Guest guest Posted May 31, 2011 Report Share Posted May 31, 2011 that's an awesome site On Tue May 31st, 2011 4:23 PM CDT Francis Bill SUSPECTED PA wrote: >This link http://inod.org/default.aspx is found on the National Institutes of Health site. > >Just some of what is on there site > >In Need Of Diagnosis, Inc. (INOD) advocates for changes in the medical system that will increase the accuracy and timeliness of diagnosis. It is a resource center for people who suffer with illnesses that elude diagnosis. Those with one of the 7,000 rare disorders go an average of seven years before being diagnosed. Many die without being diagnosed. There are no physicians board certified in 'Diagnosis'. There is no physician whose job it is to take the reports from all the medical specialists and put the pieces of a complex medical puzzle together. > >The primary care physicians (PCP) who refer patients with complex disorders to specialists receive reports as to what the problem isn't, i.e. it isn't orthopedic, it isn't gastrointestinal, etc. but often there is no input as to what it might be. A single out-of-range test result found by one specialist may not be significant but when combined with out-of-range test results run by other specialists may reveal a picture when viewed by a master diagnostician. > >Though the United States economy is characterized as a free market system, this is not the case with the medical system. The patient has little say regarding the type of services made available. This needs to change. The patient must become a knowledgeable consumer of medical services. Collectively they can make positive changes. The public needs to make their interest in the matter of more timely and accurate diagnosis known. Only then will they be able to influence how public health dollars are spent. > > >A Sad Saga > >Several years ago, INOD received an email from a woman who said, " I just stumbled upon your website and wish I had found it earlier. -- My husband was finally diagnosed six months ago by autopsy. -- He was only 66 years old. " > >Her husband had served for many years as Superintendent of Schools, had retired as a Colonel from the Air Force Reserves and was serving as a director on the Board of the local hospital. In 2001, when the problems began, he was 6'3 " , 180 lbs and in great shape. It began with pain in his legs. He thought the problem might be shin splints. > > > >Over the next year and a half there were many diagnoses and many treatments. Some were fairly mild as H. Phylori. Others were major. One involved a kidney transplant. His son was the donor. He was seen by many hospitals, including three major teaching hospitals in different parts of the country, and by many, many " -ologists " . The doctors could not understand and said that they had never seen anything like what he was experiencing. > > > >He increasingly had more pain and weakness. Toward the end he had to travel by private jet and then he became too sick to travel at all. In the interim, his wife mailed his medical records along with 7 CD's of scans to over 60 research physicians. About 25% of them responded. > > > >The night he died, more than four years after his illness had become apparent, the nurses asked if she wanted an autopsy. There had been no previous discussion about this so she suggested that they ask the doctor. The doctor said " Yes " . Because of that, they found that her husband had Erdheim-Chester, a very rare disease. (The death certificate stated " Sudden cardiac failure " as the cause of death. There was no provision for amending it when the true cause of death was determined.) > > > >She and her husband were unsuccessful in their search for a diagnosis but this was not because of a lack of effort or a lack of means. In part it was because within medicine there is no specialty in " Diagnosis " . There are no physicians trained to put together the pieces of a complex medical problem - especially when the symptoms affect multiple parts of the body that fall within different medical specialties. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2011 Report Share Posted May 31, 2011 This is also on there site Autopsies reveal that approximately 40% of diagnoses are incorrect. In two-thirds of those cases, medical help could have been provided had the diagnosis been correct. (The above information was excerpted from the Journal of the American Medical Association article entitled Low Tech Autopsies in the Era of High Tech Medicine written by then-editor D. Lundberg, MD., Oct. 14, I looked up D. Lundberg MD From Wikipedia, the free encyclopedia D. Lundberg is a physician, board-certified pathologist, and, from February 1999 to January 2009, editor of Medscape. For 17 years prior to joining Medscape Dr. Lundberg served as editor of the Journal of the American Medical Association (JAMA). One month before joining Medscape Lundberg was dramatically fired from JAMA by E. Ratcliffe , who was then executive vice president of the AMA over a research study report from the Kinsey Institute that Lundberg had selected for publication. The JAMA article reported, among other things, that 60% of college students surveyed in 1991 considered " oral sex " as not " having sex, " which said was " inappropriately and inexcusably " timed to influence the debate over the Impeachment of Bill Clinton and " to extract political leverage. " Lundberg subsequently successfully sued the AMA and was awarded an undisclosed settlement. was later fired himself as a result of other unrelated disputes with the AMA board. > > >This link http://inod.org/default.aspx is found on the National Institutes of Health site. > > > >Just some of what is on there site > > > >In Need Of Diagnosis, Inc. (INOD) advocates for changes in the medical system that will increase the accuracy and timeliness of diagnosis. It is a resource center for people who suffer with illnesses that elude diagnosis. Those with one of the 7,000 rare disorders go an average of seven years before being diagnosed. Many die without being diagnosed. There are no physicians board certified in 'Diagnosis'. There is no physician whose job it is to take the reports from all the medical specialists and put the pieces of a complex medical puzzle together. > > > >The primary care physicians (PCP) who refer patients with complex disorders to specialists receive reports as to what the problem isn't, i.e. it isn't orthopedic, it isn't gastrointestinal, etc. but often there is no input as to what it might be. A single out-of-range test result found by one specialist may not be significant but when combined with out-of-range test results run by other specialists may reveal a picture when viewed by a master diagnostician. > > > >Though the United States economy is characterized as a free market system, this is not the case