What should a doctor do when a patient insists (s)he has a disease, and there is no objective evidence of it?
There are a number of diseases which, especially in their early stages, are hard to diagnose except by the symptoms the patient reports. Many autoimmune diseases fall into this category, as does fibromyalgia and chronic fatigue syndrome. (In fact, there are still doctors who think the last two don't exist, but are simply hypochondria. The numbers of doubters are decreasing, however, especially with fibromyalgia, for which better tests are now available.)
I had my own run-in with a doctor over this very issue, as I seem to be in the first stages of rheumatoid arthritis. My mother had it, a great aunt had it, and I know what it looks like; and I show the same symptoms my mom did when she first began to suffer from the disease (and am the same age as she was). Nevertheless, when an antibody test turned up negative, the doctor was dismissive of my symptoms, and would not refer me to a rheumatologist -- despite the fact that 25% of rheumatoid arthritis sufferers test negative for the antibody within the first five years. The last time I went in for a checkup, she asked me how my joints were, and I said, "intermittently pretty painful" -- and she said, in a patronizing voice, "Yeah, getting older is tough, isn't it?"
I'm considering finding a new doctor.
No disease, however, has proven more difficult to establish than Morgellons syndrome. In this bizarre condition, patients report that they feel like their skin is infested with parasites. They have chronic itching and dermatitis, coupled with ulceration of the skin. Most oddly, they frequently report finding foreign material embedded in their skin -- usually fibers, often brightly colored, which on analysis have proven difficult to identify.
There is a Morgellons Research Foundation, dedicated to study of the disorder, and their take is clearly that it is an actual disease with actual physical manifestations (i.e. not psychosomatic). The Mayo Clinic has a webpage called "Managing Morgellons," although they hedge a little by saying that it "isn't widely recognized as a medical diagnosis."
And now, a study at the Mayo Clinic has resulted in a finding that may result in their strengthening their caveat -- or maybe revising the webpage totally. An intensive study of biopsy results from 108 patients who showed the symptoms of Morgellons syndrome over the past ten years has resulted in... nothing. Dr. Sara Hylwa and her team did a retrospective study of Morgellons claims, and her conclusion, published this month in the Journal of the American Medical Association, was that there was no evidence of parasite infestation. Fibers and other materials provided by patients were "of synthetic origin" -- i.e. clothing or carpet fibers. Hylwa refers to the disorder not by its more common name of Morgellons, but as "delusional parasitosis" -- making her stance on the whole thing abundantly clear. "The majority of skin biopsy results did show dermatitis," Hylwa states, "raising the possibility that skin inflammation and its attendant tactile discomfort might be the trigger provoking delusional symptoms in susceptible individuals."
It is certain that the mind can affect the state of a person's health, sometimes in complex and bizarre ways. That said, there are many illnesses that were once said to be "all in the patient's head" that now are considered valid diagnoses, with a known etiology. Couple this with the fact that doctors are paid to be certain -- no one is satisfied with a medical professional whose diagnosis is "beats the hell outta me." The result is that medicine is not quite the hard science that medical researchers claim it is.
As a scientist myself, far be it from me to cast doubt on Hylwa's study, which sounds as if it was thorough and painstaking. There's still a niggling doubt in the back of my mind, however -- that simple delusion is not sufficient to explain all of the claims of Morgellons patients. How, for example, does this account for the other, less talked-about symptoms of Morgellons -- joint pain, short-term memory loss, and severe fatigue? How does it account for the fact that the majority of cases in the United States have come from clusters in the states of California, Texas, and Florida? To me, there is still too much unexplained about this peculiar disease to write it off as a psychosomatic illness.
The fact is, there are still diseases out there whose status remains uncertain. This may be an uncomfortable position for doctors and medical researchers, but in science, you can't be afraid of the fact that you don't know everything. It is certain that there are diseases that are truly psychological, and not physical in origin; others thought to be psychosomatic have later turned out to have a clear biological basis. Coupling the certainty of Morgellons sufferers with the negative findings of Hylwa's study leaves one wondering in which category Morgellons should be placed.