So here's my story! I have NOT been diagnose yet but I started having symptoms of lupus about 2 weeks after the birth of my first baby and it's been almost a year and I still have them. It started with just mild joint pain in fingers elbows, wrist l, knees and I started having hair loss, had pritein in my urine once but when all these symptoms started but it was gone the next week, reccuring UTIs which i havent had one in a while but through my life ive had them alot, and blood in my urine on several occasions, muscle weakness, muscle twitches, and I do have the butterfly rash but can't remember if I've always had that or not.. So I went to my first Rheumy and before he even did any blood test he said no to lupus but he went ahead & did some blood test. I came back to him to get my results & he said everything was clear & that I didn't have lupus. So a few weeks later I decided to call && get my blood test results & my anti rnp/sm was 10 points to high but my rnp & sm alone were perfect. So I decided to get another Rheumy and I lived him. Very thorough in testing and said I def did have a lot of symptoms of blood work. He took 10 vials of blood and told me to come back in a week for results so I did just that. I went back & he said everything was PERFeCt! & that I did not have lupus. But here's the thing Im still having all these lupus synptoms & I've been checke for everything else. Could I still have lupus with all my blood work being negative? My Rheumy told me something would have showed up but I still think I have lupus.. Could anyone give me advise on what to do?
Hi and welcome to WHL.
one of the things about Lupus is that most people can look at the symptoms and see them in themselves at some point or another. Because there is no actual test for lupus they look at tests that tend to point in that direction. If they don't see those they will usually tell you to go search another path because Lupus mimics so many other diseases and many of those are hard to diagnose as well.
Since none of here are doctors we can't tell you if you have Lupus but what I will say is that you know your body and if you know something is wrong then you must be your best advocate. Make sure someone keeps looking for the right answer, even if it isn't Lupus. Having said that, sometimes it takes months or years to get a positive Lupus diagnosis so just keep good records and take them to all of your appointments
Have they tested your thryoid? How about B12 levels?
I know my thyroid has been checked but not sure about the B12. Thanks so much for the advise! :)