What My Misdiagnosis Taught Me About Uncertainty and Trust


I'm learning about uncertainty.

I no longer have a reasonable medical explanation for my own experience. An extensive battery of medical tests gives no physical evidence of brain dysfunction. Laboratory results for many of the usual and unusual causes of cognitive impairment have been normal several times over. Two different MRIs of my brain have been negative for brain tumor, stroke or hydrocephalus. Two PET scans give no evidence of Alzheimer's disease or even dementia. And, most disturbing to me, recent neuropsychological testing shows no evidence of any cognitive impairment at all. So intensive medical examination that would be expected to explain my symptoms cannot.

There are no more tests to take. I must learn to live with the uncertainty.

In the past I've not liked uncertainty, but this time it hasn't been so bad. Whatever my impairment is, I've learned a lot over the past year about accepting uncertainty. Despite the uncertainty, I'm actually a lot happier than I was two years ago.

I can only wait and see what develops. Either my symptoms will get better, or they'll stay about the same, or they'll get worse.

If they get better, I don't think I'll really care much about what caused them. If they stay about the same, I'll probably never find out what's causing them, but I'm in good enough shape right now that life would be fine. If my symptoms get worse, the physicians will eventually find evidence of my impairment if not a cause.

So, I just have to wait.

I can partially explain my acceptance because—regardless of why my brain function is slowed—there's no treatment anyway. So the waiting becomes more of a spiritual discipline, a training period for living in the here-and-now and accepting the world as it is.

I'm learning to trust myself .

I'm a child of the Enlightenment, which accepts as definitive truth only things ultimately provable by physical evidence; according to that philosophy, just because I experience something doesn't mean it's real. It could be a mirage, a misunderstanding, a hoax, or all sorts of things that would make my own experience unreliable.

As a physician, I had too many patients whose story simply didn't match the evidence I had. True, for many of them their symptoms were psychosomatic: very real, but due to emotional (not physical) causes.

Some of those contradictions were later resolved by re-examining the lab or x-ray tests. But some were just mysterious.

Unlike most physicians, I suppose, I felt responsible to believe those mysterious stories, trusting my patients' experiences even if I couldn't explain them, yet.

Trusting my own experience in the face of contrary objective evidence, however, is new for me, and it's taking a little bit of practice to get used to it.

I know I'm experiencing cognitive impairment. I trust that it is real, despite the evidence. I'm choosing to trust myself more than the evidence.

This isn't easy for me. Even writing this I feel defensive, vaguely guilty. (Just for you who worry about me, I don't believe I'm guilty of anything; it just feels that way.) But this past year of living with uncertainty about my future has given me some small confidence to trust that I'm okay in the here-and-now.

When I live in the here-and-now, uncertainty about the future ceases to matter.

Editor's note: David's journey with Mild Cognitive Impairment was chronicled in "Fade to Blank: Life Inside Alzheimer's" an in-depth look at the real lives of families impacted by the Alzheimer's epidemic. His story continues on his personal blog on AgingCare.com.

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer's but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

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I enjoy reading your thoughts and progressions through you battle of life.
I believe we should not separate our emotional self and physical self. each is just a different function of our brains,both are needed for our existence. It is easy to see the results of an infection not so easy when we are talking about changes in how we perceive the world around us.You have symptoms which currently can not be explained not are the limitations your body has set up easy to explain. The best thing each of can do is continue, live to be best each of us can share our experiences . Doctors do not know every thing and tests are not always conclusive.Each of us knows our body better than any one else and it is through this lens we ask others to try to understand our limits, pains etc. Keep sharing with the rest of us your thoughts and feelings as you continue through your life.
Aw, Doc...no need to feel guilty about being a puzzle patient, though as one myself, with several patients I take care of still undiagnosed, I sure understand that! Autoimmune disease been looked at? Any kind of infection you have anywhere? Some of the seronegative sponyloarthropathies in particular can have brain effects that might make you feel fuzzy and unreal rather than being profoundly impaired, without a lot of trouble elsewhere, and would not show up as anything localized on a PET scan. "Gluten ataxia" is a real syndrome that could do that too. I have a few mystery patients like this with normal MRIs and can't seem to get one of them who really wants a better answer an fMRI . Inflammation does funny things to the brain as we get older and might be treatable.
just get ya a dunce cap and move to the rear of the class. men get slow in the head at a younger age than women. im 55 and getting dumber'n a spatula. i dont even ask customers names cause i wont remember and really dont care. its like; 'yo, pay me ' .