Hi everyone! I am starting on year 3 of trying to figure out what my diagnosis is, but year 6 of symptoms. My ANA has been 640, 1280, and then greater than 1280, then suddenly last test negative. I have checked this box and know that, despite the previous negative ANA, something is definitely wrong. I check all the boxes for having an autoimmune disease, and am usually quite symptomatic (although somedays are much better than others). Despite all this, tests for other antibodies continuously come up negative. Has anyone experienced this? What is a good next step in this case?
Symptoms are:
Numbness and tingling in limbs and sometimes face and mouth
hi again Brook. I definitely would consult a neurologist. Perhaps you have a different autoimmune condition or something else. Sounds like whatever it is affects you neurologically.
i have most of your symptoms except tremors and pins and needles in the face but get them in the feet only. I have negative blood tests except dsdna positive which has now reduced to borderline. I was diagnosed on symptoms for sjogrens and because of positive dsdna i got the lupus diagnosis after. Bloods can often turn up negative. You need a rhuemy to look at symptoms not just bloods. medication has made quite a difference but you only get it with a diagnosis. Frustration ensues. Took me 15 years to get a diagnosis. Hope you get somewhere soon.
Hi! Thank you for your response. I agree, I definitely need someone who will look at symptoms, not just blood results. So far, this is proving to be tricky. It is helping to learn from others and their journeys to getting a diagnosis.
Hi! We have checked for hypocalcemia. That came back fine. I do have issues with low vitamin D3, so have to take a high dosage daily and watch my calcium levels. I agree, my symptoms may very well be from several causes.
Hello I’m sort of going through something similar. Tomorrow I’m going to see another rheumatologist for a second opinion taking all my test results for scrutiny. Reading your list of symptoms etc is correct everyday is different. I’m at the stage with all you’ve listed where I also have trouble walking from the off it’s like walking up a steep hill with a lead suite on with stiff muscles and swollen joints to boot. That’s the only way I can describe it when I’m able to get out of bed. 🤞🤞🤞🤞
I am in the US and my new rhuemetologist ordered this particular test for me. My insurance would not cover it but the manufacturer only charged me the $45 co-pay.
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