Comments on: How to Get Your Doctor to Take Your Undiagnosed Condition Seriously http://takeusseriously.org/2009/05/how-to-get-your-doctor-to-take-your-undiagnosed-condition-seriously/ Resources for Undiagnosed & Misdiagnosed Patients Sun, 11 Mar 2012 20:19:40 -0700 hourly 1 http://wordpress.org/?v=3.1.4 By: Ellen http://takeusseriously.org/2009/05/how-to-get-your-doctor-to-take-your-undiagnosed-condition-seriously/comment-page-1/#comment-651 Ellen Mon, 29 Nov 2010 07:21:31 +0000 http://www.eruditebyte.com/bulletpointblog/?p=89#comment-651 Nicole, since we're all just sharing our experiences here, surely we can discuss the best way to approach getting quality healthcare without name calling or insults... Nicole, since we’re all just sharing our experiences here, surely we can discuss the best way to approach getting quality healthcare without name calling or insults…

]]> By: Nicole http://takeusseriously.org/2009/05/how-to-get-your-doctor-to-take-your-undiagnosed-condition-seriously/comment-page-1/#comment-650 Nicole Mon, 29 Nov 2010 01:37:33 +0000 http://www.eruditebyte.com/bulletpointblog/?p=89#comment-650 I would never make the mistake of thinking that a doctor is god-like in any way, and much of medicine is not a mystery, it is science. I expect a doctor to listen to me and work with me because it is my body and i am paying for a service when I consult a doctor. If it were a mechanic I was consulting about a car problem, I would expect the mechanic to listen to me and determine the course of action together. I expect the same from a doctor. if the doctor doesn't have an answer, he/she should say so and allow another doctor to do what she/he cannot do. I recently ended up in a specialist's office out of state because no doctor would diagnose a condition I explained repeatedly to them, gave them everything needed to make the diagnosis so that I could get the help I needed before it progressed to a stage of irreversible damage. I was right, the doctors were not listening to me and now I have stage III of a particular disease, and there is so much damage and additional pain and still I am not getting therapy needed because my doctor is dragging her feet with the needed referral. I cannot accept being careful to not get in "over my head." Since it is ultimately my mind that must make the decisions regarding my health care it is only "over my head" when information remains unexplained. I have never considered doctors to be anything more than professionals in a specific field, like plumbers or climatologists or architects, they are professionals whose time is compensated. There exists nothing that is "over my head." Had I not pursued this and simply accepted the "I don't know what it is but it isn't that" that I was hearing from doctors whose egos were more important than an accurate diagnosis, I would still be being biopsied and poked while the scholarly medical documentation was being ignored Trying to give an accurate amount of information in a short period of time to ensure prompt but safe treatment in the ER is my responsibility, and Adrienne, you are condescending. I have 2 M.A. and 2 PhDs and there is little that I cannot comprehend, including comments laced with derogatory snideness. Perhaps a sob story is what you hear ringing in your ears based on your "experience" as a "medical professional" but you probably work in coding or something simple and hear patient's stories while you are eavesdropping on people. You are condescending and patronizing and your comments about medicine being referred to as "practice" are rather outdated and desk-calendaresque, as if lawyers and doctors having a practice were the same as a gymnastic routine. You are about 53, slightly overweight and single or worse, your husband is a cuckold, i know your "type." You are snotty and your comments not sage or wisdom packed but infantile and without factual merit. Snotty. I would never make the mistake of thinking that a doctor is god-like in any way, and much of medicine is not a mystery, it is science. I expect a doctor to listen to me and work with me because it is my body and i am paying for a service when I consult a doctor. If it were a mechanic I was consulting about a car problem, I would expect the mechanic to listen to me and determine the course of action together. I expect the same from a doctor. if the doctor doesn’t have an answer, he/she should say so and allow another doctor to do what she/he cannot do.
I recently ended up in a specialist’s office out of state because no doctor would diagnose a condition I explained repeatedly to them, gave them everything needed to make the diagnosis so that I could get the help I needed before it progressed to a stage of irreversible damage.
I was right, the doctors were not listening to me and now I have stage III of a particular disease, and there is so much damage and additional pain and still I am not getting therapy needed because my doctor is dragging her feet with the needed referral.
I cannot accept being careful to not get in “over my head.” Since it is ultimately my mind that must make the decisions regarding my health care it is only “over my head” when information remains unexplained. I have never considered doctors to be anything more than professionals in a specific field, like plumbers or climatologists or architects, they are professionals whose time is compensated.
There exists nothing that is “over my head.” Had I not pursued this and simply accepted the “I don’t know what it is but it isn’t that” that I was hearing from doctors whose egos were more important than an accurate diagnosis, I would still be being biopsied and poked while the scholarly medical documentation was being ignored
Trying to give an accurate amount of information in a short period of time to ensure prompt but safe treatment in the ER is my responsibility, and Adrienne, you are condescending. I have 2 M.A. and 2 PhDs and there is little that I cannot comprehend, including comments laced with derogatory snideness. Perhaps a sob story is what you hear ringing in your ears based on your “experience” as a “medical professional” but you probably work in coding or something simple and hear patient’s stories while you are eavesdropping on people. You are condescending and patronizing and your comments about medicine being referred to as “practice” are rather outdated and desk-calendaresque, as if lawyers and doctors having a practice were the same as a gymnastic routine. You are about 53, slightly overweight and single or worse, your husband is a cuckold, i know your “type.” You are snotty and your comments not sage or wisdom packed but infantile and without factual merit. Snotty.

