One of the most frustrating things to hear from your doctor as you struggle to get a diagnosis is: there’s no simple test that is definitive. If you have a disease or condition like MS, celiac disease, MCAS, IBS, or any other autoimmune or dysautonomic dysfunction, you’ve may have heard similar things for YEARS while symptoms continue to diminish your quality of life.
Worse still, without a diagnosis, family and friends may begin to treat you like a hypochondriac. This can lead to trying to talk you out of your symptoms, treating you like you’re crazy, or refusing to honor dietary requests. A lack of diagnosis certainly doesn’t help you get the support you may need.
Even though skepticism has grown around some scientific areas, most of us go into a diagnostic process believing we will come out with a definitive answer and a treatment plan. We have a sense that our doctor is as curious as we are to get to the bottom of the problem. This may sometimes be true. Often it’s not.
Sometimes because of a lack of imagination or curiosity, but often because of the limits of the tests themselves, one in 13 (almost 27 million) Americans are living with an undiagnosed disease. That number rivals the number diagnosed with diabetes. It’s almost 10 million more than the number who have been diagnosed with cancer.
Understanding the limits of testing may not get you to a specific diagnosis, but it can help you know what is still on the table even if your numbers look “normal.” How can you find those limitations?
Ask questions!
Hopefully you are already working with a health team that considers you an integral member. If not, you may want to consider a change. If so, you may still need an advocate to go with you to appointments.
When you’re the patient, there’s a lot to think about. You may become too absorbed in navigating the physicality of an appointment to ask questions for yourself or absorb the answers you’re given.
Prepare a general outline for your advocate and tell them your goals. They can help you get the answers you need.
Here are a few things you’ll want to cover:
Ask what specific tests are being done. Write down or text yourself the answer. You can look these up later.
Ask how the specific tests were chosen – the doctor is going to use their experience to get to a beginning theory of what’s wrong.
From that point, they’ll either get positive results or begin to eliminate things that aren’t wrong. All of this narrows the field of likelihood. But sometimes, it doesn’t mean you don’t have something. It just means they can’t be sure. Ask how specific the test is. Ask how accurate it is or what percentage of cases it catches.
Ask what the best next step is.
If you don’t like the approach, ask if there are other options.
Get another opinion to confirm.
Once you begin a treatment plan, give it time to work. If you are not getting positive results or you’re suffering from side effects worse than the disease itself, you may want to have your doctor revisit the plan.
It would be wonderful if there were perfects tests for every disease and condition that exists. There simply aren’t. But there are always new ones in development.
Without perfection, our best line of defense is information. Ask, and ask, and ask until you have the information you need.