San DiegoJason says he has been having complications from a gadolinium based-contrast agent he was injected with during an MRI (magnetic resonance imaging). "I had an allergic reaction immediately after the gadolinium injection," says Jason. "Nobody told me beforehand about the risk factors, or even what it was." Jason found out later that gadolinium exposure is linked to nephrogenic systemic fibrosis / nephrogenic fibrosing dermopathy (NSF/NFD).
(Gadolinium is a metallic chemical element which is classified in the rare earth metals. According to the FDA website it is a "paramagnetic metal ion". Gadolinium contrast agents generally provide better diagnostic information during an MRI than without contrast, but it is not necessary.)
About a year ago Jason was having pain in his hand; his doctor thought it could be carpal tunnel or tendonitis and suggested that Jason get an MRI. "Not knowing what to do, I had the MRI about six months ago," says Jason.
"They injected my vein in the joint of my arm with gadolinium just before I was to have the MRI," Jason explains. "I started shaking severely and my heart started to hurt. My chest felt tight and I had a strange warm sensation—it really scared me. The radiologist went through with the MRI even though I was shaking. I told him about my symptoms (there was no doctor present) and he just instructed me to go home and relax. Instinctively I drank lots of water when I got home, trying to flush this chemical out of my system.
But the symptoms didn't go away. I understand they are supposed to go away within 24 hours so I called my doctor the next day and told him about the side effects I was experiencing from this gadolinium contrast agent. My primary care doctor had never heard of this happening before. But I knew I had symptoms from this injection. I showed him these hot spots on my body—my stomach and my heart. He sent me to a gastrologist and she thought I had Wilson's disease, where copper accumulates in tissues, and that can cause a warm feeling in the stomach. I got a blood test for this disease and of course it was negative. I had about 20 more blood tests, even though I told them specifically what had caused these symptoms—the gadolinium contrast agent.
All the tests came back normal except that my liver enzymes were elevated. Before I had the MRI these levels were normal—I had blood tests that same day. How could they rise within a few days?
Now I find it painful to walk; I have these warm sensations in my legs. I don't know what to do because my doctors don't believe these side effects were caused by this contrast agent. I recently tried to get a biopsy because I discovered there is a test you can get to determine if you have NSF. The doctor said I can get the test but I need a referral from dermatology—they are the ones who scrape the skin for the biopsy. I have been trying to get an appointment for about a month now. I call the doctor and he is supposed to give the referral to dermatology but they don't respond. Or the doctor is not sending the referral—I am speculating here, but maybe he is afraid of a lawsuit because he ordered the MRI. So that is where I am now."
At this time Jason doesn't exhibit classic NSF symptoms, but no one can explain why he is having these sensations that occurred immediately after his MRI and why they have not gone away.
"I have really weird symptoms," Jason adds. "I feel pressure, like a 10 pound weight on my chest. And I have sharp pains in my heart area; warm tingling sensations in my legs and I have a very hot sensation around my entire mid-section. Before I had this MRI I was in perfect health; the only thing I had was this wrist issue, which is common with computer use. This is so bizarre. I read on the Internet that people usually develop NSF within 6 months, and I am right at the edge. I seem to have some NSF symptoms, but not the visible red rash."
According to researchers NSF is linked to gadolinium in patients with advanced kidney disease, but NSF is such a new, man-made disease that there isn't much known about it. "I don't think there is enough known about gadolinium and NSF for my doctor and other specialists to dismiss me," says Jason.
(Researchers reported in Nephrology Dialysis Transplantation (2009;24:856-863) that among patients with advanced kidney disease, NSF was 27 times more likely to develop in patients exposed to gadolinium than in those not exposed to these agents.)