]]> By: Ellen http://takeusseriously.org/2009/05/how-to-get-your-doctor-to-take-your-undiagnosed-condition-seriously/comment-page-1/#comment-397 Ellen Mon, 02 Aug 2010 07:39:11 +0000 http://www.eruditebyte.com/bulletpointblog/?p=89#comment-397 Sage advice, Adrienne - especially about how medicine can be perplexing for even the best practitioners. Thanks for the comment! Sage advice, Adrienne – especially about how medicine can be perplexing for even the best practitioners. Thanks for the comment!

]]> By: Adrienne C. http://takeusseriously.org/2009/05/how-to-get-your-doctor-to-take-your-undiagnosed-condition-seriously/comment-page-1/#comment-396 Adrienne C. Mon, 02 Aug 2010 07:34:00 +0000 http://www.eruditebyte.com/bulletpointblog/?p=89#comment-396 As a medical professional myself, it is important for the patient to relay all necessary information. However, not to sound condescending, we don't have much time or room on the history intake form to put EVERYTHING down. We don't need nor want to hear a patient's life history but rather the succinct and to-the-point info. Basically, it's how long have you had symptoms, where does it hurt, past trauma?, etc. It's difficult for the medical professional to condense a big sob story into pertinent information necessary for the doctor or whomever to diagnose and treat the patient. Remember that doctors are not God. Medicine is still a mystery and can be sometimes perplexing even for the most well-seasoned and experienced physician. (Maybe that's why the call it a 'practice'.) I DO most definitely agree with getting all and every single copy of results, records, etc., even if it costs you for "extra copies". It's NOT to make your OWN diagnosis but to have it for proof, in case there's a discrepancy in billing or need it for legal purposes. Like it was said before, it's a patient's right to see and have one's medical records. Just be very careful that you don't get in over your head. As a medical professional myself, it is important for the patient to relay all necessary information. However, not to sound condescending, we don’t have much time or room on the history intake form to put EVERYTHING down. We don’t need nor want to hear a patient’s life history but rather the succinct and to-the-point info. Basically, it’s how long have you had symptoms, where does it hurt, past trauma?, etc. It’s difficult for the medical professional to condense a big sob story into pertinent information necessary for the doctor or whomever to diagnose and treat the patient.
Remember that doctors are not God. Medicine is still a mystery and can be sometimes perplexing even for the most well-seasoned and experienced physician. (Maybe that’s why the call it a ‘practice’.)
I DO most definitely agree with getting all and every single copy of results, records, etc., even if it costs you for “extra copies”. It’s NOT to make your OWN diagnosis but to have it for proof, in case there’s a discrepancy in billing or need it for legal purposes. Like it was said before, it’s a patient’s right to see and have one’s medical records. Just be very careful that you don’t get in over your head.

