I don't understand why so many doctors say conflicting things or go back on what they said. It's so frustrating.

I'll give some background information for this story. Not long ago I found out that somewhere in my chart it said "suspected lupus". I went to a rheumatologist recently who told me "You've already been tested for that a few years ago and it was negative so you don't have it.". I asked about my uncle who has lupus and tested negative the first two times until he got a positive. She said "Probably a false negative the first two times, but that isn't typical in my experience. I don't think you have Lupus.". I asked if I could develop it later and she said "Probably not. That rarely happens with autoimmune disorders. If it's negative you don't have it, if it's positive you do have it. I don't see any point in retesting you. I suspect some of your EDS symptoms mimick lupus". I thought this was great. I felt like it was my EDS once again mimicking yet another chronic illness.

My mom was seeing her today for muscle fatigue. She saw that my mom had the testing for two different autoimmune panels that came back negative. She said to my mom "Since you're having worsening symptoms I'm going to reorder the test. You might have an autoimmune disorder showing up now that you didn't have before.". My mom said "I thought autoimmune disorder panels didn't usually change overtime." because she was with me at the appointment I went to. The rheumatologist said something like "No, that's not true.". I can't remember every word of our conversations with her, but this is almost exactly how it went.

It's not that I wanted to be retested for lupus. I just don't understand why she told me it's very definitive and told my mom something else. I was very happy and relieved when I thought it was with 100% certainty that I didn't have Lupus and would never have it, but now she tells my mom something completely different. Now I'm not sure if what she told me is accurate or not.

She also tried to tell me that my Raynaud's is very mild. Despite me telling her that my arms and legs turn purple and they get so cold sometimes that I can't do anything besides lay in my bed under multiple layers of blankets.

I'm so over doctor's. It's like the time my orthopedic doctor told me I had a really bad luxating patella on my right knee and told me nothing was wrong with it months later after doing an MRI. When I brought up what he said about the x-ray he acted like he had never even said that before.