I am sure I have lupus...but I don't?

Posted by aceofstars @aceofstars, Jan 24 8:11pm

Hello all,

I have all of the symptoms of lupus, except for the butterfly rash. I had one ANA-positive (speckled) test and tested positive for anti-phospholipid antibodies at the same time. Both values were twice the "max normal" value. However, the ANA test I had done today came back negative (1:80). All of the lupus markers also came back normal.
I am so confused and so crushed. I'm only 21 years old and I can't do regular day-to-day activities because of pain, but I have no idea what's causing it. I've been searching for three years, but my doctors still don't have an answer for me. I was told to keep using ibuprofen, lidocaine, and methocarbamol for the pain, but even with those meds, I still need a cane to walk because of the pain in my joints. I need real answers and I have no idea what to do next.
Any advice or stories to share? I'm really struggling to find the motivation to keep searching, so I'd love to hear what worked for others.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

What sort of pain do you have? And do you also get hot/cold, pins and needles? Do you get other sensations like crawling or numbness? Is the pain constant, worse after cold or exertion, or random? I have several very weird pain things, so may be able to help a bit.

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By the way, at least two of pain types have no known cause. So just to be clear, I can’t diagnose, but do know how to cope with many types of pain

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@aceofstars Welcome to Mayo Clinic Connect. Feeling like you have been left out from a diagnosis can be very frustrating. When I was diagnosed with Systemic Lupus in 1988, it was a long process. Each test result led the doctor to what they would test next, and it took about 6 months of progressively going forward to get the final word, and rule out other conditions. Systemic Lupus is considered a "constellation disease". That is, what one patient experiences may not be what another patient shows, and there are many symptoms that mimic other conditions. For me, it is the photosensitivity, joint pain, and fatigue that affect me most of the time. Are you under the care of a rheumatologist to get precise answers? Also, a complete physical would be an important step.

If you have access to a large teaching hospital, or one associated with a university, you may be able to get a more comprehensive evaluation. Attached here is what Mayo Clinic has to say about lupus and diagnosing it:
https://www.mayoclinic.org/diseases-conditions/lupus/diagnosis-treatment/drc-20365790
Ginger

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I believe your ANA is still positive, only at a lower tier of 1:80 that rheumatologists normally consider it negative for autoimmune diseases (incl lupus, RA, etc).

My ANA was 1:80 (speckled) a year ago with many neuro symptoms (pins and needles, numbness, twitching, muscle spasm, gait issue, eye issue, etc…). I also started to have Raynaud’s at that time. The rheumatologist commented that I have prolonged immune reaction after 2 Covid-19 vaccines.

My ANA test lately has become negative which seems to correspond with my lessening of symptoms. Possibly my immune system eventually starts to calm down after nearly 2 years…, but who know?!

Do you feel any lessening of symptoms with a lower tier 1:80 ANA result? I think beside taking the medicine your doctor recommends, you may try some supplements eg. ginger and turmeric to help with joint inflammation, magnesium glycinate to relax the muscle….

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There are times when my SLE seems as if it is in “remission”, which is what autoimmune disorders do, I believe. And so often they are not showing up in tests may be because of “remission”, so I would definitely test ANA frequently….if they do that. Doctors seem very “mum” when it comes to so many things because either they don’t believe you (VERY WRONG!), or they are probably going by the book…not reality. And I’m not sure if when they do the ANA, they check for any others besides what they know of.

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@aceofstars, you've gotten some helpful replies here. You may also be interested in this related discussion:
– Lupus or not Lupus? https://connect.mayoclinic.org/discussion/lupus-not-lupus-lupus-not-lupus/

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Hello! I am a 34 year female. I was told I have lupus and antiphospholipid syndrome but then told by my PCP that I do not have lupus. Since I had a right shoulder arthroscopy in Nov 2022, I have developed a DVT, feel general pain, fatigue, rashes, and have had brain fog. I have done what feels like so many blood tests. I am much earlier in the process than you, so I can only imagine your frustration and discouragement. I just want to manage it and feel at least somewhat better! Keep pushing on, I hope you reach your goals!

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@aceofstars I hear you! My inflammatory markers are always normal but even after iron infusions, I am always SO tired. My body needs about 10 hours per night of sleep. My knees hurt, my front thighs hurt, my hips and back. My quad muscles have shrunk up. I have perniosis on my fingers. I run low grade fevers for no apparent reason. I have gone on with no answers since 2017. I don’t want to have a disease but want some relief. I can’t tell you how many physical therapists I have seen who can’t figure it out either. It’s very frustrating, to know this is not normal but not have any answers and a limited life. Walking is hard, standing is hard. I empathize with you…I hope we both find answers soon. Hugs and prayers for you.

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Chiari Malformation is often confused for lupus. It can come with 350 co morbidities, An MRI will show if you have a deviation. My son has it

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@lindzchic24

Hello! I am a 34 year female. I was told I have lupus and antiphospholipid syndrome but then told by my PCP that I do not have lupus. Since I had a right shoulder arthroscopy in Nov 2022, I have developed a DVT, feel general pain, fatigue, rashes, and have had brain fog. I have done what feels like so many blood tests. I am much earlier in the process than you, so I can only imagine your frustration and discouragement. I just want to manage it and feel at least somewhat better! Keep pushing on, I hope you reach your goals!

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I was diagnosed with SLE in 2010 but I was on the low end for positive so they said I was probably borderline, and that it's hard to get proper diagnosis. In my case I had been on meds for 3 months before I could see rheumatologist. The dr. felt I was starting to recover from the flare by the time he was able to test and examine me. I now am testing negative for SLE after being on Plaquenil since 2011. But I suffered 2 ischemic strokes this past year, with the first one May 9, 2022. It was in the cerebellum and my symptoms were mild, but they finally found it after the CT scan with contrast it was mild physical issues and I was home after one day in the stroke unit and back to driving and work in a week. Dr. just put me on Eliquis and set up an appointment with a neurologist, with a month wait to get in and be seen. So ironically they didn't do any Antiphospholipid blood work or even watch my INR. Then come June 2, 2022 I had a more severe clot that put me on the floor and I couldn't walk or raise my head. I felt like I was on an astronaut High-g training machine but my body was not moving. It was just what the stroke was doing inside my cerebellum. That stroke put my doctors back in force trying to determine a cause. I was tested for everything they could think of. Finally 6 months later the series of antiphospholipid tests on me were complete and I was positive for cardiolipin IgM and got the answer. I am kind of freaked a little that I am just 52 years old…and have had 2 strokes. But I am staying positive and being realistic that I have a changed life ahead of me and it includes depending on warfarin and not getting in risky situations where I an have uncontrolled bleeding. I am down to 2 days of OT and PT each week and feeling stronger every day. I am more fatigued than I've ever been in my life. I only drive in daylight and use a cane if I am going to be walking around anywhere outside my house. I am glad I found this site. Lately I've been told I should try to get checked out at MAYO Clinic, but I kind of think we've figured my diagnosis out and should just get me settled in this new situation with my body.

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