1. < Autoimmune Diseases

How Long Until Diagnosis?

Posted by rachelpatrick22 @rachelpatrick22, Jan 22, 2019

How long did you go knowing something was wrong before you got a diagnosis of an autoimmune disease? Was it difficult or easy to have a doctor test you?

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helent | @helent | Aug 13, 2022
In reply to @becsbuddy "@rachelpatrick22 . Sounds like a lot of symptoms to deal with! Have you been to Mayo..." + (show)
@becsbuddy

@rachelpatrick22 . Sounds like a lot of symptoms to deal with! Have you been to Mayo Clinic or a university medical center? When I got sick almost 2 years ago, it took 10 months for them to diagnose . All of my symptoms were gastrointestinal so they removed my gallbladder. I would go to the ER because I wa so weak and dehydrated. It was awful. I finally begged for an MRI of my head, and there was my problem. I had a rare autoimmune disease called Clippers ( first named in 2010). Doctors here knew nothing about it or really what to do so we went to University of Colorado Health Sciences Center. Long road, but I’m slowly getting better. University medical centers, Mayo, etc.have more up to date knowledge. I sure wish you luck!

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What is clippers?

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Becky, Volunteer Mentor | @becsbuddy | Aug 13, 2022
In reply to @helent "What is clippers?" + (show)
@helent

What is clippers?

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@helent Clippers is an autoimmune disease that attacks the brain causing demyelination. On MRI, it can look similar to multiple sclerosis . Clippers stands for chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids. Like most ADs, there is no cure, only management.

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