Discussions By Condition: Medical Errors

NOT Lupus!!! Read this please before taking steroids!

Posted In: Medical Errors 0 Replies
  • Posted By: CWReding
  • December 31, 2013
  • 07:44 PM

Well... It wasn't Lupus, but is sure was (is) a mess. After a 14 month nightmare that began with a diagnosis of "Lupus" or "Drug-Induced Lupus", with a dozen doctors and as many trips to the ER, my daughter was finally diagnosed.

#1: Lyme Disease. This is really frustrating, because each and every time we were sent to another specialist, I asked if they would test for Lyme; and was told each time that "it isn't indicated" or "lyme isn't an issue in East Texas", etc. The really bad part? All of the steroids took her lyme disease from something that would likely have been a footnote in her medical history to a major MAJOR case of lyme disease that she'll have to deal with her entire life.

#2: MTHFR Gene C677T mutation (2 strands). If you've not heard of this, I'm not surprised. If you have lupus symptoms without having ALL of the lupus markers, I'd recommend taking some time to learn more.

So.. I guess I'm writing just in case there is anyone else out there whose blood work looked a lot like Lupus; but didn't quite fit. I made the mistake of trusting doctors who rushed to Lupus or Drug-Induced Lupus (and, in treating for Lupus, created a nightmare for my daughter) rather than trusting my own gut that something else was causing my daughters problems. Long story short... Don't trust any doctor who dismisses evidence that is contrary to, or doesn't quite fit in with his initial impressions. If the symptoms are there, and your doc won't order the test, get another doctor or order the tests on your own.

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