Part 4: Testing negative
Iatrogenesis
In my mind I kept going back to cancer. As a survivor of that disease, I’ve always held a certain fear that it would recur. I asked my primary doctor for Image may be NSFW.
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a referral to an oncologist, which he gave me. While we were waiting for that appointment, I had a regular follow-up appointment with my endocrinologist. I described the muscle spasms, the weakness, the weight loss. I told him about our appointment with the oncologist.
There’s no harm in doing that, he said. But it sounds to me like you ought to see a neurologist.
A neurologist?
Really?
That came as a genuine surprise to me. I thought of neurologists as people who do brain surgery. Which is to say I hadn’t given them much thought at all. I had certainly never taken the trouble to think through the fact that disorders of the nerves that run through our bodies are the specialty of neurologists. It had certainly never occurred to me that nerves are the mechanism which trigger muscle movement. When I experienced a muscle spasm, that was a neuromuscular event.
The thought of needing a neurologist alarmed me more than anything else had thus far. While I didn’t like to be going to an oncologist, at least that was familiar territory. Neurology was something else altogether, a land of unfamiliar and truly frightening possibilities.
I began reading about the possible causes of muscle twitches and spasms. They ranged from benign to awful. I learned the word fasciculation. I learned that muscle fasciculations were an early sign of ALS. I didn’t know much about ALS. Not yet. But it sounded awful.
I certainly didn’t think I had that.
The oncologist considered my history, did a brief physical exam and said that although he had no explanation for my weight loss, it seemed unlikely to him that the cause of my problems was a recurrence of the cancer. What about Multiple Myeloma, I asked? I’d been reading about this form of cancer, how it could strike people who had been previously treated for and recovered from cancer.
I started tracking down the research on the long-term sequelae of testicular cancer and learned the rate of recurrence was significant, years and even decades after the original treatment. And of course it was the treatment itself which could be the cause…radiation kills cancer cells but it also causes cancer.
There’s a word for that: iatrogenic. It’s a complex and, to me, an oddly beautiful concept. It speaks to the hard truth that the art of healing creates opportunities for the development of new illness.
It can happen in many ways. Gathering patients together in hospitals and clinics concentrates communicable diseases in one place and gives them the chance to spread. The invasive nature of many medical procedures also creates opportunities for infections. And, as with cancer treatment, there are times when the only thing that can heal us is something that simultaneously does us harm.
It’s a term that mental health professionals rarely use…although it probably should be a part of our vocabulary. The reason we don’t use it is in large part due to the nature of the diagnostic system for mental disorders. Unlike medical diagnosis, the DSM is agnostic as to the causes of mental disorders. It seeks only to identify them, not (with a few small exceptions) to identify what led to them.
Although this makes for a clearer diagnostic manual, it belies a deeper human truth. Because whether a diagnosis is medical or psychological, one of the first things anyone asks upon receiving it is: why?
In my case, I was looking at causes precisely because I didn’t have a diagnosis. I was starting from the most logical cause I could locate in my history. Which was cancer.
It was a decent theory, which was only strengthened when I read an account of another testicular cancer survivor who later developed Multiple Myeloma. His first symptom? Muscle weakness.
I asked the oncologist if I could have it.
Not likely, he said. If so it would have shown up on your blood tests. Nevertheless, he said, with your history and your symptoms it’s worth doing some scans.
So I had chest and abdominal CAT scans, which came back showing no major abnormalities. Although, he said, there were a few small spots here and there. A lot of people have those, he added. Usually they’re benign.
Still, he said, it’s probably worth following-up with another scan in a year, just to be sure.
Imagining the worst
So was cancer ruled-out?
It wasn’t clear. Cancer wasn’t the likely cause of my problems, but there was certainly room to worry. If I chose to.
To put this another way: is a diagnosis – or a diagnostic rule-out – valid if the patient doesn’t believe it?
Does diagnostic certainty require consensus?
In many cases, particularly in cases of a clear affirmative diagnosis, the answer is obviously no. A malignant tumor in the brain means brain cancer, even if the patient happens to be in denial about it.
