults:
http://ods.od.nih.gov/factsheets/vitaminb12.asp

Recently it has been found that up to 70% of the USA population are deficient in magnesium (poor dietary habits). Low magnesium levels can exacerbate long QT
issues (heart) in those patients taking certain drugs (like methadone), and cause fatal arrythmias. Propulsid and Seldane were taken off the market due to QT side effects and drug interactions. As an aside...Seldane was extemely close to OTC status here in USA, when a professor at Georgetown Univ. discovered the QT events killing people, that were never reported. This led to Seldane and its generic being removed from the US market. (but it is still available in 3rd world countries). At that time Seldane was over the counter in Canada for several years! Imagine all those doctors who had no clue... and all the deaths that could have been prevented?

Low magnesium potentiates this risk, and is significant. Low magnesium impacts osteoporosis, chronic pain, muscle cramps/restless leg syndrome, insomnia and ADHD. I have a magnesium thread on the vitamin forum here with research papers, to illustrate these effects.
Low magnesium is a common effect of chemotherapy for cancer.

Here is a medical reference that details the nutrients that drugs can deplete in patients...leading to side effects and loss of quality of life: This book was compiled from papers from around the world published on MedLine.
http://www.lexi.com/lexistore/market...0000/index.jsp

Using nutrients wisely can increase the quality of life for many people who suffer from chronic disease. Keeping up with the newest information is what the internet can provide at its best.

And you know tomorrow I will be voting for a governor in my state that supports stem cell research/use.;)

and we thank you for so graciously sharing your knowledge with us mrsd. :)

if just one person is saved from suffering, then all your posting is worth it. we know there have been countless! me and my monkeys included. :D

There are some other aspects to this.
 

First, not every opinion here is NOT a professional one. There are a number of medical and related professionals who post and give opinions here. I won't reveal the identities of those I know of--they can "out" themselves, like Mrs. D, if they choose--but there are a lot of informative posts here by such people (and I'm also sure there are medical people who post here I am NOT aware of).

Second, even among the "non-professionals", there are people here whose long experience and extensive research in their subjects gives them a knowledge that matches or overmatches that of many doctors and researchers. On boards I frequent, these include JCC on gluten, Rose on B12, Wings on yoga; I'm sure there are others on boards I don't frequent. Generally, as Mrs. D says, these are people who give their opinions couched in evidence as drawn from extensive databases they've compiled, and they are well worth listening to.

Third, the collective aspects of these boards work towards making our opinions well-reasoned and not mere speculation. People who go way out on a limb are likely to be called back in the context of the debate give-and-take. Often, given an accurate representation of an individual's symptoms and test results, these forums can arrive at possible diagnoses and avenues of investigation that may be more comprehensive than an individual doctor's. I've often said as regards the peripheral neuropathy board that as an aggregate I would match our skills in these areas up against any university faculty on Earth, precisely because we have expertise in so many areas AND we have access to the findings/thoughts of other experts through research. While university faculties should be able to do the same thing, they are often not as motivated as we who have suffered to find such info and answers.

In the end, as long as we label our opinions as just that--opinions--just as most doctors should, I don't think we have a problem. But it would be erroneous to assume that a lot of opinions here are not just as well-informed as one could get in a medical office. To censor our opinions would be to detract greatly from one of the main reasons for the existence of these boards.

Thanks for stating those important points so very well, glenntaj!



and MrsD
i just want to add my voice to Curious' in thanking you personally for the valuable and qualified information that you provide! I and my family have also benefitted greatly from your generosity in sharing your knowledge on these boards.

I'd like to add...
 

Last night I was pretty tired...and forgot...and apologize if I seemed
strident.:o

I have met the most wonderful people on the net over the years.

I think the dedication of many people who have been frustrated by the
medical system we have now, has just been inspiring to me.
One does not need a "degree" or license anymore to become knowledgeable
about many aspects of medical care. In fact the medical system we have today is overwrought with detail, insurance goobling up precious time which should be reserved for patients, and intense competition by drug companies to make
the most money possible (which may negatively impact many patients' care)

When patients have vague complex symptoms, I find doctors often tune them out. People then fall through the cracks, and either do something "foolish" (which I think Thelma is alluding to here), or suffer loss of quality of life. Those people may be labeled..."hypochondriac" as well and it may be written into the doctor's file even, to follow that patient around the system! :rolleyes:

For every questionable person who posts on the net on forums like this, I find many MORE knowledgeable people, who really contribute to improving
diagnosis and treatment. And basically, I think even the "extreme" viewpoints can be seen as not 100% bad. People with skills who can handle computers and technology to get on the net, do have the ability to make their own decisions. It also affords others who might have expertise, to post and bring to light the "errors" which may be present, or to warn of excesses.

