How to talk to my doctor & share research/knowledge I have found?

Posted by susangs @susangs, Mar 9, 2019

Hello,
Two years ago I was diagnosed with ME/CFS. Kudos to my doctor for making the diagnosis. The problem is that, after the diagnosis, I started reading the research on the disease and realized that my doctor is recommending outdated treatment options. Can anyone share their approach to educating their doctor without being obnoxious?

Liked by susangs, bavardlyn

@susangs I often mention alternatives I have found through research, friends, family and other sources. It opens the discussion and helps me understand why we are using the treatment plan that we are using. Over time my physicians have come to expect this of me. If your physician objects to you becoming as familiar as possible with your situation, the are not the right physician for you. He/she is not a god, nor should you follow them as one. At best you and your physician become a coordinated team looking for the best care for your continuance. Courage and blessings to you.

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@susangs I agree with @2011panc. I have had doctors tell me to stop googling! One NP told me to stop my "hobby" of googling things! I really resent that. If the doctor has so little confidence then maybe they are not the right doctor.
I think I would just mention to him that you had heard or read about this procedure or that procedure, and what did he think of them. That way you are not really suggesting that he doesn't know something, you are asking his opinion on a potential treatment.
JK

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@contentandwell

@susangs I agree with @2011panc. I have had doctors tell me to stop googling! One NP told me to stop my "hobby" of googling things! I really resent that. If the doctor has so little confidence then maybe they are not the right doctor.
I think I would just mention to him that you had heard or read about this procedure or that procedure, and what did he think of them. That way you are not really suggesting that he doesn't know something, you are asking his opinion on a potential treatment.
JK

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@susangs
Good Morning,
It is important for us to be pro-active in our own care. Doctors are human and it is NOT possible for them to know everything (old and new), although we often think they do.
Continue to do some of your own investigations and mention the results to the doctor. I think JK is right, it is the WAY in which we share the info with the doctor.
Ronnie (GRANDMAr)

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@2011panc , @jk Volunteer Mentor, @grandmar ,
Thank you for your thoughts. It's difficult for me to talk to her frankly without bursting into tears because I feel so defeated. I want her to understand that this disease is progressive and disabling and I need her help. I also realize that ME/CFS is poorly understood and even reputable sources, including Mayo, haven't updated their websites with the latest recommendations, so her sources may be outdated too. I've been passively dropping hints about the CDC fact sheet, Stanford research and NIH articles, but I guess I need to be more direct. Thanks again.

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@susangs I am glad to hear that you have tried subtle means to talk to your doctor. Don't worry. It is okay if you cry. We as humans have emotions and living with such fear and uncertainty as you are can easily lead to significant anxiety and depression, which may need to additional treatment requirements. Blessings to you.

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@2011panc

@susangs I often mention alternatives I have found through research, friends, family and other sources. It opens the discussion and helps me understand why we are using the treatment plan that we are using. Over time my physicians have come to expect this of me. If your physician objects to you becoming as familiar as possible with your situation, the are not the right physician for you. He/she is not a god, nor should you follow them as one. At best you and your physician become a coordinated team looking for the best care for your continuance. Courage and blessings to you.

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@susangs Hi Welcome to connect we care for each other and there problems I am in full agreement with 2011panc@ I use herbs,vitamins and other holistic items like the Tens unit . If your Dr. cant accept this maybe you need to find a new Dr. I'm glad mine does and is very helpful with her knowledge of herbals, vitamins . I have fibro along with the fog and I did research as you I told my Dr.. that the fibro group and research lab recommended more magnesium she was fine with it and keeps a check on my magnesium count in lab work . I'm taking 600 mg and it is still within limits. So as your doing advocate for your own health . You know your body

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@susangs

@2011panc , @jk Volunteer Mentor, @grandmar ,
Thank you for your thoughts. It's difficult for me to talk to her frankly without bursting into tears because I feel so defeated. I want her to understand that this disease is progressive and disabling and I need her help. I also realize that ME/CFS is poorly understood and even reputable sources, including Mayo, haven't updated their websites with the latest recommendations, so her sources may be outdated too. I've been passively dropping hints about the CDC fact sheet, Stanford research and NIH articles, but I guess I need to be more direct. Thanks again.

