MRI Dyes Poisoning Patients, Turning Skin into "Marble" --by David Gutierrez, staff writer
In some patients with kidney problems, a common dye used in magnetic resonance imaging (MRI) tests may lead to an incurable and potentially fatal disease that causes skin to turn hard and immobile.
Nephrogenic systemic fibrosis (NSF) is a poorly understood medical condition in which collagen builds up in the skin and makes it hard and immobile, making it come to resemble marble.
NSF can also cause collagen to build up in the heart, lungs and liver, with potentially fatal consequences.
More than 95 percent of NSF cases are known to have occurred within three months of a patient being exposed to dyes made with a magnetic ion called gadolinium.
Gadolinium dyes are used in MRIs because they bind to specific tissues, increasing the contrast and usefulness of the images.
In May, the FDA asked for a black box warning on all gadolinium-based products, warning that a single exposure may be enough to cause NSF in kidney patients.
The FDA advised kidney patients undergoing MRIs to request that their physicians not use contrasting dyes in the exam unless it is absolutely necessary.
A black box warning is the strongest warning the FDA can issue without banning a product. However, the FDA has approved no other dyes for use in multi-purpose MRIs; only two other dyes are approved for certain liver problems.
According to Shawn E. Cowper, a dermatologic pathologist at Yale University who first identified NSF, as many as one in 20 kidney patients could be at risk if exposed to gadolinium.
"I don't think there's been a day in the last, probably, two years that's gone by that I haven't cried at least once about this," said Sarah Fracella, who developed NSF after receiving an MRI.
Due to the hardening of her skin, Fracella has trouble sitting or walking, and is unable to open bottles.
"It's been the hardest thing I've ever had to deal with."
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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I always refused to get the dye. Even when they found lesions on my brain they dismissed them as being nothing.
I didn't want to add anything into my system that could possibly make things worse.
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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I echo Gael's post, word for word.
I got no dye to be on the safe side.
"White matter" was dismissed. (I have no LLMD who could look at it, though.)
So, unless you have a LLMD reading your MRI, you may not find it as helpful as you hope.
Also - I will never have an MRI again due to the noise. My ears were damaged from this, even with ear plugs. But, I'm sensitive to begin with.
Be sure to wear ear plugs (the strongest type) and be sure they are sealed totally the entire time. If the seal breaks, tell them to wait until you are ready for the next step.
The MRI has large magnets that will clunk around inside the machine. You will still get a lot of sound from vibration through the bones so if you know that in advance, you can practice relaxation breathing and think of the best song to sing to yourself while in there.
I suggest taking your adrenal support before - and after. Holy Basil may be best (but if you drive yourself, be sure whatever you do does not relax you too much).
Your adrenal support will really help with the effect of stress on your body from the sound. Although, I have known of some people to sleep right on through.
More about adrenal support here:
This book, by an ILADS member LLMD, holds great information about treatments options and support measures: