What to do when you can't get a diagnosis
So, you know something is physically wrong, but your doctor can't seem to diagnose it. Despite your pain, chronic digestive problems, or other very real symptoms, all your tests keep coming back clear.
Such medically unexplained symptoms can be frustrating and frightening - and they're more common than you'd think.
Why diagnoses aren't always clear cut
Despite all that modern medicine has to offer, not all lab tests provide conclusive results. Nor can all medical conditions be conclusively diagnosed.
Unfortunately, some require a "diagnosis of exclusion" once everything else has been ruled out.
In addition, sometimes there's more than one medical problem at work, which muddies the waters. Other times, symptoms can be the manifestation of early disease that isn't yet diagnosable.
And, of course, there are limits to doctors' knowledge. Neither primary care physicians nor specialists know everything, and there are still unknown diseases out there. Sometimes, it takes a village.
How to advocate for answers
It's normal to get discouraged, especially when you don't feel well, but don't stop pushing for a diagnosis.
There are things you can do to move things along, including:
• Keep a health log documenting your diet, exercise, stress levels and symptoms throughout the day. You or your doctor may uncover a pattern.
• Don't keep secrets from your doctor. Smoking, binging, failure to take your medications - this is all critical information and will be kept confidential.
• Learn to describe your symptoms in highly specific terms. Is the pain throbbing, dull or stabbing? Where exactly do you feel it?
• If you hit a brick wall with your primary care physician, get a second opinion. Before consulting a specialist, consider a strong generalist who will work through the possibilities in a logical order. (Yes, they will duplicate some of your prior doctor's efforts - but that's due diligence.)
• When seeking a second opinion, request referrals from trustworthy sources. Don't limit yourself to your doctor's referral network; ask around so you have two or three options to choose from.
• Similarly, seek out specialists, but know that if your problem is out of their area of expertise, they may not have answers for you, either. Be prepared to make some rounds.
• Care coordination is critical. If your providers aren't communicating with one another, turn to other resources - like private patient advocates and care managers - to fill the breach.
• If you conduct online research, stick to reputable websites, like those hosted by health care organizations, universities and government agencies. Patient education is a good thing, but don't let your imagination run wild.
Just don't give up on improving your health and quality of life. There are answers out there, and you deserve to have them.
• Teri Dreher, RN, iRNPA, is a Board Certified Patient Advocate and pioneer in the growing field of private patient advocacy. A critical care nurse for more than 30 years, today she is owner/founder of NShore Patient Advocates, the largest advocacy company in the Chicago area. She was awarded her industry's highest honor, The APHA H. Kenneth Schueler Patient Advocacy Compass Award, in 2015. She is among the first in her industry to earn the credential of Board Certified Patient Advocate (BCPA). Her 2016 book, "Patient Advocacy Matters," is now in its second printing.