]]> By: Ellen http://takeusseriously.org/2009/05/how-to-get-your-doctor-to-take-your-undiagnosed-condition-seriously/comment-page-1/#comment-388 Ellen Sat, 31 Jul 2010 23:12:36 +0000 http://www.eruditebyte.com/bulletpointblog/?p=89#comment-388 Thank you for this important guidance, Nicole! You're right - it's <em>so</em> important to get copies of all medical orders and records and review them! <a href="http://www.labtestsonline.org" target="_blank" rel="nofollow">Lab Tests Online</a> is a great website for understanding lab tests, and <a href="http://www.auntminnie.com" target="_blank" rel="nofollow">Aunt Minnie</a> provides helpful information for understanding imaging tests. Thank you for this important guidance, Nicole! You’re right – it’s so important to get copies of all medical orders and records and review them! Lab Tests Online is a great website for understanding lab tests, and Aunt Minnie provides helpful information for understanding imaging tests.

]]> By: Ellen http://takeusseriously.org/2009/05/how-to-get-your-doctor-to-take-your-undiagnosed-condition-seriously/comment-page-1/#comment-387 Ellen Sat, 31 Jul 2010 23:06:47 +0000 http://www.eruditebyte.com/bulletpointblog/?p=89#comment-387 How unfortunate that the doctor saw your comments about your health as "tangential" and not "thorough"! Great advice, Nicole - thank you! How unfortunate that the doctor saw your comments about your health as “tangential” and not “thorough”! Great advice, Nicole – thank you!

]]> By: Nicole S http://takeusseriously.org/2009/05/how-to-get-your-doctor-to-take-your-undiagnosed-condition-seriously/comment-page-1/#comment-382 Nicole S Sat, 31 Jul 2010 15:46:56 +0000 http://www.eruditebyte.com/bulletpointblog/?p=89#comment-382 I was surprised to find that notes in an intake at an urgent pain clinic revealed that "The patient speaks tangentially" which hurt my feelings because I was only trying to be forthcoming, trying to give information that I thought would help. Instead I was seen as a talkative fool. I have learned that doctors and other medical personnel do not want voluntary information. It is better just to wait for them to ask precise questons and answer their in brief, concise and as if I don't know anything at all about my body. How disappointing. The more I know the less I should reveal has been the unfortunate lesson learned by me. All of this information went into my medical records which the disability judge looked at and denied me benefits, in a large part because incorrect information had been recorded. I had a problem with my left knee, a torn meniscus, and it was recorded as my having twisted my right knee. Make sure the information is accurate and ask to see what has been recorded. Medical personnel make mistakes. Doctor's handwriting is often difficult to decipher and when done so by another person it is often recorded incorrectly. get your records and have mistakes addressed at your next appointment. If corrected it can make a difference in your treatment outcome. I was surprised to find that notes in an intake at an urgent pain clinic revealed that “The patient speaks tangentially” which hurt my feelings because I was only trying to be forthcoming, trying to give information that I thought would help. Instead I was seen as a talkative fool. I have learned that doctors and other medical personnel do not want voluntary information. It is better just to wait for them to ask precise questons and answer their in brief, concise and as if I don’t know anything at all about my body. How disappointing. The more I know the less I should reveal has been the unfortunate lesson learned by me. All of this information went into my medical records which the disability judge looked at and denied me benefits, in a large part because incorrect information had been recorded. I had a problem with my left knee, a torn meniscus, and it was recorded as my having twisted my right knee. Make sure the information is accurate and ask to see what has been recorded. Medical personnel make mistakes. Doctor’s handwriting is often difficult to decipher and when done so by another person it is often recorded incorrectly. get your records and have mistakes addressed at your next appointment. If corrected it can make a difference in your treatment outcome.