Thank you Chemar, Curious, Glenn... and also to those who have not responded yet here! ;) (Cara, Wittesea, Alkap Jo55, rose, Lara, west1, Annelb, KimS, LizaJane, etc...it is hard to remember them all, there are SO many! )

And thanks to DocJohn for providing this platform for all of us who are interested in improving quality of daily life!

One thing I have always noticed when using online health support groups like NeuroTalk, is that the members are always very good at looking out for each other.

If one person gives advice or makes a suggestion that could be harmful, there is always someone else who posts who offers a correction, a warning, or at the very least they give opposite advice and suggestions.

That's the beauty of having a large group where so many members have a lot of knowledge -- a mistake (bad advice, whatever you want to call it) never sits for very long before it is gently corrected by another member, or before another member offers an oposing viewpoint.


I do agree that when it comes to things like supplements, vitamins, and minerals that members have to be more cautious - the members making the suggestions and the members taking the suggestions. I say this because so many people view vitamins as "harmless" so when they see a suggestion they have the assumption that "it's just a vitamin, I might as well try it it can't hurt me".

Which is untrue - vitamins, minerals and supplements are not "harmless".

In addition, if someone wants to try a vitamin all they have to do is buy it. No doctors prescription needed, no pharmasist there to check for interactions with medications, just walk in the store and buy it like you are buying a gallon of milk.

So because of the general perception that vitamins are "safe and harmless" and because it is so easy to buy and take a vitamin, I do think that there should be more caution used when these things are discussed and suggested... and more caution on both sides, the person seeking advice and the person giving it.

But in the end, each and every person is responsible for their own actions. Whether they are suggesting a vitamin to someone or whether they are accepting someone suggestion to take a vitamin - it is still up to both people to be responsible for their own choices and actions in their own life.

Well, what are we here to talk about then? First it's suggested we use OT for off topic topics. If we're 'on topic', isn't that topic about whatever the forum is supposed to be about?

I've never told anyone you have to do this, or you have to do that. But what is a place like this without learning about everyone else's experiences!? For me, reading other's experiences has helped to shape my own routine.

Who better to get advice from than people who have experience?

I'm really confused about the point here.

What should we be doing in the forums?

I just went out for a smoke and I had another thought 9I do my best thinking while I'm outside smoking because there are no distractions) :)

Anyway, it occured to me that a lot of times my own advice and the way I word my suggestions to people have a lot to do with how well I know the person and what I know about that persons personality.

For example, there are some members and I know that they are very research-involved. So for those members if they post "I have a problem A" I know that I can just say "why not try drug Z" -- and I know that the member will look up drug Z, find out what it is and what it does, check for interaction with their current meds, look up how well drug Z works for problem A, and then if they feel it might help, they will go to their doc and ask about possibly trying drug Z.

On the other hand, I know that there are some members who if they post "I have problem A" and if I want to suggest drug Z, I will provide a lot more info and word it more like a suggestion, because I know that some members are the type that will see "why not try drug Z" and without even looking it up or knowing what it is they will go to their doc and say "I want to try drug Z" -- so for those members if I make a suggestion I word it differently, provide more information, etc.. and I do the same thing (providing more info, wording more carefully) with members who I do not know very well.

So, I may sometimes give advice that looks quick and looks like it has no information to back it up, but in those cases it is because I have known the member for a while and know that they will do their own search for info whether I provide info in my post or not.

It's something to take into account anytime we might see a post that looks like it's less responsible in terms of offering information to back up a suggestion/advice. The person giving the advice might know the other person well enough to know that they will be responsible about seeking out information.

There has been a good deal....
 

put forth here about posts. I really can't recall any instance in which I've tried to diagnose a poster, rather, refer those folks who have no clue about any neuro issues, or aspects of living with the same to other, legit sites that can provide them with the INFO that can help them decide for themselves.

Only rarely, have I suggested, occasionally strongly that these people either call their docs regarding new symptoms/complications or get second opinons. I'd learned this the very HARD way...before I had become net-conversant. When I found this site and other sites, I only validated what I had instinctively knew to be either off or way out of any reasonable expectations, in relation to what docs were telling me. The info here and at other sources affirmed my own intuitions!

I found as much info here [pro and con] for issues such as B-12, and other supplements as anywhere. What amplifies and validates or invalidates the research, info and claims as to the effectiveness of the supplements has been the personal experiences of each person participating!

