Can't get a proper diagnosis?
Written by Jennifer Rendfrey
Frequently, patients complain about health issues that don’t seem to have a place in the medical books and quickly the patient becomes a victim of Western Medicine dogma. Health care is already a complex issue, and compartmentalized approaches of western medicine paralyzes the physician from identifying the root causes of your health and providing a comprehensive plan. Instead, the doctor follows a sequence of if-then statements, missing the subtleties, and ultimately miss the diagnosis. A misdiagnosis results in the proper health care being delayed and such delays result in months or years of sickness. How can a patient prevent this?
Here is a list of things you can do:
1 - Start with the IDC-10 codes on your medical records. IDC-10 codes are used by the medical industry to communicate diagnosis. Once these codes are on your records they become hard to undo. As an example bile reflux often gets coded under an acid reflux. Doctors continue down the path of acid reflux because they follow the IDC- 10 code.
2 - Trust the google searches and the forums to the extent of formulating a hypothesis. Force your doctor to dispel the hypothesis in a scientific and understandable manner. Misdiagnosed patients often end up on google forums out of desperation. Compare your notes. If you feel the symptoms are the same then this is a good place to start. Use your google searches to give you information to ask questions instead of playing “google doctor” which will result in you being ignored.
3 - Find an advocate. The doctor often decides in a unilateral manner what information will be given in regards to diagnosis, treatment, and education. This sets the stage for provider dominated communications and views. It's hard to back out of this provider dominated relationship. However, an advocate can help. Find someone that is not emotionally involved, understands the medical industry, and can use common sense when navigating the healthcare system. Many argue this should be your primary care physician. However, I personally prefer a nurse that sits in an independent role.
4 - It takes a team - Now that you found an advocate, start putting together your team. This will take a lot of leg work as you need to find the doctors that are willing to work with you and your advocate. Look outside of Western Medicine for additional teammates. Explore functional medicine, precision medicine, and other subject matter experts that are willing to work in a team setting. Coordination of care among your team will get you far.
5 - Medical records are KING - Do not leave your appointment without a copy of your medical records. Keep your medical records on a flash drive and take it to every appointment. In addition, make sure you sign a medical release form and HIPAA for every practitioner on your care team. A doctor can not speak intelligently to your diagnosis without all pertinent pieces of information. Do NOT rely on the front desk to relay all this information seamlessly.
6 - Don't pay the bill for a misdiagnosis. If you're not getting better and you feel confident you're being misdiagnosed then this is the place to take a stance. The person that holds the money typically wins. Once you pay the bill you will lose almost all leverage in obtaining an accurate diagnosis. The best way to do this is negotiate before your appointments. Make it clear you feel you're being misdiagnosed and you are seeking a proper diagnosis. The front desk and office manager will absolutely fight back as these are uncharted waters. If they aren't willing to agree to move in the direction of an accurate diagnosis then you might be in the wrong doctor's office. Put it in writing, your treatment needs to show the search for a proper diagnosis.
7 - Be angry, Be hopeful - Remaining sick for extended periods of time will wear on you, and you have every right to be angry. Don't let anyone tell you that always remaining positive is the only way through your illness. It's NOT. You will have moments of anger, deal with the anger in a constructive manner and don't keep it bottled up. Tell your doctor you're angry in a constructive manner, as it is warranted. A good doctor will understand. Remember they feel the confines of the healthcare system too and will understand. Again, if they don't understand then you are with the wrong doctor. Lastly, and most importantly there is hope. If you continue to push the system and demand precision care you will find yourself on the right track.