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@juanr1520

I've been diagnosed with Gadolinium retention (Lab tests done at Mayo Clinic urine/blood April & 24 hour urine May 2018) Only MRI with contrast performed March 05 2018.. 2 hours after having contrast dye injected into my body I felt this intense burning sensation throughout my body my eyes felt like burning also but they also have been extremely sensitive to light. I started having excruciating headaches, joints, muscles, deep bone pain.. Patches of hair were missing, and my scalp, face, arms and mouth were covered with blister like lesions (opens wound). It's been 7 months now and my symptoms keep getting worse, more frequent and more intense.. According to Mayo Clinic the levels of Gadolinium aren't high enough..
It's confusing and stressful when seeking medical attention I've seen at least 5 different physicians regarding my symptoms including a dermatologist who did a skin biopsy Mid September 2018 (lab test positive for prominent dermal fibrosis ) test done by LabCorp who doesn't test for Gadolinium or Nephrogenic Systemic Fibrosis. Dermatologist or physicians I've seen have no clue and have absolutely no clue what gadolinium or nephrogenic systemic fibrosis is. Regarding eventhough tests came back positive for gadolinium and nephrogenic systemic fibrosis they were unable to explain tests results. They have no clue in how to treat this conditions. I've been prescribed all types of medication/creams for allergies with absolutely no help.. One of the rarest side effects for gadolinium retention or nephrogenic systemic fibrosis is lesions or open wounds in the head, face, scalp and mouth and that was probably one of the first side effects I suffered from..
I need advise on how to deal with this unbearable condition.. If anyone out there have knowledge regarding this condition please guide me to the proper medical professionals. I've been at least 5 times to ER for the severity of the pain.. End of April 2018 I thought about taking my own life, that's how bad this medical condition has affected my medical and mental state.. PLEASE HELP..

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Replies to "I've been diagnosed with Gadolinium retention (Lab tests done at Mayo Clinic urine/blood April & 24..."

Hi @juanr1520,

According to this recent study, https://www.sciencedirect.com/science/article/pii/S1548559517300575, "Patients presenting with gadolinium deposition disease may show signs and symptoms that somewhat follows a pattern similar but not identical, and also less severe, to those observed in nephrogenic systemic fibrosis."

I'm tagging @ca426 as he has mentioned nephrogenic systemic fibrosis (NSF), and may be able to share some insights with you.
I'm not sure if you're being treated at Mayo Clinic, but here's some information about Mayo Clinic's care approach for NSF: https://www.mayoclinic.org/diseases-conditions/nephrogenic-systemic-fibrosis/care-at-mayo-clinic/mac-20352305