My husband, Cliff, was only 56 years old when he died from Neuroleptic Malignant Syndrome (NMS). An otherwise healthy man, Cliff had never suffered from a major illness, never undergone major surgery nor had he ever been hospitalized. Cliff’s story is a tragic one, but it is helpful for me to share it with others in order to create awareness of this rare condition.
On Wednesday May 26th, 2004 Cliff had been sick all day with nausea, and it continued throughout the night. At 6:30 am the next morning I took him to the emergency room because he was so exhausted and dehydrated, I believed it was something more than the flu. As is standard practice in Emergency Rooms, Cliff was given anti-nausea medication and placed in an IV. His condition failed to improved, and as many as four different anti-nausea medications were administered throughout the day. Despite numerous tests and x-rays, the doctors could not determine what was wrong or why he was getting worse. They admitted him into the hospital that afternoon. By the next day he was showing signs of agitation, frequent muscle spasms and he became delirious. Since his condition has worsened, the doctors decided to transfer him to Intensive Care. While transporting him to ICU, Cliff suffered respiratory failure, was placed on a respirator and sedated. During the course of the next three days Cliff suffered liver damage, kidney failure, erratic blood pressure, high fever, high white blood cell counts and constant muscle seizures. The doctors were still not able to make a diagnosis and treated each complications as it occurred. They were unaware that cumulatively these symptoms point to NMS.
By the fourth day, the kidney doctor suggested that his might be NMS. None of the doctors or other medical staff had knowledge of NMS or how to treat it and so they contacted the NMS Hotline number publicized on the website. They were in contact with the NMS group on a daily basis to obtain information and consult with others about treatment.
In addition to number other medications, they began to treat Cliff with dantrolene and on Sunday night May 30th. The next two weeks were an emotional and medical roller coaster. Cliff would show signs of improvement one day and then serious declines the next. He underwent surgery which removed 2/3 of his colon due to an aschemic bowel. He began to recover from the surgery and eventually there were a signs of kidney and liver improvement, and his blood pressure began to stabilize. We were all ‘cautiously optimistic” that the treatment prescribed for the NMS was working and that he would recover. Cliff was removed from most of his other medications, including the sedatives. Unfortunately he never re-gained consciousness and by June 15th he was no longer responsive. It was determined that the brain was severely damaged and no longer functioning. Cliff passed away on June 16th, exactly three weeks from the onset of his original illness.
Cliff had been in the college textbook industry for over 20 years…he loved to read and to teach others. By living long enough to show all of the signs of NMS and to demonstrate that the treatment prescribed actually could reverse the damage, Cliff was able to teach an entire medical staff about NMS. I am hopeful that what others learned from Cliff’s condition will help save lives in the future. In his memory we asked our friends and relatives to make donations to the NMS Information Service for the purposes of education and awareness.
Thank you for your assistance in spreading the information about NMS.