We spoonies have to trust our doctors. They have what we don’t – years of training, access to diagnostic clues and the latest treatment options. Trusted physicians are crucial to our care. I do trust my physicians and am so grateful for them, but I no longer trust elements of medical research, or the FDA.
When I was diagnosed with MS in 1996 I did everything my doctors told me. I got regular MRI’s and I took medications that ruined my quality of life, with no evidence of benefit. After the first few years, I finally learned balance, and began honoring my intuition as much as the doctors’ advice. I became a partner in my treatment and, along with my physicians, made wiser decisions about medications and lifestyle. But I never questioned the MRI. It's considered the gold standard in tracking the progress of neurological disease, and every professional I’d ever come across, over 21 years and in 4 States where we’ve lived, valued this view into my brain and spine. Heck – I valued it too.
At my last MRI, the technician paused halfway through, as always, to administer the contrast agent. I was given a consent form to sign, once again, before the vial of red liquid was injected into my vein. For the first time ever, I wondered about it. I asked the technician what it was.
“Gadolinium is a very rare earth element, a heavy metal that is only found in one place on earth and is very expensive,” she said.
[Heavy metal. That taste in my mouth – that’s what it was – metal.]
“I taste it, “ I said, “I guess I should drink a lot of water today to wash it through?”
“Yes, that’ll help, it’ll be fine,” she said.
That was two years ago. It isn’t fine.
I scheduled my next MRI recently, but then I remembered I’d meant to find out more about gadolinium. I did some cursory online research. Very quickly I learned that deposits of the heavy metal remain in our systems. The National Institutes of Health believed at first that patients with renal failure (kidney issues) were most at risk, but then they realized that all recipients of gadolinium are prone to lingering deposits in our brains. The FDA opened an inquiry into “gadolinium poisoning” in 2015, but they’re not in much of a hurry to finish. They are also not concerned with informing the Neurological practitioner community in the meantime. My neurologist was grateful for my research and said she had never heard of the issue. The NIH article stated that anyone who has received more than 6 lifetime doses is particularly vulnerable to gadolinium poisoning. I’ve had at least double that amount. The metal settles in the detate nucleus and the globus pallidus of the brain. Memory, cognition and gross motor skills are affected (which also happen to be classic MS symptoms). Further, the gadolinium sets us up for zinc toxicity. I have no idea if my symptoms are really caused by MS or if it’s just the heavy metals in my brain.
My neurologist was happy to re-write my MRI order, with no contrast. She explained the contrast only helped to show active lesions anyway. Symptomatically, it’s clear to me when my lesions are active, so there’s never really been a need for the contrast. My neurologist said she can still get a lot of information from an MRI with no contrast.
I’m angry that anyone ever thought putting heavy metals into sick people is a good idea. I’m angry the FDA doesn’t care enough to put their relationship with big pharma aside in order to prioritize our health. I’m angry they don’t bother to inform our caregivers that we’re being poisoned. I’m angry at myself for my blind trust in the system, and for failing to read every word on the forms I’ve been signing all these years. Please read the fine print, everyone.