Diagnostic Test Routines
Submitted by Garden One on Sun, 02/17/2008 - 15:44
As some of our members already know, I have nerve damage from a progressive infectious nerve disease. It has affected my central nervous system, spinal cord, joints and extremities. But that's not the problem.
I went from doctor to doctor for more than 20 years complaining first of headaches and daily fevers. Each time I was told there was nothing wrong with me and that it may have been a touch of flu or a cold. I was fortunate in that I could take care of my daily tasks and perform my job duties as needed. Yet, I knew I wasn't well and was slowly getting worse.
Every doctor I went to sent me through a regime of similar tests. I began to suspect that I was being used as a cash machine where each of my symptoms were analyzed and I was then sent for every test that could be billed under that symptom code. My headaches worsened, huge bruises appeared for no reason, my memory began to fail and I began to miss work.
My family became more and more concerned about my condition and finally decided to go with me on every doctor visit, which the last doctor immediately resented and questioned. The last doctor I went to before finally being diagnosed at Johns Hopkin Hospital (JH), told me I was a malinger and should just go back to work.
All the time I was seeing one doctor after another and being sent through endless machine tests, I was never diagnosed or treated. During this time and unbeknown to me, my condition was worsening. This seemed to be an endless treadmill of doctors, tests and insurance --not to mention astronomical costs and charges. I finally became so ill I could barely move from my bed to a chair. That's when my family set an appointment for me with a specific neurologist at Johns Hopkins. In less than a week, JH called me with test results and a diagnosis and explained my progressive nerve disorder, prescribe a treatment plan and arrested future damage.
What I draw from this experience is that our health-care system seems to trap doctors and patients into a system of codes where doctors get paid not so much for health care, but for matching symptoms with exams approved by the federal government in the forum of insurance, Medicare and Medicaid. At least in my case, I seemed to be a cash cow (as long as someone else had not done the same diagnostic/machine exam within the last year) and a bother if I dared question what was going on with my own health or the lack of diagnosis and treatment.
During the last couple of years before my diagnosis, I became afraid my doctor might refuse to see me or send a negative report to my employer. I am eternally grateful to my family for insisting I go to a leading-edge health care facility and for the neurologist who took the time to practice patient care rather than follow the insipid symptom code vs. diagnostic codes set up to 'protect' us and to enrich insurance companies and doctors.
I can only imagine what might have happened, if I had not had family to make the rounds with me when I was too ill and too weak to do it on my own. If you're in a similar situation, ask lots of questions go to the best medical center you can afford. Refuse to take endless diagnostic tests without a complete explanation. Ask why? Insist on getting a copy of all results/reports for every examination. If you cannot do it on your own find a friend or family member who will go with you.
From the Doctor's office
Most of you know that I work as a Medical Assistant at a small family practice. I agree that we each have to be our own advocate as to our health, however. I want to give you all an inside perspective as to why Doctors do what they do. (please don't get mad at me for this!!)
Let me start by saying that there are a lot of doctors that I wouldn't say don't care, but maybe their not well informed.
Patient #1 is grossly obese with a diagnosis of PCOS (Poly cystic ovary syndrome) this patient's main concern is to loose weight. Patient comes in for councling on gastric bypass. Patient is not being treated for the PCOS. Why has patient not questioned why they are not being treated for the PCOS. Does the patient know what it is and how it can be treated? One of the things with this is weight gain! Ok, so instead of sending this person right to the surgeon for a major operation, why don't we try to treat the (probable) underlying cause of the problem? Dr #2 sends the person to an Endrocrinologist for treatment.
So with patient #1 they weren't educated on what the disease they had was doing to their body or treated for it. (I don't blame the PCP here because they were not the diagnosing Doctor, but I do blame the diagnosing Doctor for not telling the patient that they have a very treatable thing!)
Patient #2 - complains of weakness in their right arm, which at the time of the appointment told the Dr that this had been going on for at least a month. Doctor sends said person for x-rays, nothing shows. Dr sends patient for physical therapy for strengthening exercises. Patient follows up and says no improvements. Dr does blood work. Patient has a history of high cholesterol, for which patient refuses to be treated for. Dr recommends patient not drink alcohol and watch diet more close to try to bring down the bad numbers. Patient comes in a few more times with same complaint. Doctor tells patient really need to get the cholesterol under control. Patient refuses to quit alcohol or change diet or try medications. A month later this patient dies of a massive stroke. Who's fault is this? Not the doctor's.
We have to not only be an advocate for ourselves, but we also need to take the advise of the Doctor and use it to our advantage. They can only guide us as to what to do, we have the ultimate choice in our care. If we choose not to follow their advise we are at fault.... Not the doctors.
Al, I must have missed this somehow.
Very sorry to hear of your health problems....
Dear Al,
I'm very pleased that you finally got a "right" diagnosis! I will keep you close in my thoughts & best wishes. But, what an unnecessary fiasco! I think, in many cases, we all become money cows to be milked of every penny the Dr. can think of. Just knowing what is wrong will be a great, huge relief, and should give you the ol' fight spirit. Do take care,
Your friend,
maw
Annette/ maw Photo Editor
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Thanks AL...
I know what is like for misdiagnosis or laziness on the doctors part. My father went to his doctor for pain in his shoulder. First his doctor told him that he strained a muscle and gave him a steroid shot. Then the doctor told him that he had tendinitis and treated him for 3 years of weekly steroid shots in his shoulder. This was all so that he could go to work every day . Then he got so weak he couldn't hardly do anything. So we took him to a larger hospital out of town (about 2 hour drive). Within 2 hours they diagnosed him with cancer. The cancer had grown so much that there was nothing they could do. So they started him on Morphine for the pain. Within 3 weeks after finding out he had cancer, he passed away. I blame his doctor for basically not doing his job. And the doctor giving him the steroid shots in his shoulder (where the cancer was) only made the cancer grow faster. It is a crying shame that the doctors today don't seem to care about anything but the money they get.
Melissa
Every act of kindness moves to a larger one till friendships bloom to show what little deeds have done.
***June Masters Bacher***
Every act of kindness moves to a larger one till friendships bloom to show what little deeds have done.
***June Masters Bacher***
What a harrowing journey
What a harrowing journey Al! So glad you were finally able to get a proper diagnosis. It is incredible in this day and age, that so many "doctors" have the credentials, but no idea on how to actually interact with and treat a patient.
Having a close friend or family member go to the doctor with you is a MUST! Especially if you are having problems getting a correct diagnosis or repeated expensive tests and procedures. If you can't get a straight answer from your doctor, you are seeing the wrong one.
My DH gets what he calls "white coat" syndrome. He sees the doctor and simply can not remember what all he wanted to ask the doctor about, and can not recall what the doctor told him afterwards.
DizzyD %-}
My DH gets sick of dealing
My DH gets sick of dealing with doctors.....they shuffle him around from place to place and act like he has no need or reason to know what's going on or why they are prescribing things for him....although some are pretty self evident (blood pressure, cholesterol, stroke prevention,) but he always tells me that doctors PRACTICE medicine.....and what that means is that they are PRACTICING on us. I think nothing short of socialized medicine will enable everyone to get a respectable level of care. The way things work now is either you have cracker jack insurance for which you pay a bloody fortune and are financially able to pay what isn't covered or to pay for an outstanding supplement, or you have mediocre insurance that might or might not cover things, and when they don't cover basic diagnostic stuff, they wind up paying out a hell of a lot more in the long run because they could have prevented a lot of stuff if they'd dealt with it during the diagnostic stage. Then there are people who rely on the government for their health care. If you are unlucky enough to have to deal with medicaid, you can expect never to have a blood test or anything that has anything to do with prevention. Your physical will consist of the bare minimum, and when you are really sick and the doctor can't see you, you wind up in the ER at whose expense? We all know the answer to that!
Susan, the Texas Yankee, the Texas Rangerette and the Assistant Site Manager/Administrator
Click here to see my trade list: http://www.gardenhere.org/node/271Susan,The Assistant Administrator, the Texas Yankee and the Texas Rangerette.
Thank you, Al.