with the medical system. The patient has little say regarding the type of services made available. This needs to change. The patient must become a knowledgeable consumer of medical services. Collectively they can make positive changes. The public needs to make their interest in the matter of more timely and accurate diagnosis known. Only then will they be able to influence how public health dollars are spent. > > > > > >A Sad Saga > > > >Several years ago, INOD received an email from a woman who said, " I just stumbled upon your website and wish I had found it earlier. -- My husband was finally diagnosed six months ago by autopsy. -- He was only 66 years old. " > > > >Her husband had served for many years as Superintendent of Schools, had retired as a Colonel from the Air Force Reserves and was serving as a director on the Board of the local hospital. In 2001, when the problems began, he was 6'3 " , 180 lbs and in great shape. It began with pain in his legs. He thought the problem might be shin splints. > > > > > > > >Over the next year and a half there were many diagnoses and many treatments. Some were fairly mild as H. Phylori. Others were major. One involved a kidney transplant. His son was the donor. He was seen by many hospitals, including three major teaching hospitals in different parts of the country, and by many, many " -ologists " . The doctors could not understand and said that they had never seen anything like what he was experiencing. > > > > > > > >He increasingly had more pain and weakness. Toward the end he had to travel by private jet and then he became too sick to travel at all. In the interim, his wife mailed his medical records along with 7 CD's of scans to over 60 research physicians. About 25% of them responded. > > > > > > > >The night he died, more than four years after his illness had become apparent, the nurses asked if she wanted an autopsy. There had been no previous discussion about this so she suggested that they ask the doctor. The doctor said " Yes " . Because of that, they found that her husband had Erdheim-Chester, a very rare disease. (The death certificate stated " Sudden cardiac failure " as the cause of death. There was no provision for amending it when the true cause of death was determined.) > > > > > > > >She and her husband were unsuccessful in their search for a diagnosis but this was not because of a lack of effort or a lack of means. In part it was because within medicine there is no specialty in " Diagnosis " . There are no physicians trained to put together the pieces of a complex medical problem - especially when the symptoms affect multiple parts of the body that fall within different medical specialties. > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2011 Report Share Posted May 31, 2011 I believe he is in House TV show.CE Grim MDOn May 31, 2011, at 4:23 PM, Francis Bill SUSPECTED PA wrote:This link http://inod.org/default.aspx is found on the National Institutes of Health site. Just some of what is on there siteIn Need Of Diagnosis, Inc. (INOD) advocates for changes in the medical system that will increase the accuracy and timeliness of diagnosis. It is a resource center for people who suffer with illnesses that elude diagnosis. Those with one of the 7,000 rare disorders go an average of seven years before being diagnosed. Many die without being diagnosed. There are no physicians board certified in 'Diagnosis'. There is no physician whose job it is to take the reports from all the medical specialists and put the pieces of a complex medical puzzle together. The primary care physicians (PCP) who refer patients with complex disorders to specialists receive reports as to what the problem isn't, i.e. it isn't orthopedic, it isn't gastrointestinal, etc. but often there is no input as to what it might be. A single out-of-range test result found by one specialist may not be significant but when combined with out-of-range test results run by other specialists may reveal a picture when viewed by a master diagnostician. Though the United States economy is characterized as a free market system, this is not the case with the medical system. The patient has little say regarding the type of services made available. This needs to change. The patient must become a knowledgeable consumer of medical services. Collectively they can make positive changes. The public needs to make their interest in the matter of more timely and accurate diagnosis known. Only then will they be able to influence how public health dollars are spent. A Sad SagaSeveral years ago, INOD received an email from a woman who said, "I just stumbled upon your website and wish I had found it earlier. -- My husband was finally diagnosed six months ago by autopsy. -- He was only 66 years old."Her husband had served for many years as Superintendent of Schools, had retired as a Colonel from the Air Force Reserves and was serving as a director on the Board of the local hospital. In 2001, when the problems began, he was 6'3", 180 lbs and in great shape. It began with pain in his legs. He thought the problem might be shin splints. Over the next year and a half there were many diagnoses and many treatments. Some were fairly mild as H. Phylori. Others were major. One involved a kidney transplant. His son was the donor. He was seen by many hospitals, including three major teaching hospitals in different parts of the country, and by many, many "-ologists". The doctors could not understand and said that they had never seen anything like what he was experiencing. He increasingly had more pain and weakness. Toward the end he had to travel by private jet and then he became too sick to travel at all. In the interim, his wife mailed his medical records along with 7 CD's of scans to over 60 research physicians. About 25% of them responded.The night he died, more than four years after his illness had become apparent, the nurses asked if she wanted an autopsy. There had been no previous discussion about this so she suggested that they ask the doctor. The doctor said "Yes". Because of that, they found that her husband had Erdheim-Chester, a very rare disease. (The death certificate stated "Sudden cardiac failure" as the cause of death. There was no provision for amending it when the true cause of death was determined.) She and her husband were unsuccessful in their search for a diagnosis but this was not because of a lack of effort or a lack of means. In part it was because within medicine there is no specialty in "Diagnosis". There are no physicians trained to put together the pieces of a complex medical problem - especially when the symptoms affect multiple parts of the body that fall within different medical specialties. Quote Link to comment Share on other sites More sharing options...
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