I guess it comes down to everyone reading, re-reading, then re-re-reading all the caveats attached to posting. I have found some folks disregard those caveats to the extreme...not many, but a few. Other readers/posters are, I guess not as street/life savvy? I have only found one site in which the 'great guru who knows all' is accepted and respected and it's not an attitude most here participate in.

I guess a lot would be lost language wise if we ALL had to preface every post with the 'I am not a professional medical person, merely a recipient of their attention or inattention-- and I feel that....blah, blah...'. No sane person in pain would/could get past that blather!

Thelma, Can I ask? What prompted this? Was there a particularly ASSERTIVE poster? I don't know what circumstances predated this post.

Well, nuff said. - PAIN FREE MOMENTS [even a couple] for all! - j

Exactly what we are already doing here Doody:D

The purpose of forums like these is for exchange of information and experience and for support...........and from what I can see, these boards sure do just that and in a very special way:p


(ps: I think Thelma was just trying to add a word of caution re people who may just stop their meds or try something OTC without first checking things with their doc or another qualified person and in some cases, that can be dangerous.........but hey, who am I to think for Thelma and I am sure that Thelma wont be slow to qualify just why this thread was started;) )

Doody,

I think that the concern is not about sharing personal experiences, but rather the concern is about giving advice that has no personal experience or information to back it up.

I think the concern is not about posts that say "Oh, I had problem A once and I tried drug Z and it worked very well"....

I think the concern is about posts that say "you have problem A, so you need to take drug Z".... (no personal experience offered, no information offered, and it's worded to sound like an instruction instead of sounding like advice or a suggestion).

That's my understanding about what the concern is.... posts that sound like instructions instead of sounding like advice, suggestions, personal experience, information, etc...

Of course, I could be totally missing the point and misunderstanding the intentions and concerns... I'm a blonde, so I've missed the point and misunderstood things int he past :)

when i offer brownies does everyone take one? ;)

advice is offered. no one has said do this, take this, eat this or else. :eek:

lots of valid points. this is a forum. a message board to share information and offer support. this is not an ask the doctor or call a nurse site.

thelma or any and all members, if you see any posts where you suspect somebody is trying to practice medicine...report it asap!

so if this thread was started with any particular thread in mind...i hope it is reported.

Curious, well said....
 

No one is forced to eat a brownie!

One has to use the brain power left in us to try and decide for ourselves. Seems as if many in this world have been conditioned otherwise...Tis scary! -j

My reason for posting this in the first place is this. Do I have to have a reason? Not really. It is sufficient that the words I have put out have been read and thought about and now have evolved to there having to have been a reason.

Why is this so?

It has been illustrated in the messages of response that all nutrients and supplements are not totally safe for all and that is important to understand. Others have sworn by the ones they have had experience with and while that information is good they are not saying do as I do.

One has come on board in her support for B12 and while it is interesting the remarks of her personal opinion on uninformed doctors is not one I share. The years of training can not be broken down to one or two doctors and one persons experience with them. Third hand information of said uninteresting of doctors towards patients is not revealing to me that it is a problem.

Another has commented on the quantity of education of members here and the 'professionalism' of some who have 'outed' themselves and others who have yet to reveal themselves. This is not a reliable area to find out the variances of what the level of competency is in anyone including myself.

There are people here and on the other site that are highly placed with their educational levels and yet I would never consult them on any incidence that would affect me personally. I would be a fool to stand in one room and talk to another in another room and in particular without face to face contact and knowledge of who I was talking to.

I have no reason to have put this in here save to garner the talk about how we interact with the one in the other room.

I had no intention of finding out who or what anyone believes or who they believe in or exactly what they even think about my subject matter.

My only intention is that we never lose the fact that as we can't see anyone in this box in front of me neither can they see me.

The ones answering here are not the ones who need us to remember this.

We are the ones who need to never forget them.

So don't put this into another case scenario of someone having started me on this subject as no one did. If I were to see a post I would in all probability handle it myself unless it required being removed.

Now that is because I don't know the moderators here so I don't know where they would stand on the issue and while I personally don't like the concept of moderation I can't see my using them as an alternative.

Now don't get me wrong it is the concept I don't like not the human being.

I am not into small talk and never have been so when I post it is not always like some would like it to be but it is true to my inner core and that is fine with me.

So I need to know the person before I can say much to them and that is why I have posted this as there are some people out there who really don't need medical advice or even concern but use this and other forums merely to communicate with people, to talk with another human being.

