1. < Autoimmune Diseases

What could my doctor be overlooking? ANA 1:1280

Posted by shelbirae47 @shelbirae47, Feb 15 3:04pm

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

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

shelbirae47 | @shelbirae47 | Feb 17 9:11pm
In reply to @happilyalive "I know that there are many things you can be tested for and a Rheumatologist can..." + (show)
@happilyalive

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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I have a follow-up on Wednesday! I will report back. Thank you for your well wishes!

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slkanowitz | @slkanowitz | Feb 18 6:57am
In reply to @shelbirae47 "I recently requested a referral for a second opinion. Fingers are crossed that a new set..." + (show)
@shelbirae47

I 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.

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A lot of rheumatologist, expect patients signs and symptoms and labs to meet all the criteria or check all the boxes like in a textbook case. That leaves a lot of patients, undiagnosed and untreated because few of us are textbook cases. The doctors seem very reluctant to diagnose these auto immune diseases. That results in unnecessary and prolonged suffering for patients who just need relief and appropriate treatment. It took me 10 years to get diagnosed simply because my classic lupus symptoms preceded laboratory evidence of lupus. it’s not unusual for symptoms to precede lab evidence, but you have significant positive lab evidence. It should not be ignored just because your DSDNA is at an equivocal titer. That titer can change and if you tested that antibody 10 times you might get 10 different levels. someone has to use some common sense here. I do hope a second opinion yield some answers, a diagnosis, and a successful treatment plan for you. There are way too many people in the same boat experiencing your dilemma.

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1 reply
slkanowitz | @slkanowitz | Feb 18 7:11am

The Lupus foundation of America has an excellent website that describes the signs, symptoms, diagnostic process, laboratory tests, etc. related to Lupus. I would recommend anyone interested in this subject visit http://www.lupus.org for more information.

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shelbirae47 | @shelbirae47 | Feb 18 7:54am

Thank you very much! Even though I don’t want additional symptoms, I hope that in time, I meet more of the criteria to get an actual diagnosis.

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shelbirae47 | @shelbirae47 | Feb 18 7:57am
In reply to @slkanowitz "A lot of rheumatologist, expect patients signs and symptoms and labs to meet all the criteria..." + (show)
@slkanowitz

A lot of rheumatologist, expect patients signs and symptoms and labs to meet all the criteria or check all the boxes like in a textbook case. That leaves a lot of patients, undiagnosed and untreated because few of us are textbook cases. The doctors seem very reluctant to diagnose these auto immune diseases. That results in unnecessary and prolonged suffering for patients who just need relief and appropriate treatment. It took me 10 years to get diagnosed simply because my classic lupus symptoms preceded laboratory evidence of lupus. it’s not unusual for symptoms to precede lab evidence, but you have significant positive lab evidence. It should not be ignored just because your DSDNA is at an equivocal titer. That titer can change and if you tested that antibody 10 times you might get 10 different levels. someone has to use some common sense here. I do hope a second opinion yield some answers, a diagnosis, and a successful treatment plan for you. There are way too many people in the same boat experiencing your dilemma.

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My DSDNA has never fluctuated over the past four years and I will keep monitoring it if it does. In October, my rheumatologist verbally told me she didn’t think my equivocal tests were significant and that it’s probably nothing. The back and forth and uncertainty is driving me insane. I really hope the second opinion is more helpful.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Feb 19 5:25pm

@shelbirae47 Welcome to Mayo Clinic Connect! I can see that you’ve already received good information.
How did you find MCC?

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shelbirae47 | @shelbirae47 | Feb 20 1:31pm
In reply to @slkanowitz "I’m curious why you say you were misdiagnosed with lupus. Your labs are consistent with that..." + (show)
@slkanowitz

I’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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Hi! I had to follow up because I went to the rheum yesterday for a follow-up. She pulled more labs:

-Beta 2 Glycoprotein 1 Antibodies IGG, IGM and IGA: IgA was high, all others normal. This was the only "positive/elevated" result I had.
-Rheumatoid factor: normal
-Cyclic Citrullinated Peptide IGG: normal
-Cardiolipin Antibodies, IGG and IGM: normal
-DSDNA: normal!
-Extractable nuclear antibodies profile: normal
-C3 and C4 complement: normal
-Comprehensive metabolic panel: normal
-Dilute Russell Viper Venom time: normal
-CBC w/ auto differential: normal

I am stumped.

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wisfamily | @wisfamily | Feb 20 4:26pm

Autoimmune conditions can be wild to diagnose and are often diagnosis of exclusion. Meaning they figure out what you have by excluding or eliminating what you dont have first.

It can take years and numerous providers before many people get answers. Meanwhile patients often get gaslighted/ dismissed when tests come back normal or inconclusive.

Be persistent. Find a good Rheumatologist that you are comfortable with and trust. Work to rule out other causes for your symptoms.

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wisfamily | @wisfamily | Feb 20 4:28pm
In reply to @shelbirae47 "Hi! I’ve been seeing a rheumatologist for four years. They misdiagnosed me with Lupus in May..." + (show)
@shelbirae47

Hi! 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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Lupus can go into remission and labs and testing can be normal. Why do you think it was a misdiagnosis?

Normal test results or labs so not mean you dont have Lupus.

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1 reply
shelbirae47 | @shelbirae47 | Feb 20 5:16pm
In reply to @wisfamily "Lupus can go into remission and labs and testing can be normal. Why do you think..." + (show)
@wisfamily

Lupus can go into remission and labs and testing can be normal. Why do you think it was a misdiagnosis?

Normal test results or labs so not mean you dont have Lupus.

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I think it’s a misdiagnosis because two doctors I’ve seen at my doc office told me it was. They told me the nurse practitioner that diagnosed me was incorrect because I didn’t have clinical markers to be diagnosed with lupus in the first place. That she was too quick to diagnose me.

I hate it. I need to start over at a completely new office.

I’ve been off plaquinel for over a year and nothing has changed. Labs are the same, inflammation labs have never been elevated, I’m just lost at this point.

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