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@susangs I am so sorry you are dealing with CFS. I am in the same boat. In my experience in working with doctors, I have learned that they like to see the research articles. Unfortunately, I don't think there are any in medical journals yet. Printing that information from the CDC and actually handing it to her may be helpful. Doctors are extremely busy and may not take the time to look things up on their own. Be sure to include the part about the pathophysiological changes that affect people with CFS. Good luck! Don't give up! You are your own best advocate!

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Why don't Dr.s do blood testing for vitamin and drug interactions?? Mine doesn't even do referals. If I find a specialist, they have to get a referal from my provider DR. !?!?!

Liked by susangs

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@susangs

@2011panc , @jk Volunteer Mentor, @grandmar ,
Thank you for your thoughts. It's difficult for me to talk to her frankly without bursting into tears because I feel so defeated. I want her to understand that this disease is progressive and disabling and I need her help. I also realize that ME/CFS is poorly understood and even reputable sources, including Mayo, haven't updated their websites with the latest recommendations, so her sources may be outdated too. I've been passively dropping hints about the CDC fact sheet, Stanford research and NIH articles, but I guess I need to be more direct. Thanks again.

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I'm sorry for your experience and relate to bursting into tears in the doctor's office out of frustration. I've done that in more than one setting & have found most health professionals are compassionate and understand. But I know how that feels to react in tears when I wish I was more articulate, as I had been before my diagnosis. Keep your research going, I am, since I have nothing to lose and potentially something to gain.

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My story represents a couple reasons why I think it happens, for me. My story is fairly simple and 90% of yours. I've had epilepsy for 40 years and had 7 neurologists, 2 of for more than 5 years. The last 32 years I have lived in the same town, population average 400k, which may only have 8-10 neurologists. How many good in that 8-10? Neurologists practicing with epilepsy focus only are hard to find. Oddly 50% are over 50 years but that doesn't mean they have collected 50 years of epilepsy practice focused, with their gathering of new epilepsy information, lets say over 20 years. During the first 25 years I read enough to find what you said very true with the last 15 even more on my own for new info (note: there just hasn't been much of). The young bucks were better but not much. I have ended up using the neurologists (please no jaws dropping until you get there) not for diagnosis because that is accurate, but for management of my medication. 60 years ago maybe 3 medications were available for treatment. There has been a boom of new med use treatment during the last 25, now approx 15-20 meds, and it's been a giant improvement. I stay with my neurologist to keep the most effective meds I have used to date. I have used approx 10. I and most neurologists would consider an epilepsy patient well managed at 90% seizure controlled. My neurologist would prefer to try those new meds or combinations of to manage 100%. Intent well taken but, that won't be reached, in well over 50% of epilepsy patients. He may have good/better information than I, and "maybe" more client history,,, read about,,, the best he can do. We wouldn't compete but he may be impatient because he did actually know more and be frustrated having to explain. I should then say, with pen in hand, where did you get your info and where can I get new and more too. Which may make him feel on trial but,,, you have to ask because you are purchasing his services, which is another whole field of views.

Reason 1,,, Not all neurologists are up to date on the 20 new meds. #2,,, There aren't enough epilepsy patients in a town of 500k to make a profitable business, if you focus your practice on epilepsy only. Understood most medical practices are a business and there isn't time for it. Unless a specific walks into their office there isn't a reason for them to focus on your questions. #3,,, I certainly am not of mental caliber to practice 5% of neurology but, like yourself I can collect plenty of history effectively, processing well enough to present "variations of new practice history", elsewhere in the world. #4,,, A lot of human character in a diner with friends may act the same way if you present new tire information to someone who owns a tire store. Neurologists and you doctor too are human behaviors in or out of a practice, and not necessarily 1%ers, so we will have handle questions with kid gloves if he's all you have.

Liked by susangs

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@lbern

I'm sorry for your experience and relate to bursting into tears in the doctor's office out of frustration. I've done that in more than one setting & have found most health professionals are compassionate and understand. But I know how that feels to react in tears when I wish I was more articulate, as I had been before my diagnosis. Keep your research going, I am, since I have nothing to lose and potentially something to gain.

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@2011panc , thank you for responding. My doctor is indeed compassionate and I value her. I was sick for five years and my previous doctors were dismissive of my symptoms. The doctor I have now diagnosed my ME/CFS two years ago and I'm trying to gently point out to her that treatment recommendations from that time are no longer recommended today. I'm fact, they are contraindicated for many of us. My becoming a bawling baby every time I see her does nothing to help my credibility!

