In his book The Creative Destruction of Medicine, Eric Topol says that hundreds of thousands of patients trust their virtual peers more than they trust their physicians. Is that true for you? Do you trust your online peers more than you trust your physicians?
http://mobihealthnews.com/16511/how-medicine-will-be-topold/
http://creativedestructionofmedicine.com/
The Lecture is about 1 hour 15 minutes
http://www.c-spanvideo.org/program/304973-1/
Dear Ann,
Hello Ann,
I am very fortunate to have found my GP, Rheum, and DC, even my DDS. I trust them all, but am always very leery if a new one is necessary, as I have been through so many specialists that I have had such a tough time with, or were of no help. I feel a dread beyond words thinking that I will someday need another Pain Management Dr, or Neurologist. We spoke of that earlier, as far as the PM's.
I have been given such boundless, unexpected knowledge from my virtual friends, here on BF, love them dearly, but am currently content to trust the Doctors that I have. If my Dx is still incomplete or pending, that is okay, if it is there, they will see it, or I will know of it. I will say that with the mix of AI diseases, it is difficult to tell one from the other.
I will get back to the hour video, let you know what I think of that, for now, just answering the question.
Hope your day was a good one,
SK
I can say I don’t place much trust in either. I’m a very analytical person, I never accept an explanations easily, unless their proven. It seems most diagnosis is done by a process of elimination. Doctors seem to take an educated guess based on whatever the patient tells them, especially if their conventional methods of proving a diagnosis fails. So I didn’t hesitate to get a second opinion with my Lupus diagnosis, and I made sure I knew enough about what they were looking at, so I could ensure all bases were covered. I can recall times that I would go to the emergency room, and tell the doctors my pain level was at a 10,( just to get someone to look at me, though it wasn’t) and they would just write me a prescription for oxycodone, which I would never fill. But they guessed I needed it, and that proved my theory. I can appreciate the experience of my peers, but medical science has so many variables, I wouldn’t assume that what is happening to them could be the same for me. I still need proof.
When I first began experiencing pain in my feet, I went to an urgent care and he diagnosed varicose veins as the reason for my swelling. I was going to have laser treatment, and something didn't sound right to me and I went to my PCP before I had my first treatment. He said it wouldn't help any of the pain and swelling and he ordered an MRI and then bloodwork which lead to my diagnosis. My Rheumatologist is very sympathetic to my weight loss efforts and didn't want to prescribe more prednisone. I have confidence in both of them, and I know I have to do my part to learn what I can about my disease to help them. I know my body better than they do, and I trust my instincts which I know are God-given.
Trisha
I absolutely rely on my virtual peers. Every time I have something new bothering me and ask the Doctor (any doctor) they just shrug--won't second guess any treatment of another doctor, and pass me around. I'm always wondering if my problem is Lupus related or some new problem. I have found that I am surrounded by "specialists" who only care about their body part and nothing else. I don't feel that I have any advocate. Joanne
I have to jump in and mention that I trust the guidance that God gives me. Meaning that I believe God does and can work through some that believe in the thought (but being more science based most don't) in him that their skill is determond by him and given by him. But also I believe that we also know how our body feels. So I feel we have a responsibility to work with the Dr's towrds finding solutions to what we are going through but not to rely on the Dr's as a God. They are human also and err. I guess because I did hairstyling for so many years. They sat in my chair and I heard their day to day problems while I did their hair. I just see them as anyone else but they just had more education and have a more educated guess than I do but don't understand how it feels. But blending mine and theirs together I find it works better. My thought is usually collective that I've gathered from my peers too.
Hello Ann,
I did want to add that I have a long standing relationship with my GP, and DC. They cared before me before the third rear end car accident, that seemed to 'kick all of this up'. Though it was not a great experience, I should have been able to get over this accident. There was a definate rapport and trust already in place with these Doctors, which surely continues to work to my advantage.
I am able to question and discuss things at length, and usually able to see these men the same day or the very next should I need them for anything.
I felt that it was only fair to add this to the discussion.
Wishing you a good day,
SK
I am fortunate enough to have been with each of my dr's for several years except my pain mgmt but I trust them all explicitly. They all work together and share information on all tests that are ran. I feel very, very lucky to have the team of dr's that I have! However, I do read the things that everyone posts just in case I have something going on that we haven't figured out yet. I appreciate everyone that posts on this sight, it's great to know there are ppl out there that know what I'm going though and I hope & pray that someday they'll find the cure for all of us :-)
Stay positive and lean on your family & friends!!
Tonya
Hey There,
I trust some Dr.s, some I would not give the time of day too....Dr.s have no idea the pain we go through ....or the issues we face day to day ...they have to worry about 15 pts in the morning and 15 pts in the afternoon....and it also depends on what new medicine is on the market......I usually tell the Dr. what I want or need and he gives it to me ....I have never met a Dr. who didnt, and I have went to a lot of them. I trust all of you more than Dr.s... really .....or at least most Dr.s.....but I must say I listen to my body and it tells me alot....listen to your body, it tells its own story.
Nite all, Bern
Hi everyone !!!! Hope that everyone is doing-okay !!!!!!!!!!!smile This is a good topic to talk about. Well for me i think both are good ( the peers and the doctors ) !!
