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These patients are perhaps the only ones who must convince the world - especially employers and family members whose patience runs thin - that their symptoms are real, while suffering remedies offered by well-meaning health professionals and out-and-out quacks.
It's a frustrating business, but medical science is becoming more exact at diagnosing and treating people who suffer tormenting sensations that won't go away.
Dr. Jose Ochoa, medical director of the neuromuscular unit at Portland's Good Samaritan Hospital & Medical Center where a highly trained team specializes in treating and researching nerve dysfunctions, sympathizes.
"The patients pay the consequences and the health-care system pays the bill, usually a very high bill because it is repetitive - many doctors doing many tests, many treatments and sometimes surgery, sometimes unnecessary surgery," Ochoa said. "Now and then the patient gets hurt from treatment that doesn't pertain to the condition."
The neuromuscular unit is one of only seven such centers in the United States and the only one of its sort in the West to offer clinical treatment, educational training and basic research. The research, done in collaboration with the Neurological Sciences Institute at Good Samaritan, is designed to determine the location and causes of abnormal pains and other sensations.
Ochoa, a Chilean-born neurologist whose career includes clinical practice and research in South America, Europe, Scandinavia, the U.S. East Coast and Midwest, has a name for health providers who mistakenly think they can help people who suffer peripheral nerve disease.
"We call those people crypto-neurologist; the Pacific Northwest is absolutely full of them," Ochoa said.
"This includes some rheumatologists, orthopedic surgeons, general surgeons, acupuncturists, internists, and so on."
According to him, "neurologists know better and they deal with these patients successfully. If they find them too complicated, they send them to us."
Peripheral nerve problems are common, Ochoa said. Causes include physical injury such as trauma suffered in accidents; jobs in which nerves are repeatedly pinched; generalized illness (such as diabetes, kidney disease, vitamin deficiency, alcoholism, cancers in which nerve fibers decay.
A simplified textbook description of the nervous system is that it is divided into two parts - the central nervous system including the brain and spinal cord, and the peripheral nervous system including 12 pairs of cranial nerves and their branches and 31 pairs of spinal nerves and their branches. The peripheral nervous system provides input from sensory receptors to the central nervous system and output from it to receptors, muscles and glands.
Types of peripheral nerve disorders include these:
- Diabetic neuropathy, nerve degeneration caused by poor blood circulation in people who have diabetes.
- Guillain-Barre syndrome, a virus-caused, generalized muscle weakness or paralysis.
- Pinched nerves, a common occurrence in wrist, shoulder, back and other areas of the body - but often difficult to diagnose properly.
A good patient history is the essential first step in helping doctors trace events that may be at the root of a nerve disorder, Ochoa said. It requires a lot of time: "We have decided to see one or 1½ patients a day here. One new patient and a brief follow-up on a former patient. We don't have a production line. A patient comes in at 8 a.m., we take a history, talk, do clinical examinations and standard tests to evaluate the different nerve fibers that might come into play in the patient's disease."
Members of the neuromuscular unit team include Drs. Martha A. Cline, and Dr. Rose M. Dotson, both assistant professors of neurology at Oregon Health Sciences University; Jay Sonnad and Bell Triplett, clinical and research technicians; William Roberts, a neurophysiologist at Good Samaritan who specializes in pain mechanisms; and Dr. David Yarnitsky, a neurology fellow from Israel.
The neuropathy neurosensory clinic at Oregon Health Sciences University and the pain management clinic at Emanuel Hospital & Health Center collaborate with the Good Samaritan unit as does Dr. Stuart Rosenblum, an anesthesiologist at Emanuel who is the only person in Oregon approved to perform a specialized nerve block for patients referred from the neuromuscular unit.
A patient's medical history and clinical examination may indicate how symptoms have evolved over a period of time. Furthermore, a number of electrodiagnostic tests available at the neuromuscular unit include one to determine how well the nerves conduct signals; quantitative sensory testing to show the exact extent of a patient's sensitivity to pain, pressure, or temperature; thermography, an infrared mapping of exact temperature variations n a limb; microneurosurgery and microstimulation, the identifying and testing of individual nerve fibers within nerves to pinpoint the problem.
Ochoa, previously a professor of neurology at the University of Wisconsin and Dartmouth Medical School, was among the first in the world to prove that entrapment, or pinching, of the nerve is the cause of pain in peripheral nerve disease, not lack of blood supply. Resolution of the longstanding pinching vs. blood debate almost 20 years ago was important to the diagnosing and treating of pinched nerve problems.
Since the neuromuscular unit opened in 1986, Ochoa and his colleagues have treated patients and conducted research on why nerves can mistakenly fire in the absence of stimulation. The team has shown that the cause of many of these problems lie in the receptors, rather than nerves themselves.