The long road to diagnosis
Ive been on this journey for 8 years. Family HX of Lupus, Mom Maternal grandma, maternal aunts and cousins. Positive DSDNA for 7 years but ana was homogenous 1:40 so negative. Ive been to 4 Rhuemetologists who all tell me its lupus BUT because of negative ana, no official diagnosis. They tell me Im fine. So much time spent in pain, rashes, mouth ulcers, butterfly malar rash, locking joints in hands and feet, dizzy, digestive issues, joint pain, esoecially hips, etc. Internist has taken multiple bloodwork high CRP, and other markers for inflamation very high. Went to another Rhueme recently who actually did her entire history discussion with me from another room over the phone, because she is allergic to masks. She starts off with, "oh I see you have seen quite a few other rhuemetologists" in a distinct tone of disapproval. Then goes on to ask the basic by the book lupus questions. To which she says, "you do have alot of the symptoms and many postive DSDNA., but no positve ana". She then comes in with a full resperator on and listens to my heart, asks to see my face, tells me i do have the red rash and she is going to refer me to derm. And walks out the door.. not even 2 minutes spent with me no exam. Then proceeds to contradict in my notes what she said to me, she writes that I do NOT present with malar rash, and that many other doctors have told me this isnt lupus, etc etc So the test results come back and my ana is now Positive 1.160 and speckled. BUT my DSDNA for the first time in 7 years is negative?? She sent me a note in my chart acknowledging a positive ana, and says "see ya in 3 months" im so disappointed again.. why do they behave like no big deal, and tell me the opposite of what is written in my chart . I feel like Im treated poorly because i continue to search for answers. I am not sure if we are able to tell where we are from but I am in need of a great Rhueme... in MN.. its so hard to feel like this and not be taken seriously.
Thanks for listening
I joined this group today - specifically to respond to you. I was officially diagnosed 6 months ago and absolutely had lupus for almost 20 years. The onset symptoms and complications were classic. I won’t go into it all because you know what I mean. Eventually, though I new it was lupus I gave up bringing up all the clinical research about the 3 percent who don’t have a positive ANA. (Doesn’t someone have to be in the 3 percent ) None of it mattered, the best doctors blew it off more. Eventually I took the closest diagnosis I got to my actual clinical reality, which was systemic immunological poly arthritis. It was close I figured. I’m going to be 56 soon and was diagnosed with lupus 6 months ago based only on a positive ANA twice in a row.
I have close genetic ties, a sisters, great Aunts, cousins with lupus. I tell you this because for me, no matter how much I knew I had lupus, I felt invalidated, even on some forums (years ago I mean ) ! People would often say things like “there are other things that can mimic lupus symptoms “ as if i didn’t know that. But even with the diagnosis, it’s nearly impossible so far for me to get a group of physicians who can work together with understanding that almost all of these things that may seem to be on their own, are actually symptoms of lupus and inflammation.
Well I guess I had a lot to say. Reach out to me whenever
Christine
, I am so sorry that you have also experienced being dismissed time and time again by doctors, forcing you to be your own researcher/advocate/healthcare professional! It's completely unacceptable, but sadly so often the case for many lupus warriors. I hope there is some comfort in knowing that you are not alone. Thank you for sharing your story and support 💜
Gabby (team member)
Thank you. I really know what you are saying.. its so frustrating
Ugh! What a frustrating journey you have been on. I'm not a doctor, but it is my firm understanding that you do not have to have a positive ANA test to be diagnosed with lupus. It makes me kind of sad to think that rheumy's are being so rigid on this one test. is right in her post, 3 percent of people living with lupus are ANA negative. We have some information about that available here: https://lupus.net/blood-tests.
I encourage you to continue being as open and honest with your rheumy as you can. I know it can be hard to advocate for ourselves at times, especially when there is a differential in power between us and our medical providers. Hopefully, as your relationship continues to develop with your current rheumy, you and her will develop a better working relationship. I hear you loud and clear, though. It sounds like your visit with her was very invalidating. Fingers crossed the next one goes a bit better.
Thank you for sharing your experiences with us. I appreciate the time and energy you took to post.
Wishing you well, - Cody (Lupus. net Team Member)
