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Anyone here have negative ANA?

I’ve been having symptoms of lupus since I was pregnant with my son, who just turned 6 last week. I’ve brought up all my symptoms to my doctor on multiple occasions over the years but have not seen her in over 2 years because she doesn’t believe anything is wrong with me. She claims I’m depressed and just keeps pushing antidepressants. I have been to two naturopaths as well, to try and get to the root cause of my symptoms. I have been eating extremely healthy, taking extra vitamins and supplements, exercising, not drinking any alcohol or caffeine, and limiting my sugar intake. I should be the picture of health, but I am not. My hair has been falling out for almost 7 years and is so dry and damaged that my hairdresser is in shock that I lead such a healthy lifestyle. I can barely get out of bed in the morning because my knees are so stiff and achy. I’ve had Raynaud's since I was 13. My iron levels remain depleted despite my constant intake of red meat and supplements. My short-term memory is nonexistent and my fatigue is terrible. The sun is my enemy, I feel ill after 10 minutes of exposure. My doctor wouldn’t send me to a rheumatologist because 3 years ago I had an ANA test come back negative. This made me feel crazy and that maybe all these things were in my head. I am seeing my doctor again for the first time next week because for the last 3 months I’ve been suffering from lip sores (cheilitis) that won’t go away. Has anyone else had a negative ANA but later had a positive one?

  1. ,
    It sounds like you are juggling A LOT. I am so sorry to hear you have had to carry all of this without feeling listened to or supported by your doctor. Sadly, this is something that so many people in the community also experience. I hope your appointment next week goes better and you are able to finally get some validation and answers! Know you are not alone in this!
    Sending hugs,
    Gabby (team member)

    1. Oh my heavens. You have been through so much. I would first say it’s time to find a different dr. One who will actually listen and take your feelings and symptoms into account. They are out there sometimes it just takes awhile to find them. Make sure you are tracking your symptoms daily including your pain level, what if anything was done to treat it and if it helped. You can even include diet if you want. But I’ve learned from my years of working as an RN and from my many years of being a patient that drs seem to react better and pay more attention to something when it’s on paper. It can be done in a notebook or on your phone just jot them down every day. As far as the negative ana, yes you can actually have lupus with a negative ANA. Many of us, myself included, had negative ANAs for a long time before they suddenly turned positive. But look into sero-negative Lupus. It’s a thing. I hope that you can get some help soon. Don’t quit fighting. Keep fighting till you get answers!!! Big hugs!

      Amber (lupus.net team moderator)

      1. Thank you for your question about a negative ANA. I have sero-negative lupus. It took years of advocating for myself over and over again. Eventually I had a biopsy on a rash and that came back positive. 25 years later I still am seronegative. If you know in your heart that you have lupus then go to as many drs as you need to get to the diagnosis. I hope this helps!

        1. I've had 1 positive ANA title 1:160 and elevated dsDNA. But then negative. I thought I might have rare disease like Behcets but new rheumatologist said it sounds like Lupus. I've struggled with sooooo many symptoms and problems with no diagnosis for over a decade now. Thank you for telling me how to self advocate because I'm so tired of it all. They finally started treating me with Azathioprine and Prednisone so I'm grateful.

          1. , I'm so sorry you had to wait that long for some answers and relief! It is all too common in the lupus community for people to not take the concerns or pain seriously. I hope the new treatment plan works for you. Sending hugs!
            Gabby (team member)

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