I have posted on here multiple times so I will keep this short. Since 2020, I have now had 4 positive ANA test results, all homogenous. They were 1:640, 1:1280, greater than 1:1280, and 1:640. I have been on Naltrexone now for over a year I believe. Symptoms have a habit of coming and going, being mild at times, more severe at others. Flare-ups can last anywhere from hours to weeks. Triggers include certain food, weather changes, stress, menstrual cycle, over exertion, being too sedentary, so on and so forth. It is not always predictable what will cause symptoms. Outside of a positive ANA and a one time barely positive antibody for Sjogren's, blood tests show no more positive results. I understand that whatever autoimmune disease I am dealing with may very likely still be in developing stages. I have had issues for 10 years now, which have slowly changed and developed into my current symptoms. My question is this: With so many positive ANA tests, is it most likely I am dealing with an autoimmune disease? Any chance the results are false positive or whatever I am dealing with isn't autoimmune? I don't know if that's a crazy question or not. Thanks!
Hello!! Sorry you've been dealing with this for so long I have lupus but I am also a medical student. What we learn in med school is that positive ANA tends to mean dealing with some sort of autoimmune disease. ANA stands for antinuclear antibody and it is made in our bodies as a response by our immune systems to basically attack our own healthy cells (as our immune system thinks our cells are something foreign like bacteria). Considering most of your other results are negative makes the diagnosis a bit more vague but since you have multiple positive and high ANA results, it is very unlikely to be false. The next step is finding out what type of autoimmune it is, but sometimes that is harder to identify - some people just have a generalised autoimmune issue. I am by no means a doctor (yet!!) but I thought it was worth sharing what I have learnt in uni as well as what I know from my own diagnosis and experiences. And its not a crazy question ! Hope you are coping okay with everything x
I have Sjögrens. I would think even a mildly positive Sjögrens antibody along with a positive ANA would be significant, might even mean systemic. I hope you can get a dx and treatment.
Just to open this up beyond ANA seropositivity/negativity in AID zebra (rare conditions) patients, because, as BrooklyneDeanne is saying, ANA & seropositivity are only part of official diagnostic criteria…
I’m an unusual combination of rare conditions/diseases: have simultaneous infant onset lupus & primary deficiency disease (panhypogammaglobulinaemia which means I cannot make antibodies in response to any sort of ‘challenge’ inc vaccines) …been living with this rare & contradictory combo all my life
am 69 & went without immunosuppressive meds & immunomodulation IgG replacement therapy until my late 50s…been ANA/seroneg since at least my early 50s, but still meet enough official criteria for lupus & my secondary AIDs (sjogrens, small vessel vasculiyis etc) to be officially diagnosed. Also have hEDS & Diethylstilbestrol Syndrome which my consultants think tipped my genetic predispositions over into all the immune dysfunction.
For all this, am in long term care at my Univ Hosp with immunology, rheumatology & gastroenterology & gynaecology. Also in secondary care with ENT, Dermatology etc. I often wonder whether I was seropositive in my early years/decades,while my already PID-depleted immune system was burning itself out due to this simultaneous AID+PID thing. I like this official article re the diagnostic pitfalls for rare disease patients (nada28: it mentions Students 4 Rare Diseases: do you know if this med students org is still active? )
“When you hear the sound of hooves, think horses, not zebras.”This phrase is taught to medical students throughout their training.In medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions.But many medical professionals seem to forget that “zebras” DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions.”
Hi! When I read your query it certainly struck a chord with my own history and ongoing sporadic symptoms. I am still in the the process of diagnosis - which I now know will take a long, long time, judging by the life stories of folk on here and elsewhere online! My way of dealing with things now is to just take each day and keep a brief record of symptoms and dates etc for when I speak to my rheumatologist and any of the other clinicians I’m invariably being referred to on my most likely lupus journey🤷♀️ …I hope you find the answers and treatment you so need, sooner rather than later, but try not to become too anxious as I’m sure that’s one of the key triggers for flares?!
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