Detroit, MILeon L. lives in a state of uncertainty: he has had six MRIs and each time, was injected with a gadolinium-based contrast agent. Nobody can give him a definite answer whether or not the side effects he has developed will lead to NSF—nephrogenic systemic fibrosis. But one thing he does know—he will never have another injection of contrast agent.
In June 2006, the Food and Drug Administration first notified healthcare professionals and the public about the risk of NSF following exposure to gadolinium. Leon had his first MRI with the contrast agent in 2003. He was diagnosed with a spinal tumor, had surgery and had annual MRI follow-ups.
1st and 2nd MRI
I was told the contrast agent was gadolinium based and didn't think twice about it; I didn't have any allergies or reactions. I had the MRI and they pulled me out for about a minute, injected me through a vein in my arm with the contrast agent and repeated the MRI.
3rd MRI
Same as before but right after the injection, while I was in the hospital, my legs felt numb and started to burn. Again, I didn't pay much attention and just thought it was related to the surgery.
4th MRI
I had it in 2005 and felt really awful this time. I had a bad stomach ache and diarrhea. And my body felt really hot; it was very strange because I had never felt this way before. I informed the technician and administration at the hospital that something was wrong. 'Was too much used?' I asked. 'Nothing we did was done wrong with you,' they replied.
At that time, I didn't think much about gadolinium but I suspected it had to be something related to the MRI—because of the timing. Right away after the injection I also got a shortness of breath. Then a few hours later, I was running to the bathroom.
5th MRI
In 2007 I had no immediate problems but my legs were falling asleep, especially at night. I noticed the veins were puffed up, like I was getting varicose veins. I have low blood pressure and my veins are hard to find when blood is taken or I need an IV drip. It has always been a problem to find veins in my hands and arms. Very weird but again, I didn't put two and two together until the 6th MRI.
6th MRI
One month ago, I had a bad backache again. This time I went to another hospital—St. Joseph's--because my primary physician is affiliated with it and I had to go there for insurance reasons, I had no choice. I asked the technician if there were any side effects from the contrast agent. 'If you don't want it, we won't do an MRI today,' he said. I couldn't afford not to have it so I acquiesced.
The whole procedure this time was different. This time I had an IV in my hand and it was left in my hand during the first MRI, then they pulled me out a bit and gave me the contrast agent. I felt it because my hand got cold. Then they 'washed' my veins with saline.
I went home, everything was fine. The next morning my hand hurt—it was swollen at the wrist and at the IV location. It was red and hot and painful to touch. I called the hospital and they said there couldn't be anything wrong, they followed procedure and I should come to ER if I thought something was wrong. I called my doctor and made an appointment with her three days later. She didn't know much about it but said it would just go away.
It got worse so I phoned her a few days later. I asked her why my hand is swollen and veins puffing out, like they were plugged. It felt like I was developing blood clots; my veins felt hard and bumpy. It spread from my wrist to my elbow. Why? Again, she said wait two weeks.
I called the hospital again. The MRI technician told me that I had a higher dose of contrast agent with gadolinium than usual but they do this often and it shouldn't be a problem. And she added that if I did have a reaction, it would happen immediately and my kidneys would fail. And it happens only to those who have weak kidneys. I told her my kidneys aren't functioning at 100 percent.
Could I develop NSF? My doctor said they don't know and again, she just said it would go away. On what basis was she forming this opinion? If she is so confident it would go away, why does my arm hurt? I told her it was too coincidental with the timing of the gadolinium injection.
I contacted a radiologist at St. Joseph's and got his opinion. I showed him my arm and veins. 'Doctors don't know much about this disease,' he said, 'and chances are, this is not NSF but you have problems with your veins and it is likely because of the gadolinium.' The radiologist also told me that NSF could develop a year from now. His concluding remarks: be patient and hopefully NSF won't develop.
Ten days ago
My co-workers and friends ask me what is wrong with my veins. Swelling has gone away but my veins are puffing out in new locations. And I feel bad at night. When I urinate my kidneys hurt. I am terrified that the problem is moving from my wrist to other parts of my body. The vein injury might spread to internal organs—could anyone assure me this won't happen? Nobody can give me an answer. Now I am worried about organ failure.
Will these symptoms go away or will they kill me? There is no way for me to know—nobody understands enough about contrast agents. But I do know that my veins are having trouble in different locations of my body so it must have an effect on internal organs. Doctors don't know, they don't have any answers and they don't want to talk about it.
I will never allow anyone to inject me with a contrast agent again.
How can anyone give you this contrast agent without warning you of the side effects, and that you could possibly get sick and die in agony, all this just to get a better picture? Doctors use a heavy-handed technique regarding this gadolinium injection that is not well understood or well-researched on humans. They use it without enough reason to justify the risk over the benefit. If someone tells me I need it or I will die, I understand. But not informing me of its danger is criminal."
Currently, multiple lawsuits have been filed against the makers of gadolinium-based contrast agents and the law firm Levin Papantonio has taken an active lead in the Gadolinium litigation. The firm has filed multiple cases and it is aggressively pushing forward with these cases. As well, attorney Troy Rafferty of Levin Papantonio will hold one of four positions on the Executive Committee of the Plaintiff's Steering Committee, and will serve as Co-Lead of the Plaintiff's Steering Committee.