Thank you for sharing, Al, and for helping us to remember, not only to question our own medical care -- but for encouraging us to take along an advocate.
Doctors often do not like it when they are questioned, but if they are not able to handle honest communication and questions, then you just have the wrong doctor. Too many of the doctors take offense at a patient's efforts to understand the illnesses that plaque us. I had one tell me that he wishes people didn't look things up on the internet, the whole while he was treating my parents poorly -- and after he came right out and told me that he thought "allergists are a fad."
Needless to say, I got away from that doctor as quickly as possible. Thank you for sharing your own medical journey. Too often, doctors who don't understand you - think it is "all in your head". It's like, if they can't fix it, it isn't real. Remember, the doctors are human, they make mistakes.
I've come to agree, that when it comes to serious issues, I prefer to seek medical help from the best doctor that I can find -- and I need my family to advocate for me -- as I have for my parents. Without family pushing (which has sometimes lead us to be labled as "difficult"), my Mother would have died back in 2001. She's still here.
Thanks for sharing Al. I know it is difficult to discuss one's own health issues -- and you've been very private about it, and those of us who know you've been so ill, have surely tried to respect that privacy. However, your experiences and guidance will surely help others to avoid some of the same pitfalls. There is also some comfort in knowing that we are not alone.
Remember, in health care, as in other areas of life, you are the consumer. Consider yourself the customer of the doctor's service. If you are not happy with the service you (and your insurance) are paying for, then shop elsewhere. You have a vote on your own care - by choosing to seek care elsewhere. (That's why I want nothing to do with an HMO if I can help it.)
We hope you continue to improve in health and at least, that there is no more damage. Thank God for the doctor you found.
T
Theresa
I've come to discover that
I've come to discover that there are times when doctors genuinely do care, but the insurance industry is such that they refuse to pay for things that would diagnose illnesses and prevent doctors from doing basic preventative care and preventing patients from knowing what's wrong with them. I've been there -- with really lousy insurance. Sadly, I was in a situation where doctors couldn't do the necessary tests to find out what was wrong with me because the insurance wouldn't pay for it. Every now and again, if you're lucky enough to be in close proximity to a state hospital, they will take you on as a patient and do what is necessary to find out what's wrong with you because they are obliged to do so as a state facility.
Al, I'm glad your family dragged you to Hopkins. I know that the place is outstanding in many areas....as you know, my sister was treated there for breast cancer. I'm horrified, though, that you had to suffer for as long as you did because no one would take the time to figure out what was going on with you!
I cannot thank you enough for the gift of this site that you've given to all of us, and the faith you've placed in me by allowing me to assist you..........Now you better take advantage of the new found help you have! Please?
Susan, the Texas Yankee, the Texas Rangerette and the Assistant Site Manager/Administrator
Click here to see my trade list: http://www.gardenhere.org/node/271Susan,The Assistant Administrator, the Texas Yankee and the Texas Rangerette.
Some doctors do not care
My heart goes out to
My heart goes out to you....I have been on this run around with health issues for two years now...one test after another...and the last dr. telling me it is all in my head...I have no insurance ...so all costs has come out of our pocket...we sold our home and went though near 50 thousand thus far with no answers...I told my husband soryy but no more ...I take it one day at a time and have gone now onto nautual health care people and seem to be doing better...thanks for posting here and sharing ...you have a wonderful family..
[img_assist|nid=1484|title=Gardening|desc=|link=popup|align=left|width=165|height=200] Y'shua is My Boss "So then neither is he that plants any thing, neither he that waters; but God that gives the increase." 1 Corinthians 3:7
Al thank you for sharing
Al thank you for sharing your health journey with us. You gave very good advise to go by concerning alot of the health professionals. As you can attest to, there are still some genuine health care providers still left, you just have to find one.
Currently my younger sister is having some health issues. The other day the doctor ordered an EMG for her. After the test and I said after my sister asked what the test was for. The doctor was checking to see if she had neuropathy or so they said. She told them that I (Dale) has neuropathy and my symptoms do no include numbess and tingling in my extremities. If she had asked before the test she could have saved some time and money. Dale
Dale, Photo Team Leader & Good Will Ambassador