Laura Elliott Profile picture
Mar 25, 2018 11 tweets 3 min read Twitter logo Read on Twitter
Called 111 because the vertigo and headache is really not lessening since that MRI, and got an appointment for an out of hours GP at 8pm. Also just discovered that patients with MCAS have been found to react badly to gadolinium (the contrast used in MRIs). I have MCAS.
Surely someone should maybe have warned me about this before? Like "Hey, this pre-existing condition means you struggle to excrete this very damaging toxic metal in the same way most other patients can".
I'd have pushed for an MRI without the contrast if someone had warned me. I'm now kind of furious.… "The obtained results demonstrate that both ionic and non-ionic preparations of the MRI contrast media are able to induce mast cell degranulation in vitro." Great.
"Degranulation of mast cells induced by various exogenous factors may cause multiple symptoms and complications related to the mechanisms of immediate and delayed hypersensitivity."… "We are presently oblivious to the probable dangers of retained gadolinium in the brain, and must execute gadolinium administration with wariness."… “Typical clinical features of “gadolinium deposition disease” include persistent headache, bone and joint pain, and clouded mentation often described as “brain fog”. ... Should I be worried most of my symptoms got worse after my neck MRI 2 years ago?
"Following a year-long review of gadolinium contrast agents, the EMA’s Pharmacovigilance and Risk Assessment Committee (PRAC) “found convincing evidence of accumulation of gadolinium in the brain"
"Reports of long-term gadolinium accumulation in patients with normal kidney function, following gadolinium enhanced MRI scans, first appeared in 2009. It was shown that gadolinium could be found in the bones of patients who underwent gadolinium MRI scans even 8 years later"
Just to be clear I'm not saying I have this illness. i just think it's interesting (in an awful way) that we use this contrast agent indiscriminately, when in recent years we're learning that it can actually cause long-term harm in some patients.
Particularly for patients with histamine sensitivities and mast cell disorders like #MCAS, it should be a public health announcement that we should be really wary when deciding between MRIs with and without contrast.

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More from @TinyWriterLaura

May 18, 2018
I kind of really hate when people romanticise pain like this, as though it’s a transient learning tool that’s there to help us grow.
Newsflash: you can learn without pain. Emotional growth doesn’t depend on being damaged, and if you think it does then you’ve probably had some really terrible relationships and I’m sorry for that.
And I get why humans want to make ‘pain’ - a terrible thing - into something worthwhile they’ve overcome to become a better person, but you know what? I just think it devalues everyone to do so.

It suggests that the people who’ve suffered the most pain are the wisest/kindest
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