Undiagnosed Illness

This is another post in a series on medical psychology.

Nothing is more frustrating than knowing you are sick and not knowing what is wrong.  It frustrates both patients and doctors alike.  After about six visits doctors may start to either doubt their ability to provide assistance or will become uncomfortable with the ambiguity of the situation.  Some physicians will handle the lack of a diagnosis by referring to another physician, and some will start to limit contact with the patient.  The visit will become shorter and the physician may become more irritable.  In some cases they will refuse services outright.  At the same time patients will become more demanding of answers and treatments, irritated with the physician, upset with the ambiguity and getting increasingly demanding.  In some cases patients will explore alternative treatments, look up symptoms online, and try various folk remedies for symptom relief or ask neighbors, friends, and people in chat rooms to provide assistance.  Both for the peace of mind of the physician and for the peace of mind of the patient a health psychologist can provide assistance.

For the physician, the health psychologist has tools to manage the patient's ambiguity.  They can clarify the symptoms being reported and can put the symptoms being reported into medical terminology.  Health psychologists can provide assistance for diagnostic clarification.  They can help the physician recognize that, apart from what was drilled into them in medical school, they are not expected to know everything about every patient.  Some illnesses present in unusual ways.  Some patients are not able to report symptoms adequately.  Some illnesses have not been discovered.  Some things just take time to figure out. 

For the patient, the health psychologist has tools to help the patient organize the symptoms into medical decision trees, to understand symptoms, to manage anxiety, to manage depression and pain, and to be able to help with making decisions about health information, research, clinical trials, alternative treatments, and folk remedies and herbal care.  The health psychologist can help to differentiate symptoms that are medical in nature from those that are psychological in nature. 

I met a woman who was a frequent user of herbal medicines to help with her symptoms.  Her local clerk at the health food and herb store was her functioning pharmacist.  She had lots of symptoms she was treating with herbs and supplements.  She had the idea that because herbs and supplements are classified as "natural" they are somehow safer than pharmaceutic products.  So I got a book out for her--the Physicians Desk Reference for Herbal Medicines.  I started by showing her how to look up the medicines she was taking.  She was taking herbal medicines for diarrhea, constipation, inflammation, and colic.  These interact and conflict with one another.  Without knowing the effects or methods of actions of these "natural" products, she was making herself much sicker.  We also talk about the skills and education of the clerk at the health food store versus the skills and experience of a pharmacist trained in herbal medicine.  We talked about the protections to consumers about licensed professionals.  We talked about the difference between herbal products and companies and the difference between herbs and pharmaceutical medicines.  Different companies use different parts of herbs with different potencies.  The herb and supplement industry is regulated differently than the pharmaceutical industry.  Some pharmaceutical medications are derived from plant medicines but they are manufactured for stability, consistency and quality.  Some people choose to grow their own herbs for medicinal use so they can control the plants, soil, and growing conditions.  As we talked about all that she began understanding that the mixture of herbal products was causing some of her symptoms and she had an inadequate understanding of what she was doing when she decided to take herbs.  She decided to gradually discontinue all the supplements and see how her body was functioning.  Over a period of a couple of months her health improved significantly and she stopped being symptomatic.  Since her treating doctor had never known she was using herbs he had never suspected that her use of herbal medicines was causing her symptoms.  Her undiagnosed condition turned out to be all due to side effects of herbal medications.

A patient came to see me because of hallucinations of spiders.  He saw spiders all the time, especially against white backgrounds.  He had been tried by his doctor on an anti-psychotic medication but the visions of spiders continued.  Visual hallucinations are atypical for psychiatric problems and are far more likely with medical problems.  So we talked about his history in depth.  The spider visions followed his eye movements and were far more consistent with visual field floaters than hallucinatory events.  Ocular floaters often are a consequence of head trauma.  He had a history of a head injury with a minor loss of consciousness.  The review of symptoms of head injury confirmed a diagnosis of post-concussive syndrome.  The patient completed a couple of formal questionnaires and the results were forwarded to his treating physician.  We were able to help him connect with a neurologist for follow-up and to online support groups to help him and his family deal with his residual symptoms.

For some people with unusual diagnoses the conditions are both rare and serious.  I met a woman who suddenly stopped being able to function.  She couldn't sit down in a chair because she couldn't decide which chair to sit in.  She couldn't eat because she couldn't decide what food to eat first.  Her medical doctor thought she had become suddenly mentally ill.  She wasn't responding to psychiatric medication.  She was referred to me for an evaluation.  Her symptoms were consistent with an unusual neurological disorder sometimes associated with a toxic condition otherwise associated with a loss of functioning in the front and side parts of the brain.  She was sent for neurological testing which confirmed the diagnosis of loss of brain volume in the frontal and temporal lobes (frontal-temporal dementia).  As a health psychologist I could help her family make decisions about her care, help with information about hospice care, conservatorships and end of life decision making. 

Health and medical psychologists can provide a wide variety of services to both physicians and patients dealing with undiagnosed illness or unusual symptoms or illnesses not responding as expected to conventional treatments.  They can provide information and resource directly to physicians, patients and family members about research, symptom identification, and options.  They can help manage or eliminate the ambiguity and stress inherent in not having a diagnosis.