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

Posted by aceofstars @aceofstars, Jan 24, 2023

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.

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Have you gone to a dermatologist a rheumatoid Dr kept saying no to me because of my test results coming back negative but a dermatologist was able to find things my regular doctor couldn't. Try calling them they are a big help! U don't need a referral for most of them. Just call.

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@suzupergrrrl

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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Wow! I am sorry to hear about your experience! I have been having issues with dizziness, nee headaches, and fatigue. My PCP is sending me for a brain MRI to see whether or not I have had a stroke, but is hoping it is not the case. She wonders if I have BPPV, which I have never had before this surgery thst started all of the other issues in Nov 2022. Thank you for sharing your experience amd expertise!

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