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SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Community
533 Members
527589 tn?1301681778

Curious question

More than a few of the doctors that I've had the misfortune of seeing have been less than happy with my snooping online for medical answers/advice. One told me, "You shouldn't do that. It'll just raise your anxiety level." Another said, "Nothing you read online is fact." And another got very indignant, "If you already know the answers from your online research, what do you want from me?"

I get the impression that there is real fear that we will learn things previously known only to doctors. While I'm sure there is plenty of garbage on the internet, there is also fact. You just have to sift thru it. This is why I take my findings to the highly knowledgable physicians for answers and help sorting out the trash from the truth. Yet all my hard work is invariably pushed aside, without so much as a sideways glance. They absolutely hate it when I use THEIR terms, even if I happen to pronounce them wrong. I would think they'd appreciate all the HOURS we spend searching, investigating, catologing and cross checking. Afterall we are doing THEIR job, are we not?

So
My question:
Are they afraid that we might actually be learning a thing or two and they'll have to admit they are only human?
(hard thing for those with a GOD complex to do)

This is what happens when a person has too much time on their hands .. LOL

12 Responses
551343 tn?1506834118
Can I play devils advocate here?

I think the Internet is a fabulous tool and is full of a wealth of stuff we can now be exposed to but the problem is how do we actually USE the information we glean?

I kind of actually agree with the doctors about the Internet because it is just too easy to put in google for example - pins and needles - burning - AND come up with some horrible diseases and I think for SOME PEOPLE this can make them totally anxious and fixated about that particular disease, I have actually come across a few in my time sadly.

I think perhaps the doctors are just trying to protect us from ourselves LOL.

I know for a FACT that they USE the Internet too for help. They also use medical books too they dont know everything and usually only focus on the MAIN illnesses that people get that have classic symptoms and when someone presents with baffling symptoms you can bet you they grab the first book or go to google to swat on it LOL.

I suppose inpain4evr IF you had spent yeas learning your trade then had a lay person sit in front of you trying to tell you your trade you would be a bit miffed too even if they did it with good intentions LOL.

YOU SEE once you do that to a doctor they will immediately label you as ANXIOUS or having a CD disorder wanting to be ill even IF all you are trying to do is help.

They dont see it that way well no that isnt true SOME DO, but the majority dont.

I did try to google at the beginning and got quite scared actually how much stuff was out there and if I had carried on I could have talked myself into all manor of illnesses LOL.

Yes research and perhaps use it but just be wary on how you use it as otherwise you just get the blank look and the old rubber stamp will come and dipped into black ink and right across your chart will be NUTJOB lol.

So I can see both sides of the story here and balance is the key but not everyone is capable of that sadly.

Your an intelligent person and want to know answers why wouldnt you, BUT you also have maintained a good and healthy balanced approach to it all, sadly not everyone is able to do that and hence this is the ones the specialists remember........

So in answer to your question (nearly forgot what it was then LOL got so engrossed in such a fabby question) ......................

Are they afraid that we might actually be learning a thing or two and they'll have to admit they are only human?

NO. I just think they are more afraid they might have to do more work for a living LOL.....
1137779 tn?1281546105
Ah, yes, you're right Maria...no longer can they hide behind the mystique of long Latin phrases and the charming (not)  'there, there, dear, no need to bother your little head about it'!

I've certainly had middleaged male docs get antsy about my knowledge. But there is a new generation of docs coming along. My young GP gave me a blood test result and told me to google it because she didn't know anything - so could I teach her all about it. The same thing with xray results in Dec - she said I'd understand them more than she does..

I don't know how she would know that I know more. And it's a bit concerning in that I think would really prefer the old fashioned docs who were hardworking and encyclopaedic and whom you COULD trust. I don't really want the internet to tell me I have 3wks to live after the green boils appear!

To be fair, my young GP was spot on in her tentative general dx of my neck though - and within 10mins.

But I also think you've got a big chunk of it right too IP4E - most docs seem to have such fragile egos and need to protect their status (imagined largely) and territory so tightly.

1056589 tn?1273750702
I have to admit I too have looked up stuff on the internet especially in the beginning,
I still do it from time to time. I just cant help myself.
I am one of those people that always has to know why.Whats the reason for somthing and I am not satisfied until I know. Which for me is just brutal in regaurds to my Limbo Land status.
I am all to familure with the look of distain from doctors when I have started to rattle off terms and info that I should not know. I am also very organized to the point of being anal retentive. I can remember dates and detailed timelines without having to write them down.Which doctors have labled as OCD. But I have had a few docs tell me that they wish all of their patients could be as detailed as I am.
But I have learned to play along and to dumb myself down a bit when it come to talking to doctors. Espeacially the first meeting.
I also have learned how I may sound when I am telling my story and symptoms to a doctor. Because I have had to repeat it countless times I feel as though it may sound like a script. May even sound practiced. Because it actually is. I prepare myself for my doctors appointments.I write down my questions and for all practical purposes feel like I am running my lines...When you think about it we all do. Now I try to look at it from all sides.....
Sorry rambled a bit but you get the gist....
Take Care, Theresa
956292 tn?1334058469
Hello,

I too have used the internet. I first used it to look up my problems I was having with my vision. My search brought me to a website for optic neuritis and MS...Funny thing is I did share the information I found upon a follow up appt. with my neuro. I typically do not search things out but upon reveiw of my MRI results...he told me Hmmm funny you should mention that...(MS) the rest is history but he never commented on my using internet for anything....

