Adairsville, GAJim Roberts was on dialysis when he was given a contrast agent with gadolinium before having an MRI. That was three years ago. Now Jim is in a wheelchair because his feet are straight from the ankles out--his joints are contracted--due to Nephrogenic Systemic Fibrosis (NSF) or Nephrogenic Fibrosing Dermopathy (NFD). Not even Jim's doctor knew of MRI health risks associated with dialysis patients when he had an MRI because there were no warning labels on the contrast agents until recently.
"Now Jim's heart is fibrosed,"explains his wife, Sandra. " His heart has stiffened on the right side and will not pump the blood to the left side. The cardiologist says there is nothing he can do for Jim. No surgeries or pacemakers will help."
"Jim, 62, was a very successful salesman but hasn't been able to work since he developed NSF," Jim's attorney, Debra DeCarli, says. "Jim should never have been given an MRI with gadolinium contrast because he was on dialysis for kidney failure at the time."
From 2006 to 2008, Jim complained of classic NSF symptoms to his doctors. " I told them my feet and knees were killing me and my fingers and toes were beginning to curl," says Jim. "Nothing really happened to my skin until about a year ago; now it is dark and leathery. I have a lot of pain in all my joints including my jaw. And I have a yellowing and crustiness with big blotches in my eyes.
"One night my wife Sandra and I went out for dinner and she suggested we walk across the street to a fish camp, a common place to eat in these parts. ' I can't walk,' I said. I had to use Sandra's cane (she recently had a knee replacement) to get back to the car." Jim says he complained to the dialysis clinic doctor about his symptoms but they fell on deaf ears.
"At first I thought Jim had problems with his feet," says Sandra. " I took Jim to several doctors and asked what it was but nobody knew. Then I got on every website and came across NSF. It could only be diagnosed by a rheumatologist or dermatologist.
Sandra demanded that Jim get tested for NSF--she had done a lot of research online when Jim couldn't walk and suspected NSF. "The first dermatologist we saw refused to take a biopsy and just gave us a prescription—I left there madder than a wet hornet," says Sandra. They found another dermatologist who gave Jim a skin biopsy and the tests came back positive for NSF.
That was March 8, 2009. Sandra says their life has gone downhill ever since. Jim was scheduled to get a kidney transplant but during surgery the doctor had to abort the surgery because of internal fibrosis.
"When we found out that Jim had NSF it answered an awful lot of questions," says Sandra. "During our last two hospital visits doctors barely acknowledged this disease; they may have seen it before but were unable to diagnose NSF because the drug companies have denied, denied. And many people are writing about these same symptoms online but can't get a diagnosis.
At first my reaction to Jim's NSF diagnosis was relief that this dermatologist stepped up to the plate. Then I was sad, like a resignation, because I know nothing can be done. And I am furious with the drug company."
"With NSF, you feel rotten and you won't feel better again," says Jim. "It may not progress for a while, but whatever you lose, you will never get it back."