Leslie Levine's searing pains started the day after Thanksgiving in 2006. They began in her toes, which turned strangely dark. Then the agony crept upward. "It felt like my legs were being dipped in boiling oil 24/7," she said.
The emergency room and a series of doctors could do little but scratch their heads and offer her painkillers.
"I was living on oxycodone and very grateful for it," Levine said, then Harvard University's chief patent attorney. But it wasn't enough. "By January, I was on disability, because I was in such pain and could hardly walk."
Her internet search for answers led her to Dr. Anne Louise Oaklander, a neurologist at Massachusetts General Hospital, who was then developing a hypothesis about inexplicable pain disorders like Levine's: What if they were caused by an overactive immune system?
Oaklander treated Levine as if that were the case and the pain—thankfully—disappeared within five days. "I didn't know how I was going to live with that level of pain," Levine said, adding that it returns every time she stops treatment.
Now, Oaklander has published a series of 55 case reports including Levine's, suggesting that a number of people who suffer pain or other neurologic symptoms—which may have been diagnosed as fibromyalgia, chronic fatigue syndrome, mental illness, or a host of other problems.
Oaklander thinks that some percentage of people who have small fiber neuropathy—which can be caused by diabetes, chemotherapy, or other toxins—actually have a previously undiagnosed autoimmune problem.