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ANA positive then negative then positive...
I have spent my whole adult life with strange symptoms. As a child I would get high fevers and I would have bouts of Alice in Wonderland Syndrome. It was feeling like my body parts would get big then small. I also experienced "seeing" shapes get big and small. I was not actually seeing this. My eyes are closed and I would visualize it against my will. It caused quite a bit of anxiety for me. But it went away as I became a teenager. Then I started having skin issues. It looked like eczema. It was so itchy. I got it on my arms and fingers. When I was in my 20s I started having hip pain. Diagnosed with bursitis. This was the first time I had a positive ANA result. I seemed to become allergic to the sun especially when I was pregnant. I would get those itchy eczema like bumps on my chest. I also had a yeast or fungus all over my back and chest only when pregnant. Curiously my sister had the same experience 10 years later during her pregnancies. It was quarter size circles all over that were intensely itchy. I have an itch on the bottom of my big toe that has come and gone for 26 years. The same toe started getting numb in 2010. I started experiencing pain in my shin and a doctor said it could be ms. I brushed it off (no insurance) Then in 2012 , I was having pain in both legs. I elevated them and went to sleep. When I awoke, I had pain, numbness and tingling and trouble coordinating my legs to walk. It was both legs from my feet to my thighs. It has been 10 years and I have experienced pain numbness and tingling everyday since. Anf the AIWS came back. I have seen countless doctors. I have had MRIs of my full spine. My ana goes back and forth from positive to negative. My titer is 1:80 which is low. Doctors have literally said healthy people can have a positive ana. I am not healthy. Makes me angry. I take 600 mgs of gabapentin to help some pain. I do not want pills. I want a diagnosis. Idiopathic neuropathy is my diagnosis which is no diagnosis at all. It is a symptom of something. I do have CKD stage 3. My grandma had lupus and CKD and died from ILD at 77. My uncle had ILD and died at 68. My mom and brother also have CKD. My son and daughter have CKD. My son also has celiac disease. It all sounds hereditary and autoimmune to me. I get sick of doctors who just want my co-pay. Blood work looks good see ya in 6 months... Do my symptoms and family history make sense to anyone? Sorry for the long post.
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I have been referred to a new rheumatologist. Hopefully this new doctor will order DNA.
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1 ReactionYou must mean Sjögren’s Syndrome. It’s now called Sjögren’s Disease.
@comptomama I’m glad you’ve found a new rheumatologist. Certainly hopes he listens to you and comes up with the appropriate treatment for you. I know that you’re hoping for some DNA testing. What would you like to learn from the DNA?
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3 ReactionsI would like to know what hereditary issues I would be predisposed to. My family clearly has something going on. A lot of Chronic Kidney Disease, Hypertension, Interstitial Lung Disease, Diverticulitis, and Lupus. If I could get genetic testing, my kids would not have to wait like me for diagnosis.
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2 ReactionsThank you! I will look into that. I also happened upon an article about Ehlers Danlos disorders. I always thought you had to be double-jointed for that one, but it turns out there are several types and not all include hypermobility. Though I do have hypermobility in my hands. Plus several other signs (whole colon diverticulosis, organ prolapse, hernia, neuropathy, brain fog, chronic fatigue) I do not want to make the new doctor think I am overreacting. All items listed are backed up in my records though. Fingers crossed for answers.
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1 ReactionDoes anyone has APS and is on warfarin How do you cope with the monitoring .Please let me know.
I have a familial predisposition toautoimmune diseases, and a diagnosis at ass1, proper time for treatment is definitely a plus. However, looking back on all the triggers, there is a clear pattern of
1. stress worsens all symptoms and triggers new SYMPTOMS/disease
2. physical/chemical triggers (concussion, pregnancy, covid-like SARS, Moderna vaccine)
3. lifestyle habits contributing to disease, food-environment related inflammation (excessive sugar, poor quality diet, environmental toxins -fluoride-mold-pollution,etc); smoking, heavy drinkng, sedentary lifestyle, too little or excessive sleep, poor quality drinking water, reliance on commercially prepared foods. etc. My suggestion is talk to children about autoimmune disease and how best to avoid onset through conscious living designed purposefully to stay as healthy as possible. All the best to you and loved ones.
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1 ReactionGreat advice! Thank you.
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1 ReactionHello I’m new to this group, and not sure if I’m a little too late to share, but I noticed you’re looking for answers just as I am. I will say having the DNA results that show you’re genetically predisposed to having RA/Lupus/Sjogrens.. etc. does not provide any assistance, solace, nor diagnosis. I had my 23 & me dna tested then used the raw data on Prometheus which uses your genetic data to identify scientifically written genetic studies which for me was at least I thought the answer.. I mean it’s the same dna that has positively reported that my eyes are blue, my blood type is O, I’m a female, I’ll have gallstones (s/p cholecystectomy), etc. However for the doctors.. given their complete ignorance of DNA, they simply said “that’s wonderful, once the disease becomes detectable we’ll know how to treat it”. That simply made everything even more frustrating.. it broke me. While my DNA clearly points to autoimmune, my labs bounce back & forth between something is wrong & wow you’re so healthy. I deal with debilitating illness on & off. I will say I’ve come to a point in my life where I’ve all but given up on an actual diagnosis. I stay positive, mind over matter!! I stay as active as I can, mind my diet, and take my vitamins!! One day I will have an answer, we all will!! It’s just a shame that modern medicine.. doctors simply won’t treat proactively, only reactively, with their highly unreliable lab studies!! When a Dr says even healthy people can have a positive ANA & a high CRP.. so why are you testing anyone then.
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4 ReactionsYou are 100% correct about doctors. Lab tests only give you a snapshot of your blood at the time of the blood draw. There is no definitive test for most of the autoimmune diseases so why use bloodwork as the deciding factor. I have been in pain for 11 years now and I pay good money to see the doctor who has no clue and is so condescending. "Everything looks good. See you in 6 months." Are you joking? I have read that once you have a positive ANA you should not retest. Either you are healthy with a positive ANA (meaning asymptomatic) or you have something going on and it should be investigated. I am very angry. I need to take care of myself as you do. But I am so tired of this. Btw- the rheumatologist who I was referred would not even call me for an appointment. I called them and argued back and forth about my referral and decided they would be ni different from any other doctor I have seen. I have not followed up. Why should I give then any more money for not helping. If there are any doctors reading our posts, Do better and encourage your colleagues to also so better. We live with our pain and disabling symptoms everyday and we do not need you to tell us we are healthy. If a doctor said to me, I know there is something going on and I just don't know what it is, I would respect that. But they prefer to say, "oh you're fine. Take these pills and let's take care of your cholesterol." Wait a minute doc, why am I taking gabapentin if I am healthy? Super frustrating. Hugs for you Crystalmm. You deserve better.
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