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@1634517678

My story represents a couple reasons why I think it happens, for me. My story is fairly simple and 90% of yours. I've had epilepsy for 40 years and had 7 neurologists, 2 of for more than 5 years. The last 32 years I have lived in the same town, population average 400k, which may only have 8-10 neurologists. How many good in that 8-10? Neurologists practicing with epilepsy focus only are hard to find. Oddly 50% are over 50 years but that doesn't mean they have collected 50 years of epilepsy practice focused, with their gathering of new epilepsy information, lets say over 20 years. During the first 25 years I read enough to find what you said very true with the last 15 even more on my own for new info (note: there just hasn't been much of). The young bucks were better but not much. I have ended up using the neurologists (please no jaws dropping until you get there) not for diagnosis because that is accurate, but for management of my medication. 60 years ago maybe 3 medications were available for treatment. There has been a boom of new med use treatment during the last 25, now approx 15-20 meds, and it's been a giant improvement. I stay with my neurologist to keep the most effective meds I have used to date. I have used approx 10. I and most neurologists would consider an epilepsy patient well managed at 90% seizure controlled. My neurologist would prefer to try those new meds or combinations of to manage 100%. Intent well taken but, that won't be reached, in well over 50% of epilepsy patients. He may have good/better information than I, and "maybe" more client history,,, read about,,, the best he can do. We wouldn't compete but he may be impatient because he did actually know more and be frustrated having to explain. I should then say, with pen in hand, where did you get your info and where can I get new and more too. Which may make him feel on trial but,,, you have to ask because you are purchasing his services, which is another whole field of views.

Reason 1,,, Not all neurologists are up to date on the 20 new meds. #2,,, There aren't enough epilepsy patients in a town of 500k to make a profitable business, if you focus your practice on epilepsy only. Understood most medical practices are a business and there isn't time for it. Unless a specific walks into their office there isn't a reason for them to focus on your questions. #3,,, I certainly am not of mental caliber to practice 5% of neurology but, like yourself I can collect plenty of history effectively, processing well enough to present "variations of new practice history", elsewhere in the world. #4,,, A lot of human character in a diner with friends may act the same way if you present new tire information to someone who owns a tire store. Neurologists and you doctor too are human behaviors in or out of a practice, and not necessarily 1%ers, so we will have handle questions with kid gloves if he's all you have.

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You are so right! I live in a somewhat smaller city than yours, but my diagnosis of ME/CFS has very few specialists even in very large cities. I have no hopes of ever seeing one.

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@rubbob1

Why don't Dr.s do blood testing for vitamin and drug interactions?? Mine doesn't even do referals. If I find a specialist, they have to get a referal from my provider DR. !?!?!

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I've experienced that as well.

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This is a GENERAL comment on doctors of any specialty. I have found NO evidence that they wish to be "partners" with patients in evaluating problems and solutions. They have no time for patient input or questions. This is absurd. Right now I am dealing with dental issues with my periodontist of 30 years. He is the only doctor I have ever really trusted and felt confident with. But now even he does not want to talk with me about developing a PLAN on several issues with several options. I am 70; he is older and very well known and successful in his field. If there is anyone you can talk to, it is the nurses. But an even better opportunity is the NURSE LINE that insurance companies offer now. At least they listen; but that has its limitations as well. I do much of my own "research" (mainly internet) and, I admit, cause myself problems by not quite understanding certain things or evaluating them incorrectly. Bottom line: doctors do not seem to want patients as informed partners. I can empathize with them to a degree. They seem so pressed for time with requirements by insurance companies or professional guidelines – that it is not all their fault. But, who is the loser? I submit – it is their patients.

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Keep searching… I was diagnosed treated and then when to another hepatitis specialist to verify that in fact my hepatitis had been cured.. I'll be eternally grateful for that. My issue begin 6 months after treatment,,, I had contracted hepatitis in Vietnam in 1972 I had carried that virus in me for over 40 years. Now I have been a constant search to find a doctor away from the veterans hospital that can explain what went wrong… The Vomiting has subsided to only 1 or 2 events a week yet I have no appetite in the pain in my joints throughout my entire body Has increased times 10.. Fatigue is the other issue which is hardest to get ahold of. I consider myself very fortunate in that I only have scarring on the right lobe of my liver. The 3 physicians that I have spoken to and have had Countless MR i's and blood work Have given me little hope possibly because they are just on aware of the side effects with the drug being this new. My only suggestion to anyone is that it is financially possible to continue with your search and possibly find a hematologist who can assess the problems and give you a direction for treatment… best of luck..

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