Lupus Diagnosis, negative ANA

Allergies, blood and immune system
1

Hi guys!

I've been sick since 2011. It started with mono, and from there I just got a lot worse. Have Chronic Fatigue Syndrome/ ME, Fibromyalgia, chronic vitamin D deficiency, IBS, chronic nausea, PCOS, migraines and a LOT of joint pain- just to name a few.

This year, I've gotten a lot worse- and was finally referred to a rheumatologist. I really like him, and he's been incredibly helpful, but we're still struggling on a diagnosis. 

I believe I have lupus, although my ANA is negative. Two months before I got sick, I had the butterfly rash- which I've shown to my rheumatologist, and I still have a sort of scar on my face from where it was for so long. Because I wasn't sick yet in later fall of 2010, I didn't go to the doctor because I thought it was just dried skin.

My ANA is negative, but both of my tests being below .20. But my Anti-DNA test was 1.10, which some places call negative, but a lot of places use that as a positive. My rheumatologist looked at it, but also said it was negative. 

My inflammation (C-reactive) is on the higher end of normal now, at 9.8 (should be under 10), but was 20 earlier this year and 9 a few months ago. He's tossed around RA, but I don't believe I fit that, and I'm also a little spectacle of the fibromyalgia diagnosis as well.

My sedimentation rate is 37, and should be 20 and under, and my C3 compliment is 171, when it should be under 157.

For reference, my Vitamin D is 4, but I cannot take Vitamin D or i get really ill. 

My question: do any of you have lupus with a negative ANA, but positive for chronic inflammation in your body? I love my rheumatologist, but should I go get another opinion?

2

Yes you can test negative and have Lupus. It can be very elusive to diagnose. I don't have Lupus but Behcet's and I often have quite normal readings. LOts of people struggle with diagnosis because of this and go through exactly what you are going through. I would see someone else and take advice on where to go. If you are in the US I would be tempted to contact the Vasculitis Foundation there and ask for a good specialist close to you. If you're in the UK contact Vasculitis UK who have an amazing support group. 

3

The health issues you mentioned have one or 2 things in common; Mitochondrial Dysfunction & or high levels of Oxidative Stress. Did you know that they are connected? Oxidative Stress and low endogenous antioxidant immune enzymes may be the source of your problems. Antioxidant supplements we can take versus boosting our body's own natural antioxidant enzymes (NRF2 Activation) is like trying to fight a big fire with a little garden hose. Watch this to learn more

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4

I have a very similar issue. I have had multiple blood work ups, full panels. My ANA range is 160 and but the doctors will not diagnosis me with Lupus or anything close. I've been rushed to the emergency room 3 times for inflammatory issues with my eye. The eye doctors consistently tell me it's an autoimmune issue but the doctors disagree. I keep a low grade fever and feel like I have the flu constantly. I have complained of fibromyalgia like symptoms but they tell me that is unexplained and can't really be tested, I live with chronic symptoms no one seems to be able to explain and they tell me my results are all normal. Yet, I'm on medication for Seizures and they ask me if my blood pressure has always been low. That doesn't make sense. Oh, and I took a look at my blood work results, it showed Speckled. I didn't know what that meant until I looked up this last time my eye went out on me. Turns out it is a possible indicator of SLE Systemic Lupus Erythematosus which is harder to detect. Why didn't my doctors mention this to me. Why are they not talking to me about this or discussing the possibilities of this being an issue? I really don't understand. I have been searching and still searching for a doctor to just listen to me and help me with these issues. My constant fatigue, my hair loss (I had to shave my hair bald because it fell out in so many patches), my face is so scared, I thought is was just bad acne, my digestive issues, the list goes on. No one will help me because my results are normal but they really aren't. What is going on? What am I missing?

5

Hi. Change your specialist. If you live in the UK contact vasculitis uk for advice. If you are in the States contact the Vasculitis Foundation of America.