ANA Titer 1:1280 pattern homogeneous and speckled o/w negative work-up

@windyshores - Glad to know you are now being treated by the right specialist. Not only do they not seem to care about numbers, I really see no care about the quality of life for others. Their job was to see me, do whatever tests they felt necessary and moved me around the system until I find someone who cares enough to get me the right treatment. Very frustrating

Mine all indicate systemic sclerosis. Some indicate Sjogren's or lupus as well. None of my five patterns correlate with the standard antibody testing rheumatologists normally run. (Most of those you listed.) My ANA is also 1:1280. Normal folks can have elevated ANA titers but usually not that high.

My genetic results suggest either Behçet's or systemic sclerosis. My understanding is that it would be rare to have both.

But something is clearly up.

I have high IL-10, IL-6, and IL-2R cytokines and occasionally elevated C3. CRP and ESR are fine, though. I have a positive HLA-B51 antigen test. I also have atopic dermatitis, a 5 cm ascending aortic aneurysm, a dilated pulmonary artery, IBS-C, GERD, hair loss with occasional lesions (follicitis?), and my eyesight is getting worse. Elevated pressures, small cataracts, wicked dry eye, and I'm losing perception in my infranasal region in my right eye on field tests.

I also get mouth sores.

I'm taking pictures of whatever I can now: hair lesions, rashes, mouth sores, red eyes. I'm gathering all my records.

It's insane trying to get an autoimmune/autoinflammatory diagnosis. You really do have to be mid-flare or do all the work yourself, even with an ascending aortic aneurysm.

@trspac and others the author of the book I mentioned got relief seeing an integrative doctor. I have also seen a functional medicine/integrative medicine doctor. They look at the whole picture rather than one organ system at a time and generally accepting and empathetic. Treatments can be expensive if supplements are involved but it is worth trying that route regardless.

@windyshores - I reached out to one a few weeks ago. Just trying to locate someone with lots of experience but definitely will keep that in mind. Thank you for the great advice. I'm very appreciative

@larak - First, I hope that you find some relief with all that you have going on. I wish I could help you and everyone struggling with autoimmune conditions. I am beginning to realize you are your own best advocate. I have been doing lots of research on my own so I can be sure to ask the right questions. Based on my research anything above that high is more likely an autoimmune condition. Maybe just not flared enough during lab testing. I don't want to imagine being any worse than I am now. I just want to be treated properly so I can be coming my own body again. Keep fighting for yourself and don't give up.

@larak @trspac I can certainly tell that both of you need to find good doctors. The following 2 organization keep of qualified rheumatologists around the country so you may have to treat yourself to an outing
https://rarediseases.info.nih.gov/
https://rarediseases.org/
Let me know if you have any luck finding a doctor! Remember, though, that you may be a distance away from the offices so may have a drive! It’s worth it!

@becsbuddy - Thank you! I am looking into the Mayo Clinic or a University Doc. Exploring my options but need to try and get sóme relief first while I continue to look

I had that same pattern. I ended up having an autoimmune disease called Celiac.

It is very possible that you have sero-negative Lupus or Rheumatoid Arthritis w/o RH factor (I have both). Unfortunately, many rheumatologists are loathe to diagnose those of us who fall into these categories, so we have to be our own advocates and stay in their faces (sometimes, you might need to exaggerate your symptoms, which is ridiculous), or seek out a new medical professional.
My tongue now seems to be permanently swollen and the dry mouth certainly doesn't help matters as well as comfort, but I keep biotene gel or spray in my bathroom and use it when I get up in the middle of the night. I also use the lozenges during the day.
I wish you the best on finding a rheumatologist who will pay attention to YOU and your symptoms.

@ceriselu - I don't expect a diagnosis but I do expect to get something for comfort. My quality of life has diminished significantly. At this point I am beginning to realize I need to learn how to live with this until I can find someone who actually cares and understands what I am going through. I have inner cheek swelling and was asked was I biting my cheeks. Yes I do but not intentionally, they are in the way. One day at a time I keep telling myself. I am looking into acupuncture. I am all over the place because I don't know what to do. I'm the meantime lots of mouth care. I wish you the best as well and I certainly how you feel. Sorry that you have to go through this and I hope you get better.