The Diane Rehm Show

This is so true, I get most of my information from requesting my medical records and searching the internet. The GI that couldn't wait to do the liver biopsy, ct scan, endoscopy and colonoscopy wasn't heard from for two months even after repeated calls for results. Even when I went back in for the follow up two months later he grimly states your liver looks like this and points to a picture on his wall, says I should go to the Liver transplant center just to get my 'name known'. I asked what that meant? He says well, it's good to visit them and get to know them. He never made the follow up appointment until I called the transplant center myself after reading my liver biopsy results. Good grief, I think they will just let you die sucking every procedure they can out of your insurance and not following up. Thank goodness I kind of feel better after being placed on some medication to reduce ammonia in my system.

mcboom- You are not the only victim as we number in the millions. But I understand what you're saying: There is no one you can sue, and no one you can confront. Superindividualism always dumps on the isolated individual. (You should have planned better. Take personal responsibility.) It sounds to me from your account that you assumed plenty of personal responsibility without effect, and that you were extremely prudent in continuing to the correct diagnosis. My gracious, we care nothing for eachother anymore. And whose fault is that?
(indoctrination, miseducation, intimidation, discreditation, financial extraction, wealth agglomeration.... glory of glories!)
Transplants are an even more perverse can of worms. I wish you the best.

as an er doc, there's so much right with what they say, esp about giving a concise, chronological history, and be specific- not "oh a little while", but instead "4 hours" or "2 days ago". don't exaggerate to get your doc to take you more seriously, and by that I mean don't add extra symptoms in- if youre there for abdominal pain, don't say "yeah I have a little chest pain too, and it kinda hurts when i pee"- the more confusing the story, the more the doc will just throw up his hands and order a cat scan, for example. and as far as getting a diagnosis, i agree- don't be afraid toask "don you think it's nothing?" or "do you think I will be alright?" realize what a time pressure it is being a doc- youre always behind, youre always pressured to hurry up. also there are some things wrong with what your guests say- for example, ER docs in community hospitals are in a different fix than your guests- we are not tenured, we not are not even employees but independent contractors, and if we are slower that the other docs we don't get any shifts next month. if we don't ask alot of yes or no questions, we can't fill in those check boxes on the EMR (electronic med record), and the hospitals can't bill as much, and we don't get shifts next month. also realize that until there is real malpractice reform, docs will always be strongly inclined to order too many tests or procedures- most all court cases have a plaintiff's attorney starting off with "why didn't you order a cat scan?" or "why didn't you do an immediate c section?"

I know from painful experience that medicine is an art. The most important characteristic of a medical artist is the ability to diagnose a patient prior to testing and having testing confirm it.

Last January I had a severe fall and a concussion and brain bleed. I attributed the fall to arthritis. I delayed seeing a neurologist until the spring. I saw a physical medicine specialist first, who referred me to the neurologist in Houston. All summer that neurologist tried to guess a diagnoses. He kept me off work unnecessarily after I had a fall at work. I finally left his office crying.

I waited two months to get an appointment at the Baylor College of Medicine Neurology Clinic in Houston. It saved my life. The young physician there diagnosed me in twenty minutes with a rare auto immune disease called stiff person syndrome. The follow up tests, though extensive, confirmed her diagnosis. I am now being treated with Gama globulin infusions and have improved. Bottom line: Go where the knowledge is and hope that you are treated by a medical artist!

I so appreciate your guests and their valuable book! I think my doctor must have read it some 30 years ago! When my husband and I were expecting a baby we went in search of a GP who could provide prenatal care and delivery. We asked a friend who was a nurse in the maternity unit of the hospital we were hoping to use when the time came for the birth, who she would recommend. We told her we wanted someone who took a more natural approach, was able to work well with his/her patient and had good bedside manners. She kept coming back to the same name, Dr. Mark Nunlist, and we took her good advice. Not only was his care and approach fantastic for our prenatal and birthing needs (sadly, his practice no longer handles these) He has been a great family doctor all around. And the thing that has really set him apart in my mind- he has always been a really good listener. We could not be happier with his helpful, thoughtful, practical advice and care he has given our entire family these past 26 years! I expect he will probably be retiring soon so I hope lots of folks pick up this book by your guests and usher in a new era in health care where doctors like Mark Nunlist become the norm rather than the rare gem!

Thank you SO MUCH for covering this topic and your guests.

Fifteen years ago, I was very ill with undiagnosed Celiac Disease. I had suffered with very painful, yet typical symptoms of Celiac. I went to at least five different doctors and had many tests and was prescribed many drugs with their own awful side-affects. Most of the time, I was told it was all in my head.

Long story short - I took charge of my own health, began searching for causes, instead of having symptoms treated. I saved my own life and my son's life. He also has Celiac.

My son and I have been gluten and dairy-free for almost fifteen years. It is still a daily effort, because of unknown cross-contamination, but we are both much happier and healthier, than we were when we depended on doctors to find a cure, rather than treat symptoms.

It was too late for my mother. She died when I was 17, after suffering for years with the same symptoms that I know very well, including mental symptoms. Her life could have been so much better, if only she had been listened to by the people she thought were there to help her.

Like one of your callers, I felt guilty for years, for not understanding her pain and the mental anguish she went through.

Since some of her gluten-intolerance and/or other allergies symptoms manifested as anxiety and paranoid schizophrenia, she was prescribed various narcotics (never told about side-affects and suffered even more), then at age 51 died, locked away all alone, in a mental hospital.

Before I end this comment, I have one request - since about 1 in 133 people now have some form of gluten-intolerance and probably even more for many other food-related illnesses, would you please have more programs that address this subject?

Thanks again for having programs like your first hour today.

susan barry,
Re: electronic medical records: You could not be more incorrect. Properly composed and organized records, especially maintained electronically, provide an excelent source of diagnosis and effective testing and treatment. e.g. Imagine you arrive unconscious at a facility and staff start treating you, unaware that you have allergies......latex, various drugs and antibiotics et al. Would the records not save you misery and even loss of life? Electronic records offer significant advantages for fast and more accurate review, especially in emergent situations. Also consider the actual time saving involved in not repeatedly re-describing family history, personal medical history, current immunizations and prescriptions.
IF a person were permitted to carry with them a thumb drive filled with proper data (as is currently done in the military), the patient and family members are saved tons of time, along with staff time, AND avoiding the inevitable errors, omissions, and incorrect, unnecessary tests........in other words......MONEY is saved too.