Newly diagnosed with questions
Hello all, I was recently diagnosed with lupus by my rheumatologist after years of Dr's and pain and searching with no answers. After seeing her since January and having multiple labs done combined with new and worsening symptoms she said were looking at a big picture of lupus and started me on a lupus med. She also order additional bloodwork that consisted of a extensive ENA panel... that panel came back negative. So I guess I'm just looking for answers while I wait for her office to get back with me... if the ENA was negative what does that mean? It tested the ones that were specific to lupus amongst other connective tissue diseases. All negative. Does it mean I'm out of a flare now? Or did she misdiagnose me? This autoimmune stuff is very confusing and I'm just trying to understand the significance of ena when it comes to diagnosing lupus. Don't get me wrong, I do not want lupus, it's a awful disease. But I also don't want to get thrown back into the pool I was drowning in of we have no idea what's wrong with you therefore there is no treatment therefore you will continue to suffer and be made to feel like a freaking anxiety basket case for trying to seek help. If someone more informed than I could help me understand what ENA is and what it means to be negative after you have been diagnosed I would really appreciate it, thank you.
Hi,
!
I am sorry you are dealing with all this uncertainty. And you hit the nail on the head when you said that all this autoimmune stuff is confusing; it sure is!
I wanted to include some information about ENA panels for you, although it may be too basic for what you are asking -- https://www.mayoclinic.org/tests-procedures/ena-panel-blood-test/. Okay. So, what does a negative test result mean? Well, I don't know for sure. And even if I did, I can't provide medical advice or diagnosis, for your safety. Blood tests can be so helpful, but they can also be misleading. Some of our members have very 'good' bloodwork, meaning everything looks fine, but they are experiencing autoimmune issues. And while it is rare, you can have a negative ENA and still have Lupus. So, labs don't always tell the full story. I am not sure if your doctor misdiagnosed you, nor can I say whether you are out of a flare or not. I would say that if you are experiencing new or worsening symptoms like you mentioned, then something is definitely going on in your body.
I would see if your rheumatologist can have a discussion with you about your concerns, as they deserve to be addressed. And I hear you about not wanting to go back to the place where you have no diagnosis and are just hurting with no options for treatment or relief. That stinks! So, please, don't be afraid to tell your doctor that you want to talk to her.
Best, Erin, Team Member.Erin Rush thank you so much for taking the time to respond. I know you all can't offer medical advice or anything just wondering if anyone had a similar experience... I'll give a little background as to why she believed lupus is what we're dealing with. Worsening symptoms ranging from malar rash, pain all over, gastrointestinal issues that have sent me to the er more than once, fatigue to where I get up for the day and am ready to go back to bed after about 3 hours of being awake, I never feel like I've slept enough, random days of intense itching all over, very mild emphysema diagnosed at age 27, and mild heart valve regurgitation. I wouldn't have brought up the emphysema or heart valve issues but everyone has always thought it was odd I had those issues so young and apparently there's a connection between lupus and affecting the lungs and heart so maybe that's why I have those issues already.
Bloodwork that had shown up was one positive ana, 2 negatives, then recently positive again, which once again I guess lupus likes to flip flop ana from what I can gather. Then low white blood cell count, low c3c, low c4c. So all that combined is why she said she thought lupus. So when I seen the negative ena with the flip flopping ana I was very confused. I messaged her about it and she did get back to me yesterday afternoon saying when she did the ena panel she was mainly looking for other connective tissue diseases so the negative ena didn't really change anything. Idk once again, so confusing with all the having to do bloodwork at the right time during flares and what not. Not to mention the 80+ autoimmune disorders there are and it taking years for someone to finally give me a diagnosis. I guess my biggest fear was her getting it wrong and me having to start all over again with no end to heal in sight. It's one thing when your sick and you have a game plan to fix it, it's another when nobody knows what to do with you and you just suffer wondering if whatever this is will take me out before I can do something about it. You can't help or fight something if you don't know what it is. Once again, don't get me wrong, I do not want lupus. But I've been sick so long I just want a fighting chance to feel halfway like a person again. Thanks for reading
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I hear your frustration and I'm sorry it's been so challenging for you.
I just wanted to add that lupus is notoriously difficult to diagnose.
Unfortunately, there is no one lab test that can be used to definitely diagnose lupus.
Doctors may run tests sometimes several times, to diagnose and monitor lupus or to rule out other conditions.
If you haven't seen it yet, I'm sharing this article that may provide some helpful information on testing/test results: https://lupus.net/blood-tests
Always know this community is here for help and support.
We'll be thinking of you and hope you are able to find some answers soon.
My best, Doreen (Team Member)
I’m so sorry you are dealing with not knowing exactly what’s going on. It can take a while to get a firm diagnosis due to how lupus presents differently in everyone.
I would like to point out that along with blood work, there are also criteria that is used as well as symptoms and family history. Here is a link for some criteria that is used
https://lupus.net/diagnostic-criteria
The lupus foundation of America has a great article with questions to ask that you can find below 👇
https://www.lupus.org/resources/diagnosing-lupus-guide
This may help to ask questions to your doctor to get a more definitive view of what’s going on.
I know it is frustrating and scary but be patient with yourself and the doctors. It’s not easy to diagnose, but if you both work together it will work out.
We are glad you are here there’s a wealth of information. Just be careful not over educate yourself so it doesn’t scare you. ~Racquel~ Team Member
