, 12 tweets, 6 min read Read on Twitter
I have thought long and hard about #Gadolinium which I have suspected as the source of my pain, joint creaks,skin issues and bewilderment.Powerless Old Disabled Nurse with #MultipleSclerosis And about 9 MRI w Gad.
1st one saw my 5th Cervical Spine lesion. Lit up like an Xmas bulb
After 12 years of workups for #MultipleSclerosis
3 neurologists, numbness, optic neuritis, spasms, pain, fatigue, I finally had my answer. I could finally start treatment to prevent fading away like I saw so many patients do when I was a Neuro nurse at the Medical Center.
I had many lesions never explained, for many years. This is the first active one they found. traveloguefortheuniverse.blogspot.com/2009/11/ms-and… I started DMT’s. 3 exacerbations in 12 years. It took Gad to convince Doc to diagnose me.
Ok, so Without #Gadolinium I might not have been diagnosed with Cervical Spine lesion. I had had a head MRI with Gad and no glowing spots. The Neuro fellow questioned whether my neck had been looked at. Back into the magnet 🧲 Viola, a Diagnosis. Bingo. No Lumbar puncture 👍🏼
I was Relieved to be diagnosed.
I started CombiRx Study with enthusiasm. My Doctors were awesome. I’m not sure how many MRI w Gad I had because study tests are not in my e-chart. I think 7 in 7 years? Looking back, they reassured me #Gadolinium is safe.
After I researched Gadolinium deposition Disease, I suspected I have Gad deposits coming out very slowly. My Doctors are skeptical Of my theory. I have normal kidney function. My tattered fingernails blamed on OCD. I half agree.
Was the testing with Gad worth it?
It depends.
Without #Gadolinium Neurologists would have to diagnose without using a toxic rare earth metal mined in Mongolia 🇲🇳 Is that too hard to get past?
When I had 2 skin biopsies,I now believe I had Gad deposits,I thought they might have seen Gad.My brother said they weren’t looking for it. This was my second biopsy
My first biopsy.
I’m not saying I have Gadolinium Deposits in my skin, slowly coming out over many years.
I am saying that putting it all together makes me suspicious about Gad, and indiscriminate use of Gad, like the frequent scans I had on a study.
I’m saying it’s time to modify criteria for diagnosis & monitoring #MultipleSclerosis Try a blood test or less invasive testing.I hope @US_FDA takes another look at Safety of Gad.Even a survey could be significant. Gadolinium deposits are Like cancer, 15/10 pain I cannot explain.
@threadreaderapp #unroll please, Friends 🙏🏼😎
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