So maybe we should think twice before we get into the medical aspects of talking and just reach out and find the hand being proffered and say hi my name is Thelma.

Idealist is one name I would like to mention as having posted here. That person got it right on

Hi Idealist my name is Thelma Glad to meet you.

Corny or what? Stupid or what?

That is for the face in the black box to decide. At least just think about it.

Wow. I think this is one of the best and most interesting threads I've seen on these forums in a while.

I too would like to step forward and thank Mrsd for the several times she has helped me, one of them quite recently. Thanks Mrsd! :)

I really like the line she used that "one does not need a degree or license anymore to become knowledgeable." Not having a diagnosis for my chronic pain, I have spent several years researching pain itself. The mechanics of pain, the dynamic emotional and psychological responses to it, and how chronic pain leads to actual physiological changes in the brain and body. I haven't met a single doctor in quite a while who knows as much about this as I do, simply because they haven't the time to dedicate four years of study to any one area of medicine.

I would also like to say that I have learned more "coping techniques" on these forums than I could have obtained in a lifetime of professional medical assistance. For that I thank everyone.

EDITED TO ADD:
I see more posts before mine now that have been added since I started typing away. lol I need to re-read them as it's highly likely now that my post is totally out of context.


I'm a great believer in people having the choice to research and look for ideas, take onboard what we feel is ok and discard what doesn't apply. When you think about it, that's what the internet is all about. It's different from a library where you go to look up something specific but don't get to see all the different sides to a subject or the tangents it can lead on.

If I'd not found the internet and read what others suggested and researched it over and over myself, my son would still have the Sydenham's Chorea/RF diagnosis he got when he was 4 and he'd probably still be taking prophylactic penicillin until he's 21 years of age as suggested by specialists here. He's almost 20 now and since early teens he's finally been able to get on with his life with correct diagnoses.

I don't recall ever seeing anyone say that people should do something in particular. They're suggestions. If someone here wrote that they were taking Zoloft as well as large amounts of 5-htp, then I'm sure we'd all be jumping all over the post to say why not to do that and telling them to talk to their doctor. I know I would. If someone told me to take copious amounts of Vitamin B6 to cure myself of something, I wouldn't. I would research why they might suggest that particular vitamin and go from there.

It might be more helpful if Thelma could elaborate more about her concerns then I would know more about what she means, because at the moment I'm not really sure. (plus it's only 5am so that doesn't help)

I know I skip all over the forums and if I see a post from someone looking for information, then I usually will try to help them even if it's links to information pages on the net. Not everyone holds the same views and I try to remember that. e.g. I don't necessarily believe everything that people say about certain treatments or conditions, but it's not my right to stop them from saying it if it's helped them or their children. What I'm more likely to do is to research it really well myself and then decide what I will do personally. As I said, I have great faith in people to research information after it's been posted and as someone else said ... if we go up the road to the health food store, we can load up on anything imaginable. Are we doing that? I don't think so. In this day and age I think people know enough about vitamins and minerals to realize that mostly they're medicine and to be cautious and to ask advice from relevant medical professionals whether that is the local GP, some type of Specialist or a complementary medical professional.

What exactly is the post about, Thelma? I'm not really sure, yet I've waffled on and on here pre-morning coffee. ;)

I'm also very grateful to mrsd and to Chemar and to Bonnie Gr and jamie and FJ and dkw and many others for all the helpful information they've shared over the past 10 years that have been of benefit to myself and others.

Well, firstly... yes, and secondly no, I don't think so. :)
Thelma, you know we're a very sensitive lot of souls out here. If we don't know exactly what you mean then we can sometimes take it really personally. I've done a lot of that in recent months unfortunately even when it's not been personal, so sometimes just saying something without a reason or directive doesn't cut it. I mean that with all due respect.

I understand what you mean Lara but isn't it better to have some topics that can be talked about that leave some confusion for discussion.

lol Thelma. I just love a good discussion but confusion is doing me in.
[Esp. at 5am in the morning.] I shall return caffeinated.

take care there. We are listening!

Something else that I was just thinking about is that what is important for me to remember is that we all have different posting styles. Many of us have seen each other online for a very long time so we get used to certain posting styles or 'way of speaking' online. Some people will appear very business-like and other people less so. Some people are givers and some people are takers of information. Some people are sharers. Some people don't know who any of us are yet some of us seem to know who everyone is. Those are the things I try really hard to remember and part of that is being cautious or careful, although I've noticed lately is that caution can really cramp my style.

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.