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Hi, This is my first post, so I have a lot of details here. Sorry for the novel...
I have been undergoing extensive testing for the past 8 months. Had walking pneumonia in February, 2007. Lung nodules (calcified and noncalcified) as well as bilateral hilar adenopathy and axillary adenopathy were discovered on chest xray. PET scan showed SUV in the hilar and axillary nodes, but not in the lung nodules. Seven months later, had a second PET scan, which showed no change in the nodules or adenopathy. Had some axillary lymph nodes biopsied. Results were benign reactive lymph node with sinus histiocytosis and lymphofollicular hyperplasia. Sugeon recommended lung surgery to get answers.

PCP wanted to do more bloodwork first. Results of bloodwork are that several tests for Epstein Barr Virus showed up positive. Rheumatoid Factor showed up positive at "14H". Most concerning is that my ANA (choice) ANA IFA was positive. And Anti-Nuclear AB (IFA) titer was "1:1280 or greater" (it doesn't list the specific result), which I understand is very high. The pattern was nucleolar, which I believe is more likely to be scleroderma.

I have mild dry eyes, and my ankles click when I walk, but they do not hurt. That clicking started several months ago. I have no skin disorders/rashes. I exercise most days and have a lot of energy. The only new symptom I have is mild, but constant heartburn. Any ideas if this could be sjogrens syndrome, definitely scleroderma? Definitely not lupus? I have a second cousin with lupus and brothers who are diabetics (type 1). My mother died of acute myeloid leukema at 69 years of age, so a lot of autoimmune disorders do run in my family. I can't get in to see my PCP to go over these results until early January. So I'm very worried and overwhelmed. Any thoughts would be greatly appreciated.
Hello, Vee--
Thank you very much for taking time to read about my history and offer your assistance. I hope you finished your holiday shopping! I have only had the initial bloodwork done for the autoantibodies. When I see my GP next week, I assume the next step will be a rheumatologist appt. and more bloodwork. I'm curious to know if having the extremely high ANA titer means I will definitely develop symptoms of/a disease or if I already have hidden tissue destruction going on of which I am not aware. Or if the high titer could be due to the EBV positive results I also had. I have read about autoimmune hepatitis and wonder if I may have that due to the acid reflux I've had for several days (since finishing a round of metronidazole for a sinus infection.)

As far as the pneumonia, apparently, the hilar lymph nodes being inflamed now would not still be due to the pneumonia effects. And none of the docs can explain the lung nodules without a biopsy, which would require a major lung surgery. But they are not due to the pneumonia. The lung nodules haven't grown in 7 months, so we're taking a wait and see with that. I have heard that with RA, one can develop lung nodules. But I would doubt that's what I have since I don't have any arthritis symptoms. I was put on an antibiotic for the pneumonia, but I don't believe it was one that causes the high ANA titer. Plus, that was 10 months ago. Everything I have read about scleroderma is so unsettling. Thanks again for your insight...
Hi, Erin--
Thanks very much for your reply and thoughts. I will definitely take your recommendation to try to ensure the docs come to a solid diagnosis rather than a possible one before putting me on medication. I have also heard a lot of bad things about Prednisone; but I understand that is often the course of treatment for many autoimmune diseases.

This holiday season has been difficult so far due to my picking up my labs last week, but not being able to get in to see a doctor for another week. So of course, I'm fearing the worst. I'm stunned by all this because I truly only have one bothersome symptom, which could be entirely unrelated to any of these diseases. If I didn't know my autoantibody titers were so high, I'd be feeling great and not have a care in the world. I went for a 4-mile hike yesterday and had no clue that I may be sick.

I hope you get some resolution on your situation soon. Sounds like you have been going through a lot the past couple years. For me, going through the past ten months of various potential diagnoses including metastatic lung cancer, lymphoma, breast cancer, sarcoidosis, and now lupus and scleroderma has been stressful to say the least.

If you don't mind my asking, why do they now think you have lymphoma? Are your lymph glands swollen? I understand there is a condition of persistent idiopathic lymphadenopathy, which I may have and basically means nothing because the docs can't figure out what is causing the swollen nodes.

Anyway, I wish you well with your lastest tests. I did a lot of research about lymphoma since I had a biopsy surgery recently to rule that out. I read that, depending on the type of lymphoma, it is very "treatable/curable". So I guess in some respect, that's good news.

Take Care--
Hi, Erin--
Thanks for all the details about what you've been going through. I can see why you are frustrated and at your wit's end! I know what it's like to wait for PET scan results. I once had to wait 3 weeks because my doc went out of town. I didn't light up like a Christmas tree, but did light up in several areas in my chest and axillary lymph nodes. My surgeon says that even though my armpit nodes were benign and reactive, she doesn't know what they are reacting to and the only way to find out is to operate on my lungs and take out samples of the hilar nodes. That major surgery, a thoracoscopy, is something I've been trying to avoid due to the long recuperation period. She thinks I may still have lymphoma (indolent form) because of the hilar nodes still being swollen.

I hope you get some resolution with your results and that your docs can find good meds to help alleviate more of your symptoms.

Yes, I feel great now, but worry that my life will only get "worse" in the future once a diagnosis is made. I guess most people go through that fear. I've always been very healthy and athletic and to hear that I may have problems that change my entire life, even shorten it, is obviously depressing and scary.

I'll think positive thoughts for you and do wish you well with whatever comes your way.





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