But it’s a different situation when it comes to rule-outs. If you test negative for cancer (or for MS, or Lyme Disease or Celiac), but you’re still experiencing the symptoms of that condition…if you don’t fully trust the results of the tests…if you still don’t have an adequate explanation for why you feel the way you do…then in certain ways nothing is ever ruled out.
After all, you can’t disprove a negative.
With each new test suggesting that I didn’t have this or that disease, the thought began growing in the back of my mind. What if I just happen to be hyper-sensitive to the early signs of whatever condition this is? What if it hasn’t grown strong enough yet to show up on the tests? Do I just have to wait until things get worse before I can get diagnosed and treated? Isn’t the value of early detection supposed to drive effective treatment?
These questions were only going to grow more pointed and more maddening.
The first available appointment with a neurologist was months out in the future. While waiting, I tried to diagnose myself using the information I could obtain over the Internet. I learned a lot, in an unstructured sort of way which left me wide open to bouts of pure panic. About ALS in particular. Because any search of my primary symptoms – muscle weakness, fasciculations, weight loss – always led me straight to ALS. The more I let myself recognize that this was possible, the more aggravating it became that I couldn’t get a timely appointment with a specialist who was qualified to diagnose it.
“We’re not a critical care facility,” the receptionist at the neurologist’s office icily informed me when I called to push for an earlier opening.
It was disturbing to realize what a powerful role the simple task of scheduling an appointment could play in the diagnostic process. “Early detection” may be the stated goal of healthcare professionals, but because detection can’t happen without examination, it hinges in a concrete way on the mechanics of scheduling.
We learned that a new neurologist was moving to our town and my wife managed to get me an appointment with her on her first morning of work here. Arriving in her office felt like an epic accomplishment. Here was a person, I let myself hope, who could finally tell me what was wrong with me.
She listened to my story and did a full neurological exam. She couldn’t see anything abnormal on the exam, but she ordered a new batch of blood tests and MRIs of my brain and spine. She scheduled me for an EMG and a nerve conduction test the next week.
At first I didn’t fully comprehend what was at stake with this particular test, in which needles would be inserted into my muscles and the electrical activity of those muscles is measured. In ALS the motor neurons (which direct voluntary movement of muscles) degenerate and die. If you’ve got ALS, you’ll have abnormal results on an EMG.
This test, I gradually let myself realize, might tell me that I was about to begin a rapid descent into paralysis and death.
In addition to the obvious emotional stress, that EMG was one of the most physically painful procedures I’ve had to endure. The sensation of that thick needle penetrating muscles was excruciating. But once it was over, the neurologist looked at us calmly and said she didn’t see any sign of ALS. She said that the MRIs hadn’t shown any sign of MS. She said that I didn’t have Parkinson’s. She said that my blood tests came back negative for Celiac, Lyme, AIDS and a bunch of other things that might potentially cause my symptoms.
I’m not sure what to tell you, she said. But those are things that in my opinion you definitely don’t have.
It should have been a relief. I tried hard to make myself feel that. I don’t have ALS, I repeated to myself. I don’t have ALS. I tried to make it sound true. But because her answer was entirely in the realm of the negative – things I didn’t have – and because the same symptoms that I’d been experiencing were steadily growing worse, I found that I couldn’t convert this absence of diagnosis into feeling of comfort.
I discovered that as long as I was still experiencing the same symptoms, I didn’t feel any relief. There was no way that someone telling me I was fine was going to feel like a resolution. The only relief that I could imagine would have been a clear explanation of my symptoms, a definitive diagnosis.
But I remained undiagnosable.
The neurologist seemed confident and competent. But when you’re as unsettled as I was, you can figure out ways to doubt anyone.
Just how certain was she about the test results?
We asked her.
This is the way it looks to me, she said. But if you want to feel more confidence about this, you should definitely get a second opinion. I would completely understand if you chose to do that.
You could even go to the Mayo Clinic, she said, if that you would set your minds to rest.
[Part five of this series will range from the most traditional Western medical approaches to diagnosis and treatment, exemplified by the Mayo Clinic, with some of extremely non-Western approaches which I also embraced.]
