Valerie Culp

Valerie Culp with her family

Valerie Culp knew something wasn't right. At 27, Valerie was an accomplished professional in charge of financial operations for a hotel corporation. She began to notice she was transposing numbers in her monthly reports. She forgot the combination for a safe she used every day. She ran into a doorjamb in her office. Then one morning, she bent over to take her 5-month-old son out of his crib, and saw not one baby, but two. Her eyes wouldn't focus. The incident led to a trip to the emergency room in her hometown of Des Moines, Iowa.

That hospital visit was the beginning of a medical ordeal that would eventually put Valerie into a coma and have some physicians recommending she be placed in a nursing home. Instead, Valerie was taken to Mayo Clinic, where she benefited from an experimental treatment that allowed her to regain her ability to walk and talk, and gave her a second chance that some thought she would never have.

A frightening turn of events

After her son was born in July 1990, Valerie blamed the fatigue that comes with caring for a newborn, coupled with a stressful job, for the forgetfulness, headaches and weariness she was experiencing. But, after spending two weeks in the hospital following her bout of double vision and dizziness, she realized it was much more.

Through an MRI, doctors discovered that part of the myelin sheath surrounding the nerve tissue in the pons area of Valerie's brain was gone. The pons portion of the brain is the middle of the brain stem. Without the myelin, Valerie's body was having difficulty receiving the signals her brain was sending, resulting in loss of muscle coordination, strength, vision, balance and cognition.

Initially, Valerie was diagnosed as having a stroke. She was released from the hospital with the expectation she would improve with time. That didn't happen. "Two weeks later, in early January 1991, I came down with flu symptoms. I felt terrible," says Valerie. "I was very weak; I couldn't even lift my baby."

Valerie's husband, Brent, took her back to the hospital, where she was readmitted. Her condition deteriorated, and she was placed in intensive care.

"They couldn't figure out what was going on. Because they had diagnosed me with a stroke, they thought I should be getting better," says Valerie. "When they did another MRI, it showed more of the myelin in my brain was gone."

At the end of a week in intensive care, all of the myelin had disintegrated from the pons region of her brain. Quadriplegic and unable to talk or to move her eyes, Valerie lapsed into a coma.

"At that point, I wasn't expected to live," says Valerie. "The hospital release papers said they were sending me to a nursing home because there was nothing more they could do."

Instead of taking her to a nursing home, Brent and Valerie's primary care physician decided to get a second opinion. They arranged for Valerie to be flown to Mayo Clinic in Rochester, Minn., where she was admitted to the Neurology Intensive Care Unit (ICU).

"I had some awareness of what was going on while I was in the coma. It was like being locked in glass. I couldn't respond to anything," says Valerie. "But, I could tell when people were talking. I could feel when they gave me a bath. I could even hear someone hiccupping in the room. I didn't understand what was going on, but I knew things were happening around me."

A new possibility

Then, Moses Rodriguez, M.D., entered the picture, and things began to change. Valerie had already been given the standard treatment for someone in her condition: a high dose of steroids. There was no improvement. A Mayo Clinic neurologist, Dr. Rodriguez had been researching a new treatment, called plasma exchange, that had shown promise in patients who had experienced severe loss of myelin and who were unresponsive to steroids.

In reviewing Valerie's case, Dr. Rodriguez suspected her condition was the result of multiple sclerosis (MS). He recommended plasma exchange therapy, and Valerie's family agreed.

"Valerie Culp was one of the first patients to receive plasma exchange for MS," says Dr. Rodriguez. "The results were dramatic."

The plasma exchange involved removing some of Valerie's blood and mechanically separating the blood cells from the fluid (plasma). The blood cells were then mixed with a replacement solution, and the solution with the blood cells was returned to her body. After three treatments, Valerie began to move again and started to regain her ability to speak.

Valerie continued to improve, and she was moved out of the Neurology ICU after one week. She began rehabilitation to help her get her motor function and language skills back.

"In rehab, they weren't sure what to do with me. Someone with as much damage as I had usually doesn't recover as much as I did," says Valerie. "At the beginning, they warned me I may never walk again, may never be able to talk clearly or use my arms. But, within four weeks, after nine plasma exchange treatments, I was racing one of my doctors down a back hallway in the hospital."

Valerie's recovery went so well, she was able to leave the hospital in early March. When she returned to Mayo Clinic for a checkup three months later, an MRI revealed all of the myelin in her brain had regenerated. Subsequent followups showed that the illness that had almost taken Valerie's life was, as Dr. Rodriguez suspected, multiple sclerosis.

A different way of looking at MS

Dr. Rodriguez found that Valerie's experience was not unique. Around the same time she was receiving her treatment, four other individuals who had severe MS-related disability also were successfully treated with plasma exchange at Mayo Clinic.

"All of the patients were quadriplegic. Some were on respirators," says Dr. Rodriguez. "These were young people, 20- to 40-year-olds, with little hope of recovery. Within one week of receiving plasma exchange, they were almost back to normal. They went from being unable to move to being able to run."

In 1993, Dr. Rodriguez published the results of the plasma exchange treatment in these individuals in the medical journal Neurology. The response to that article prompted him to develop a clinical research trial of plasma exchange that was funded by the National Institutes of Health (NIH). Results of the four-year study found that 40 percent of individuals who suffered a severe, debilitating MS attack, and who did not respond to high-dose steroids, improved after being treated with plasma exchange when they received it within three months of the initial onset of their symptoms.

"Before plasma exchange, it was believed that you couldn't repair the nervous system. We thought once it was damaged, the damage was permanent," says Dr. Rodriguez. "But, that's not true. Plasma exchange can make a difference in a certain subset of patients when the damage is caught early."

A chance to help others

More than a decade after first going to the hospital with mysterious symptoms, Valerie Culp still struggles with MS. She has been unable to return to work, and she must cope with fatigue each day. But, she's thankful she's had the opportunity to watch her son, now 14, grow. She also has put her experience to work helping others. Valerie leads a self-help group for individuals who have MS, and she is a member of the board of trustees for the Iowa Chapter of the National Multiple Sclerosis Society.

She reflects on her experience with Dr. Rodriguez and Mayo Clinic with gratitude. "If I wouldn't have been taken to Mayo Clinic, I would have died," she says. "The people around me didn't give up. They tried every resource they could think of, and Mayo Clinic saved my life."

Valerie continues, "I'm glad to be here to help others. It's hard when you're young to have a disease take so much away from you. I try to show people how far I've come, and that they've got to keep trying, keep pushing. It's worth it."