Although I am not dx. with MS or anything else for that matter,this is where it all began.. I do use the internet to educate myself on tests, medical terms mostly but ultimately I look here on this forum for guidance when I freak out or feel anxious about the "what could it be" I have learned here, that it could really be anything..So yes, I do use the internet, not to try and self diagnose, although sometimes you think you can....I do not share info with neuro because I want him to just treat me for what I tell him and sees, but I feel at least I can learn something about what MAY be going on and understand what those big words they use actually mean...and maybe what tests should be performed in different situations.... I use the health pages here alot..


The best thing about the "searches" I have done for me is I have met all of you.

JibJen ;o)
1137779 tn?1281546105
Quoting: The best thing about the "searches" I have done for me is I have met all of you.

JibJen ;o)

----Yay! I so echo that!  

At the end of the day it's still about human contact isn't it? It's what makes life worthwhile...

blessings one and all
samxx
Avatar universal
Whenever I am talking with any doctor I make it a point NOT to use any medical terminology and when they say do I asked what they mean.  I dumb it down on purpose.  I have never asked if I have a particular disease either.

I think Maria has expressed it all very well.  

When I am speaking with the doctor I make sure he/she understands what I am trying to tell him, explain my symptoms as clearly as I can, what is happening to me, and if he/she is not understanding, then I try again.  If, the doctor just doesn't "get it" than that is not the doctor for me.

Many do have God complexes, and those who do not want to listen and help figure out a real answer are not giving the type of care I want anyway.  You have to be able to work with your doctor for the best treatment.

Good luck to you and hope your answer comes soon.

Wanna :o)
Avatar universal
hello,

i have also learned to emulate wanna's approach when dealing with my doctors now.  when this all started, i went in with lists and suggestions and was met with eye rolls, smirks and prescriptions for mood-altering prescriptions.  

i did slip up last month with my neuro and brought up ME--which he said he knew nothing about--but quickly recovered and moved on to non-specific symptom-related discussion so i wouldn't lose him.

i do keep myself informed as i am a researcher by trade--or used to be when i could work--but i have learned the hard way that the docs have little to no respect for my information gathering skills.

best wishes,
binx
428506 tn?1296560999
I think it is ridiculous.  Really, if I was going to the store to buy a new appliance, I'd be a sucker to not have first researched my purchase.  Yet MD's don't believe that a layperson can be educated.  I take it as a sign of insecurity.  They would rather color us paranoid than admit that there is a lot of information available and accessible to patients on the internet.

I think it is a cultural lapse on their part, and hopefully an evolving situation.

I hold the highest degree in my field.  I would hardly be insulting to a person who came to me in an attempt to be conversant, instead I would appreciate their efforts to facilitate communication.  MD's need to step off of their high horses and get with the program.  No one is denying that a google search can replace the experience and expertise from a proper education, but we can be informed and proactive.  After all, it is our health that is on the line!

(Stepping off of soapbox...)


428506 tn?1296560999
Edit:  "No one is denying that a google search CAN'T replace the experience and expertise from a proper education, but we can be informed and proactive."

Sorry, I was too busy fuming to check my work before posting!
Avatar universal
you ROCK.
1137779 tn?1281546105
Yay, wonko, can I cut and paste to any letters I write to neuros, please?!

You're absolutely right.
samxx
527589 tn?1301681778
Ah, the can of worms I opened .. LOL
What I have garnered from your responces is that I should keep myself informed but divulge minimal amounts to the drs that I see. I can understand where this would be to my advantage. What I need to learn is how to formulate the proper questions, knowing things without saying too much, to get straight answers.

I never obsessed over any one affliction that I found where my symptoms seemed to fit as I kept finding more catagories that I fit into.  I just wanted the drs to try to look outside the box [if no textbook symptoms present then psycho] and I thought if I brought up a few things it might trigger a more in depth responce. I never tried to tell them how to do their job, never insinuated such.

Common courtesy is not too much to ask from my health care provider. It's MY health (jumping up on wonko's soapbox) I believe I should know ALL the facts about it and if I can't get anything out of the drs then it's to the internet I turn. I don't understand all the secrecy. Doctors not wanting to share their thoughts with me about my health is driving me to anxiety, not reading about this ailment or that on the interent.

Thanks all for your wonderful and insightful answers.
Have a great week!
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