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Amy's Story -1

A mysterious pain took her 11 years of life                                           Nothing worked even acupuncture                                                                        

Part One —The Monster

I met Amy in December 2000 in Springfield Clinic. I worked there as an acupuncturist and herbalist, partnered with a brilliant neurologist Dr. Claude Fortin at the Neuroscience Institute in the clinic. 

It was a freezing morning. Our office was crowded but quiet; a peaceful classical musical filled our waiting room. 

"Dr. Na, a new patient from Iowa in room 3." 

Pam, my assistant, walking-talking, whispered at me while putting a patient chart in my hand. As usual, our schedule was tight; Pam oversees our team performance.

"From Iowa? Over 300 miles away? It takes at least 3 to 4 hours one way of driving to come here. What for?”  I wondered, quickly flipping through pages of her chart before knocking on her door.  

Seven people were crowded shoulder to shoulder in the small treatment room; Amy, the patient, her parents, her husband, her brother, and a couple of her girlfriends. They all appeared tired and looked at me remaining very somber. From their eyes, however, I could sense the doubt in their mind, 

"Acupuncture? It sounds stupid. So many doctors had failed her. What can acupuncture do?"   Well, I cheerfully said 'Hi,' with a friendly smile. 

Amy was a beautiful, 31-year-old, who appeared in shape and relatively healthy. However, her hands and right foot seemed choppy, red, and severely swollen, feeling hot and tender. She couldn't put any weight on her foot and limped when walking. That was one of the reasons the whole family and friends came along. 

"Amy had visited countless doctors, shuttled between hospitals, multiple times to Mayo Clinic, and had done numerous exams, injections, pain killers for the past 11 years to no avail. So far, no one can diagnose her condition or give her any release; she is always left mystified." Mary, Amy's mother, stated. Mary worked as a  registered nurse at a local hospital in her hometown.

"On September 18, 1989," Mary continued, "Amy started experiencing pain around her right lower leg area. Two days later, she could barely walk." 

"Here we are, Dr. Na; we've heard great stories about you. Please help." Mary added.

Amy’s own words

“On September 18, 1989, My right leg and right foot felt like they were on fire, swollen and red-colored. The affected area became tender to touch, seven days later with a burning sensation." Amy recalled.

Amy had a bone scan which indicated she had muscular dystrophy.  She then had steroid injections and physical therapies but no improvement.     ***A bone scan is a nuclear imaging test. It helps diagnose and track several types of bone disease, including bone cancer. It is necessary if you have unexplained skeletal pain, bone infection, or a bone injury that can't show on a standard X-ray. There is no cure for muscular dystrophy, according to NIH: National Institute of Neurological Disorders and Stroke.

Dropping out of school was the only choice left for this ambitious young woman. She returned home for help. Soon she was admitted to Southern Illinois University School of Medicine SIU and treated with a constant intrathecal drip for five days.         ***Intrathecal administration is injecting drugs into the spinal canal. It reaches the cerebrospinal fluid (CSF) and is helpful in spinal anesthesia, chemotherapy, or pain management applications. The medication needs to go through the blood-brain barrier. The same drug given orally must enter the bloodstream and may not be able to pass out and into the brain, according to Wikipedia.

It worked. 

Amy felt better, walked well, and resumed school in January 1990. Nine months later, however, the same episode started over again. Back to SIU, the same procedures were applied by the same physician who had successfully treated her before, but this time, all efforts ended to no avail.

Despaired and exhausted, Amy started walking with crutches, enduring constant burning pain, and was nauseous by taking all the prescribed painkillers. She was losing weight and fell into a deep depression. 

"I seriously thought of taking all my prescribed painkillers and ending my life," Amy confessed with tears in her eyes.

By February 1991, Amy was admitted to the Mayo Clinic, looking for a miracle cure. Instead of painkillers, Mayo Clinic went down a strange road for her healing, which included behavior therapy, psychological consulting, and physical therapy. 

Surprisingly it worked!

"Amy did well upon returning from Mayo Clinic until Nov 1992. Her symptoms started over again." Mary recalled, "She received six steroid injections in two months at the Iowa Pain Clinic. She did well, walked again, and was reasonably healthy. She went back to school and was an excellent student. And then, again and again, from 1993 to 1996, she had multiple relapses." 

Mary slowly turned her head and looked at her dear daughter; love and affection filled her eyes. She gently held Amy's hand as if Amy was still her baby.  

She then continued, "On March 1997, Amy's right knee locked up, and her right foot was red and swollen, painful and hot. She had bier block four times at Burlington Medical Center but had no improvement.   ***Bier block is intravenous regional anesthesia. It is an anesthetic technique for surgical — procedures on the body's extremities where a local anesthetic is injected intravenously.
On July 1997, her right hand was swollen, red, and painful, and Amy had a series of high doses of steroids. One month later, in August, her hands and right foot were red, swollen, and tender to the touch. She was again limping on her right foot.

Amy was in constant pain from Sep 1997 to Feb 1998; walking was strenuous. She became addicted to pain medication, especially narcotics, which often cause serious side effects, such as nausea and vomiting, constipation, and risk rupture of the intestine. Other side effects she experienced included drowsiness, respiratory depression, circulatory compromise, and confusion. She stayed home in bed, couldn't work, didn't go out with her friends, and spiraled into a world of darkness and depression.

In June 1998, she returned to Mayo Clinic, but this was an unsuccessful trip.

On September 1998, she was admitted to Rush Rehab Center in Chicago, where she was helped with a withdrawal narcotic and sent back to counseling with extensive physical therapy. She got better again. Her hands and right foot were still swollen, and she started exercising again. 

By Nov 2000, her foot problems were spreading to her leg area. She had continued extreme pain." Mary sighed while ending her story.

"Have you got any confirmed diagnosis so far?" I asked Mary while checking on Amy.

"Not really," Mary replied.

What is it? I quickly scanned the database in my head, where I accumulated over 30 years of clinical experience in both Western and traditional Chinese medicine (TCM). The word Erythromelalgia EM appeared in my mind.

Erythromelalgia EM ?

EM is a rare, devastating disorder that typically affects the skin of the feet, hands, or both and causes visible redness, intense heat, and burning pain. First described in 1878 but so far remains poorly understood. It is estimated to affect about 1 in 100,000 Americans; many white women develop the condition in middle age, although some people are affected as children. Some scientists say a genetic mutation causes it, and there is no cure for this disorder.

(That is all for today. Part Two is on its way.)