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What could my doctor be overlooking? ANA 1:1280
Hi!
Posting on here in hopes that others have had a similar situation to mine, and may have some pointers on additional testing to request from my docs.
There have been times I’ve had swelling in my wrists/fingers, I get tested during these symptoms and inflammation markers are normal. I had back pain (that turned out to be a bulging disc) that initially made my doctor request autoimmune labs.
Any pointers on other rare autoimmune diseases my doc could test for would be appreciated. I was on Plaquinel for three years because of my low positive DS DNA test. The medicine did nothing for me and I’ve been off of it for over a year. My labs have since been normal even after stopping the meds.
-ANA: 1:1280 (Homogeneous) April 2021 (I had an undiagnosed kidney infection at this time)
-DNA(DS), Crithidia Titer 1:40 (normal value < 1:10)
-Beta 2 Glycoprotein 1 Antibodies IGG, IGM IGA: high IGA 72 (normal < 20)
-Extractable Nuclear Antibodies: normal
-Cardiolipin Antibody: normal
-C-Reactive Protein: never elevated
-Sedimentation Rate: always normal
-C3 compliment: always normal
-C4 compliment: always normal
-Vitamin B12: always normal
-CBC/Metabolic Panel: always normal
-Protein in Urine: always normal
-Nucleated RBC Absolute: normal
-Rheumatoid Factor: normal
-Thyroid labs: always normal
-Smith Antibody: normal
-Uric Acid: normal
-Immunoglobulins IGG IGA IGM: normal
-Hepatic Functional Panel: normal
-Dilute Russell Viper Venom Time: normal
-Troponin I High Sensitivity: normal
-Borrelia Burgdorferi Antibodies (Lyme disease): normal
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@shelbirae47 Welcome to Mayo Clinic Connect! I’m sure everyone here will give you suggestions of tests you can have done. But it might be quicker to ask for a referral to a rheumatologist . Thy specialize in autoimmune and rare diseases. And even then, a diagnosis can take years. None of the local doctors knew what was wrong with me. They sort of patted me on the head and said not to worry. Typical response to a woman. My husband had the MRIs sent to the university hospital near us and they were able to diagnose me right away. I get all my neurological care from the university and the doctors in my town take care of the other routine stuff.
Sorry, I didn’t mean to lecture you! Based on what you learn about your voice and swallowing, let the doctors do their work. Lab values are always the be all and end all in diagnosing diseases.
Be sure to let this group know what you learn on Monday!
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2 ReactionsHi! I’ve been seeing a rheumatologist for four years. They misdiagnosed me with Lupus in May 2021 and prescribed me with Plaquinel. I’ve been off the meds for a year and my usual rheum labs are all normal. I’m at a loss!
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1 Reaction@shelbirae47
Your doctor(s) is overlooking asking you about your entire lifestyle.
Nutrition, Sleep, Exercise, Community, and what you do that brings you joy. However, they don’t get paid for that or taught that.
Best bet is to ask yourself all of those questions and answer honestly. It all starts from within.
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1 ReactionI’m curious why you say you were misdiagnosed with lupus. Your labs are consistent with that since anti-dsDNA is pretty specific to lupus. Do you see an RNP in your labs. That might raise the question of mixed connective tissue disease (MCTD) a combination of lupus and another AI disease given your finger swelling and wrist pain. You should also have a SPE (serum protein electrophoresis) since IGA is high to check for MGUS, sometimes seen in other AI diseases.
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1 ReactionGood morning! I say I was misdiagnosed because my rheumatologist said I was misdiagnosed and that the anti-dsDNA test is equivocal. She said that patients with lupus have very high levels of anti-dsDNA.
My RNP labs have been normal.
I will request that I’m tested for SPE. I mentioned the high IGA lab to my rheum and she said it was insignificant.
I appreciate your response!
Have you had gout before?
Not that I know of!
Some lupus patients have high anti ds DNA especially those with kidney involvement but some have normal or low levels. I would research this topic yourself to see if you agree. Have you considered a second opinion? A rheumatologist consult at your university hospital clinic might be very helpful.
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1 ReactionI recently requested a referral for a second opinion. Fingers are crossed that a new set of eyes on my situation can uncover something that may have been overlooked.
I know that there are many things you can be tested for and a Rheumatologist can usually figure it out. My ANA tests came back negative and it took three different Rheumatologists over a period of 9 years to even test for Psoriatic Arthritis. My current Rheumatologist figured it out because he tested for the HLA B27 gene. So, I hope that maybe they can finally figure out what is causing your issues and find a solution for you. Please keep us updated and we wish you the best.
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