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rachelpatrick22 (@rachelpatrick22)

How Long Until Diagnosis?

Autoimmune Diseases | Last Active: Mar 17, 2019 | Replies (9)

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@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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Replies to "@rachelpatrick22 . Sounds like a lot of symptoms to deal with! Have you been to Mayo..."

@becsbuddy Thank you for sharing your story. Because I have some of the same symptoms as you did. Gastrointestinal issues etc. My gallbladder was removed some years back and things slowly got better but now wham. This thing has come back with avengence and I’m afraid the doctors may not be able to help me. I’m in the process getting more testing done. A CT of head is one of them. I’m praying that they find out what this is soon. I’m getting sicker as the days go by.

I live in Houston and we do not have a Mayo Clinic here. But I was looking at old tests from years ago and I had an ANA positive screen, then high lupus anticoagulant factor, and complement component C3C was low. But then my next Tests after that were normal for some reason. I haven’t been tested since, but I’m wondering if that is something I should do. I have a lot of random abnormalities in my labs that do not directly point to a single thing, so it’s really tough.