Discussions By Condition: Medical Errors

Do I have lupus, really?

Posted In: Medical Errors 1 Replies
  • Posted By: doriefish
  • April 27, 2010
  • 09:39 AM

I was diagnosed with lupus over a year ago by my family doctor. It took me a year to get my insurance to pay for a rheumatologist. I was so happy to finally see him. when he came into to the exam room, he did some minor looking me over and after about 10 minutes he told me he didn't think i had lupus. He told me he thought that it was just my fibromyalgia that had worsened and that the deformity in my hands was minor rheumatoid arthritis! i was so upset, how can he say this by just looking at me? when i was diagnosed (by a blood test) i asked my doctor if he was sure it was lupus. he assured me he was. the rheumatologist did order a bunch of blood tests, but i was so upset that i just left. my plan is to go back to my primary care doctor and have the blood tests done there. then have him refer me to another specialist for a second opinion.
can anyone give me any advice?


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  • Dorie,From what I've been gathering is that Lupus mimics a lot of different things. I was just recently diagnosed by my family doctor as well and my first appt with a rheumatologist is in 2 weeks. I'm nervous and kinda interested in it at the same time. Anyways back to my point... Apparently because autoimmune diseases can be tricky and hard to diagnose, especially lupus, a lot of rheumatologist like to just blow us off. If I were you I would get blood work by 2 other doctors as well. A rheumtologist will have to have blood taken as well. I hope your insurance will cover your changes. Now here comes the worst part. Your blood tests can come back negative but you could still have lupus. Crazy, right? So, I'm sorry you were turned off by your first visit with a rheumatologist and I hope you find one that you can trust. Wish me luck as well.~April
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