Talking with my PEERS:
1. Gives me moral support , "that help me to deal with how serious my condition & pain are and will become . "
2. Helps me to deal more clealy that Am Not Alone , with the suffering and times when noone else knows (have a clue), of what am going through...
3. Shared experinces of the effects of the situations of emotion and mental stress that comes along with Livng with this LUPUS disease.
4. Knowing that there is someone else , somewhere is having the same problem as me, makes me feel better sometimes and that goes back to number 2. ... smile
5. How another dealt with the pain, gives me insight of what i can & will not do to have such pain ( perpares me mentally -if it was to happen to me .. you know the possiblity !!!!) , even if it dosen't happen .
6. COMPASSION!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! and it's great that the support is there (well here ).
Talking with the Doctor's :
1. Information from the start with me helped to calm me down!!!!!!!!!!!! When the doctor gave me the diagnoise , i was so out of it; not understanding NOTHING- it was hard - my doctor showed me alot of Comfort...
2. They helped me to manage this LUPUS stuff with surety that it was up to me to live a normal life , with the understanding that there will be GOOD days and BAD days , and there will be days that the PAIN would make me ,(in my words LOSE MY MIND!!!!) hard to bare.
3. The first meds., that were given to to me were totally not for me !!, but the doctor came back within 2weeks, with the ones that am taking to this present day, is part of my plan of Hope to fight this LUPUS stuff!!!! and am VERY Thankfull for this .
4. The visits are also good , they get me in and get me out!!!! , (because the air condition , is a KILLER for me .... LOL), they understand that it hurts my body soooooooooooooo bad !!!!!
5. I have no complaints , my team of doctors , nurses, and the staff have been GREAT since Feb. 7, 2011.
Well thanks for the time , of letting me share my words and feelings and hope that have relief for some . Taking the time to understand and expressing what is going on with you ( myself), helps alot !!! There are those that do care and will care, if you LET THEM!!!!.... Beverly L.
I have mostly had negative or wasted doctor experiences. So much so that There have been times when I was just so overwhelmed and disgusted with the medical system that I would go off my meds and all dr appts for months. Only to then go back reluctantly at the urging of family and friends. I am luck to have a good rheum and internist now after so many years of duds.
But i have to say that I rely on the advice of my peers and online more than what the mds tell me, or atleast dont take it at face value. I research alot, maybe too much. But Im my best advocate.
I had my checkup with my rheumatologist yesterday and told her about this topic on the Lupus support group and my answer that I trust you more. What a surprise when she ordered several tests and checkups that she had never ordered before. She is actually my favorite doctor and is usually fairly attentive but seems to let many complaints slide without comment.
Hi Ann A., Am going to do the best that i can with everything !!! My grandmother (rest in peace), use to tell me 1. Do what you can and make the best of it ,2. Change what you can if it is possible, and 3. Most of all, Leave it to GOD , he will fix it in time (so DON'T WORRY about nothing - Keep it moving ). Remembering these 3 things has helped me so far !!! Hope that the help you ... talk to you later.... Beverly L.
You welcome -smile . That's what friends are for to lift you up when nothing is going right /or are feeling down, sometimes it comes from someone you don't even KNOW (personally)!!! Yeah! grandma, was a woman of serenity and yes she had alot of saying that helped me to where i am today,(eventhough sometimes i didn't follow what she said would happen at times - but for the most part many things stuck with me after i went through some trails and tribulations with LIFE and myself ... Well thanks for responsding back , talk to ya later .... Beverly L.
I'm fortunate in that I have great respect for my G.P. (general practioner, i.e. everyday, first line medical doctor in Aussie system). In fact after I see the Skin Specialist & the Thoracic Surgeon, I go over their instructions with the G.P. & ask if he is in agreement with the Specialists plan. Most times he is BUT occasionally he will say "no, not for you in my opinion as you have ......" I mean he has treated me for over a decade the Specialists are more removed from my 'big picture'.
Then I have to make a decision on who's advice I will follow & ensure that all parties are equally informed so no one is working at cross purposes.
Kind Regards Kaz
I am aware that I'm fortunate in this & that my G.P. has chosen to be a Bulk Bill Doctor, i.e. I don't have to pay to see him, he accepts the amount the Government pays as his full fee. We still have many Bulk Bill G.P.'s in Australia but they are of course getting rarer.
There are a lot of aspects of chronic illnesses that patients know more about than doctors. On the AVM group, we had so many doctors tell their patients that AVMs are never hereditary, but viewing patients' stories made it quite obvious that in fact AVMs can be hereditary, as so many patients had multiple members in their families with AVMs.
Doctors get a lot of their information from textbooks, which often repeat factoids verbatim from edition to edition, though the information may be outdated or not empirically based. The doctors who truly listen and learn from their patients become great doctors; the ones who assume that they know it all, and that patients know nothing, can never be great.
I have asked you guys on here more questions about my lupus than my doctors because you all know what I’m going through and the doctors who don’t have this disease couldn’t possibly understand what we go through on a daily basis
Hello, that is so true- the doctors REALLY don't know what we go through "Living with LUPUS" every day ...Beverly L.