When I had to secure a new general practitioner recently, I was reminded of how taxing finding a good doctor can be when you have a mystery diagnosis — hurdles that I largely conquered in the ’90s. The fact that the aforementioned doctor ″highly doubted″ I had chronic lyme disease — all within five minutes of our introduction — was of little practical consequence now, yet it was a touch unsettling.
Had I needed antibiotic therapy, for example, it could well have been a serious issue. As such, I nearly shivered when I reflected upon my arduous journey for medical answers as well as recalled stories from undiagnosed victims that I met along the way. Nightmares, mostly, that I had largely forgotten…on purpose.
The road from mystery to diagnosis
Unlike many patients lacking medical answers, I no longer need to prove my medical status for treatment, to help loved ones understand, to satisfy medical boards, or even to relieve doubts as to my sanity. Some 12 diagnoses and 35 pounds in medical records later, responses like, ″How is your marriage?″ or ″But you look well,″ are nonexistent.
Yet, much was learned as I first traversed 11 doctors and the Mayo Clinic to learn why I had ″the flu that never went away″ — along with additional oddball symptoms that spanned multiple medical disciplines.
Foremost, employing a medical war strategy — as it can feel akin to — can help one land a proper diagnosis and treatment more readily. Much of this is based on finding the right doctor and effectively relating your concerns.
Finding the right doctor
You may need a referral from a general practitioner and in a utopian medical world these would be optimal. Personal referrals are very important as well, derived either locally or via support groups.
As a former patient advocate, I found that individuals with a mystery diagnosis of common and/or multisystemic complaints (e.g. fatigue, stomach, and joint pain) fared better overall with internal medicine physicians.
These professionals excel at ″the big picture.″ As thorough diagnosticians, they can save both time and money even if you’re ultimately referred elsewhere.
Additionally, make a ″just-in-case″ appointment to see an in-demand specialist, if appropriate.
Improve your chances for a diagnosis
For a new visit, be prepared for skepticism and the misuse of Occam’s razor. But before you throw Hickam’s dictum at him, consider these tactics:
–Define your goals. Is a diagnosis needed for treatment, peace of mind, and/or a disability claim? Be upfront with your doctor in this regard.
–Keep a thorough symptom journal to include times, duration, severity, and circumstances. (This will prove useful for disability claims too, should you need it.)
–Prioritize and isolate the three symptoms that affect your quality of life most. Having the doctor scan the full list can help also.
–Be honest. Attempting to hide depression, stress or embarrassing symptoms will likely backfire and lessen your credibility.
–Strike a balance between doormat and demanding. If you need another minute of your doctor’s time, ask for it…before her hand is on the doorknob.
–Recap the plan of action. Note what tests are being performed and why. Ask what to expect next.
Lastly, don’t put too much emphasis on pinning down a label for your mystery diagnosis unless it affects your treatment, recovery, or disability claim. This doesn’t mean giving up hope for answers, but undiagnosed patients need a medical ally foremost — a health professional who aims to improve quality of life and address practical concerns.