]]> By: Nicole S http://takeusseriously.org/2009/05/how-to-get-your-doctor-to-take-your-undiagnosed-condition-seriously/comment-page-1/#comment-381 Nicole S Sat, 31 Jul 2010 15:09:39 +0000 http://www.eruditebyte.com/bulletpointblog/?p=89#comment-381 Something I learned recently may be helpful when trying to find a doctor who will actually listen to their patient. I recently had the opportunity to look at my physiatrist's notes in my chart. I was shocked, very upset actually, to see that he had not heard what I said, he had written things that were absolutely not true, written that he had spent most of the appointment "counseling" me. he had ignored the reasons I had been referred to him. In fact he had written that I had no complaint of lower limb pain or weakness, which was one of the main reasons I went to see him. There was so much more that was incorrect I won't bother with describing it here. My point is that we have the right to see our doctor's medical notes about us and we should do so. We cannot establish a good relationship if we do not know what the doctor is actually transcribing in our records about us. It is so very important to have a doctor who is paying attention, annotating the appointment properly and we as patients cannot acquire good medical care if the doctor is not paying attention to us and hearing us. Furthermore, this type of medical notes in my record had a negative impact on my disability hearing. It was incorrect information that the judge had to look at and if the information is wrong, the outcome will be a denial of benefits. Get your records! You have a right to have them. The distress this has caused me has been terrible, which of course exacerbates pain. Not only do I not get treatment for the problem, I have been given an additional problem made for me by the doctor whom I was supposed to be able to trust. Get copies of your doctor's notes of your office visits. It is your right and your responsibility to know what is being recorded in your medical records that get seen by many people, other doctors and even judges. It can save time and help determine whether or not a doctor is suitable for you. Something I learned recently may be helpful when trying to find a doctor who will actually listen to their patient. I recently had the opportunity to look at my physiatrist’s notes in my chart. I was shocked, very upset actually, to see that he had not heard what I said, he had written things that were absolutely not true, written that he had spent most of the appointment “counseling” me. he had ignored the reasons I had been referred to him. In fact he had written that I had no complaint of lower limb pain or weakness, which was one of the main reasons I went to see him. There was so much more that was incorrect I won’t bother with describing it here. My point is that we have the right to see our doctor’s medical notes about us and we should do so. We cannot establish a good relationship if we do not know what the doctor is actually transcribing in our records about us. It is so very important to have a doctor who is paying attention, annotating the appointment properly and we as patients cannot acquire good medical care if the doctor is not paying attention to us and hearing us. Furthermore, this type of medical notes in my record had a negative impact on my disability hearing. It was incorrect information that the judge had to look at and if the information is wrong, the outcome will be a denial of benefits. Get your records! You have a right to have them. The distress this has caused me has been terrible, which of course exacerbates pain. Not only do I not get treatment for the problem, I have been given an additional problem made for me by the doctor whom I was supposed to be able to trust. Get copies of your doctor’s notes of your office visits. It is your right and your responsibility to know what is being recorded in your medical records that get seen by many people, other doctors and even judges. It can save time and help determine whether or not a doctor is suitable for you.

]]> By: Ellen http://takeusseriously.org/2009/05/how-to-get-your-doctor-to-take-your-undiagnosed-condition-seriously/comment-page-1/#comment-305 Ellen Tue, 04 May 2010 20:34:33 +0000 http://www.eruditebyte.com/bulletpointblog/?p=89#comment-305 Absolutely, Marianne! Thank you very much for your comment, and for the work you and INOD do for undiagnosed patients. Absolutely, Marianne! Thank you very much for your comment, and for the work you and INOD do for undiagnosed patients.

]]> By: Ellen http://takeusseriously.org/2009/05/how-to-get-your-doctor-to-take-your-undiagnosed-condition-seriously/comment-page-1/#comment-304 Ellen Tue, 04 May 2010 20:31:39 +0000 http://www.eruditebyte.com/bulletpointblog/?p=89#comment-304 Hello Ellen! Your article about Why doctors don't take those who are undiagnosed seriously and how to change that situation are wonderful. May we have your permission to put them on the "In Need Of Diagnosis, Inc. (INOD) website? INOD is a 501(c)(3) nonprofit. Thank you, ---Marianne Hello Ellen! Your article about Why doctors don’t take those who are undiagnosed seriously and how to change that situation are wonderful. May we have your permission to put them on the “In Need Of Diagnosis, Inc. (INOD) website? INOD is a 501(c)(3) nonprofit.

Thank you,

—Marianne

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