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 :)