1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The ePatient Revolution
Ryan Prior shares his experience and his thoughts from attending the Stanford Medicine X Conference as he contemplates the rising of the ePatient Revolution ...
Discuss the article on the Forums.

would it be rude to take info into doctor to read?

Discussion in 'ME/CFS Doctors' started by hurtingallthetimet, Jun 13, 2012.

  1. hurtingallthetimet

    hurtingallthetimet Senior Member

    Messages:
    612
    Likes:
    115
    i had posted about some problems i was having and soemone mentioned it sounded like pots, oi
    and that i should as my doctor about it...

    im wondering if i should print out info on it and take it in? or would that be rude? i really like this doctor and dont want to offend her or her assistants...
     
  2. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    246
    Hi hurtingallthetime, it is totally fine to print out info and take it to a doctor, as long as it is from a reputable medical source, I do it all the time. And a good Doctor will know that they don't know everything and will be happy to have a look.

    If you have a doctor that is to arogant to read anything, and is delusional enough to think they no everything, then get a new doctor!!!!

    All the best
     
    WillowJ, ggingues, Googsta and 2 others like this.
  3. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    I did try once - taking some material from Byron Hyde's book "The Scientific .... ME" to my Neurologist. He had been struggling to understand my test results and in a contemplative frame of mind - he took no offence and agreed it could be ME - "they think it's viral" he even said. Certainly a gently, gently approach was necessary ...... sort of working together to try to solve.
     
    Googsta likes this.
  4. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    54
    No! I do it all the time! Usually just one or two short pages, and only if I plan on discussing that exact issue with the doctor during that apointment.

    Unless they are a specialist and you come to them with something totally out of their field of medicine....they may not like that.

    Probably also wait until you have established a good relationship with the doctor also. Going into a first visit with a giant folder of information probably not the best approach.
     
  5. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,041
    Sth Australia
    I do it all the time.. it is only arrogant doctors who arent good to have anyway, who have issues with this. If your doctors are not interested in checking out the things you have or learning about them, get rid of them.

    I even took some info from online to the TOP specialist in my state for ME/CFS and POTS..

    The info I took he liked so much he asked if he could copy it all to keep for himself. (The article I took in was on dysautonomia and POTS and all the different dysautonomia treatments used for what thing and common side effects each has).

    I also took in to him something from a big American CFS org with the pressure of support stockings recommendation for it... which thou he already prescribed those to his POTS patients, he was interested to see what the society was recommending for it.

    In your case thou you wouldnt want to be taking in the above things as you dont even know yet if you have POTS yet or not.. info on what it is.. and how its tested and what symptoms it causes and maybe info on how its often coexisting with ME/CFS, would be enough to take in at this point for your doctor to read.

    If you take in info just make sure it is good info and also coming from somewhere that the doctor will respect and will pay heed to. eg John Hopkins Hospital has some good info on POTS online which is quite simple for a doctor who dont know anything about POTS to start to get a basic understanding of the condition.

    Also info coming from big CFS societies also is often suitable to take.

    We are now in the internet age.. and many doctors have got used to this (thou there are some out there still adjusting to thier patients doing this.. but any doctor who has confidence and not on an ego trip, wont be fazed by it)

    A doctor not being interested in learning new things with their patients, will be a VERY out of date doctor in todays day and age.
     
  6. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Unlike others I haven't had much luck with bringing info to my doctors. The ones I've seen haven't been receptive to trying things they aren't familiar with. Can't hurt to try and it seems most here do have luck with it, hopefully you will too.
     
  7. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    54
    I've found that if a doctor isnt naturally inquisitive by nature, they probably wont be thrilled with being presented with information they dont know about. You can usually tell quickly if they are the inquisitive kind who enjoys continuing to learn.

    An open minded GP or Integrative doc usually much more receptive to new information. If a doctor likes to learn, they shouldnt mind being presented in a friendly manor with something a patient thinks could improve their health.

    If they are totally dismissive, move on, unless you really need them for something.
     
  8. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    54
    Hi! I was wondering if you tried electrolytes for your POTS/ OI ? I just started using a drink called Electro Mix by Alacer. Others are also using it. Its very cheap online. Just a thought.
     
    Fred1234567 likes this.
  9. Googsta

    Googsta Doing Well

    Messages:
    391
    Likes:
    156
    Australia
    I hope you get some answers Hurting ;)

    I have had success sending my Neurologist information before a visit, I think he may have thought I was a wee bit cheeky but he read it :).
    I wouldn't send anything to someone I see in the public sector though, they are so short of time already. In that situation I would take some condensed info in with me.
     
  10. hurtingallthetimet

    hurtingallthetimet Senior Member

    Messages:
    612
    Likes:
    115
    thanks everyone for the advice i appreciate it....i will try to find something from a source as suggested...
    these illness are so hard, so many symptoms and problems come along with them : (
     
  11. WillowJ

    WillowJ Senior Member

    Messages:
    3,098
    Likes:
    2,714
    WA, USA
    I often try to say something like, "I know you could look this up yourself, but I thought I would save you the time by bringing it in" to hopefully make clear I'm not dismissing their training, knowledge, experience altogether
     
  12. ahimsa

    ahimsa Senior Member

    Messages:
    1,068
    Likes:
    953
    Oregon, USA
    I agree with everything taniaaust1 says. In fact, many years ago I used the doctor's reaction to my bringing in information as a screening tool to select my primary care physician. She passed. :) She's not a CFS/ME expert but she treats me with a basic level of courtesy and respect that ALL HUMAN BEINGS should show to one another. Sadly, many doctors "missed the memo" on this important point.

    I do the same thing now when visiting a new specialist. Some doctors don't want to discuss my problems with OI (Orthostatic Intolerance, my specific diagnosis is NMH) and they don't even glance at the Johns Hopkins handout that I've brought describing the condition. Those doctors get crossed off my list for good.

    What's amazing to me is how many doctors say "what's that?" when I say "orthostatic intolerance." I wouldn't mind that they don't know what it is. Doctors can't know everything!

    What bothers me is that they have no curiosity about it. The fact that they only want to know their tiny area of expertise, and nothing about other conditions that might overlap with their specialty (e.g., how OI might affect sleep, for example), is really strange to me. As a former software engineer I'm used to the idea of looking at the whole system, not just one tiny piece of it.

    Edit - One caveat with this advice is that it depends on how flexible you are with doctors. If you are very limited in the doctors that you could choose (e.g., you live in an area with very few doctors, or you are on medicaid and not many doctors will take those payments, or some similar situation) then you might need to be more cautious in how you interact with your doctor. Yes, it's still wrong for doctors to be so arrogant. Yes, the doctor should at least listen to the patient (may not agree, but show the courtesy of listening). But when the doctor is in a position of power to prescribe medications, and you have limited ability to switch doctors, then you may need to consider this point more carefully.
     
  13. Fred1234567

    Fred1234567

    Messages:
    44
    Likes:
    20
    Thanks for the name of a cheap electrolyte- I find they help but Endura that I've been using is expensive.
     

See more popular forum discussions.

Share This Page