Recently I tested positive for ANA and SSB, but when I was tested for a level, ANA was negative. I have mild eye and mouth dryness, very dry lips and skin. My doctor now says I don’t have Sjogren’s, but I can get the lip biopsy to confirm. I also have multiple GI problems - GERD, constipation, and food sensitivities. Is it possible to have Sjogren’s at a low level? Has anyone had this experience?
Hi Polly,
Just because a blood test might be negative, that does NOT rule out Sjogren's. I was diagnosed in October, 2014. I tested positive for ANA twice, but the first time a doctor tested me for SSA and SSB, I was actually negative. Later on, when a rheumatologist tested me again for SSA and SSB, I was positive that time. And that, combined with my symptoms, was when he diagnosed me with Sjogren's. I don't know exactly why, but for some reason the antibodies might not show up in a blood test, even if you do in fact have an autoimmune disease. And then, it might be positive one time, but negative on another. So one negative test doesn't rule anything out.
For me, the symptoms were absolutely horrible. Dry eyes and dry mouth were actually the last symptoms I got. I was hit with debilitating fatigue first, where I was practically bedridden. Then all my joints started hurting, and my feet were freezing cold all the time. Then I got really bad headaches and dizziness almost every day. I was getting hit with one thing after another and steadily getting worse. I literally thought I was dying. When I finally saw a better doctor and started taking medicine, I felt like it saved my life. I get relapses sometimes, and I will never be the same as I was before all this started, but overall I'm doing better than I was a year ago.
I would say that if you have any worsening symptoms or new symptoms, then definitely insist on more tests. Especially if your joints start hurting or anything like that. You would know your body better than anyone, and if things just don't feel "right" then insist that your doctor investigate it more. One negative blood test doesn't rule anything out.
Thanks for your input;) I don’t have joint pain thankfully, so at this point it’s a wait and see if symptoms worsen over time.
I also have test positive AND negative. My family doctor says that he was taught in medical school that that is not uncommon. Don't let the doctors brush you off if you still have symptoms, which it sounds like you do. Many of us have had this happen to us. Be persistent and get second and third opinions. I am a retired nurse and a good doctor will treat the patient, NOT the lab tests.
I agree with the previous post. I have improved with treatment, the fatigue is not so debilitating, but still there. However I can function now. Life can be good again. Yes, it required quite an adjustment on my part for what is normal. Nevertheless, I LOVE LIFE again. You can too. Glad you came to this web site to get support. We sure need each other. The best to you and prayers for answers.
1 Like
I’m in the same boat. Horrible joint pain… Sometimes so bad I can barely move. Stage four dry eyes. Dry skin. Parotid lumps. Vertigo. Gerd. Very tired most of the time. I was on methotrexate and Plaquenil but my liver could not handle the methotrexate. I had a negative ANA at first… Now it’s positive. Negative Sjogrens test but they say I have Sjogrens. Very confusing at times!
Hi Polly! I had elevated ANA levels twice and all the rest of the time everything has been negative for 8 years. It is hard to get a doctor to listen with labs like that! I finally went to an oral surgeon for help with burning mouth issues and he believed I had Sjogren's. A lip biopsy was positive. I have aching joints, sore muscles,mild eye dryness, mouth dryness and burning, taste dysfunction, unbelievable fatigue, dry lips, ears, and skin, and psoriasis. Not to mention I can't seem to remember from one day to the next! I am on Plaquenil and low dose prednisone which seem to help most of the time. I'll be thinking of you and anxious to hear that you are getting some answers!
Luckily, I don't have joint pain (yet), but my sister and mother both have bad cases of RA developing in their early 50s. I'm only 47, so maybe I have a few years before that kicks in. I recently had surgery for swallowing dysfunction. The GI team was stumped for years as to why my mother and I both had swallowing issues (food/liquids going down slowly, sometimes food getting stuck). When I told them about Sjogren's, it made total sense to them, but the Rheum doc still does not think I have it, she has no explanation for my dryness symptoms or metallic taste on my lips. Anyway, after surgery for my esophagus which entailed excising a diverticulum in my esophagus and rewrapping my stomach for GERD control (Nissen Fundiplication), they kept me overnight and even though I had hours of fluids, once they disconnected me, I suddenly became completely dry in my mouth and couldn't verbalize what was happening. Pain all over my chest, shoulders, neck! I was in a panic and couldn't speak! It was very scary. The doc couldn't figure out why I was so immediately dry because I had so much fluid already. Once they hooked me back up and gave me some ice, I was fine. I'm on a liquid diet for two weeks while my esophagus and stomach heal from the surgery to fix things. Extreme fatigue through all this - sleeping three days, awake for just a few hours each day. I've added liquid iron to my juice to boost my iron levels (7) in hopes that hemoglobin will go up too (10). Surgery is always a big deal for me and I hope I don't have to have any more for some time. Lip biopsy in a few weeks - maybe it will provide some answers. I also have a small lump in the gland under my tongue. Going to have that checked out too.
Wow, Polly…sorry to hear you are dealing with so much. I had the same experience as many here, that test came back negative for years. It wasn't until the Sjo test came out that we confirmed positive. Thank goodness something caught it for me. I don't know if it will help but Sjogren's Syndrome Foundation (research, etc) has lists of its site of things to do or talk to the doc, anesthesiologist, room nurses, etc about since surgery really can be a big deal for us. So many people aren't knowledgable about this so its not bad to look over. We have to get very good at advocating for ourselves, sadly. Please keep us posted on how you are doing.
You are not alone. Lip biopsy was the confirmation for SS. I'm actually not sure why my doctors bother taking my tests results seriously. I usually either don't show what should be there, or my numbers fall just short for confirmations- every now and then my numbers show up for one thing or another. Doctors are actually supposed to base their diagnosis on symptoms, patient history and family history- not just lab reports. Some doctors do this, but insurance companies seem to want the lab results instead of all the other important stuff. Hang in there, keep educating yourself and listen to your body. While you're waiting perhaps consider treating your symptoms: drink lots of water, get good rest, limit UV exposure, eat better. reduce the stress in your life.
Yup, doing all that. Thanks;) the tip of my tongue now has this “burned” sensation like I ate something hot. Is this a symptom? Two days now and I’ve been on a liquid diet still from surgery.
My tongue goes through that "burned sensation" too... usually I have eaten something that was too spicy. Sometimes it just happens though- usually when my mouth has been really dry and I've had extra stress. For me it's painful but goes away in a few days. Sometimes it's bumps, other times sores actually form. Every now and then I can't figure out why my tongue suddenly has that owie spot(s). I just take extra care with my food choices, use the biotene oral balance gel more often and wait for it to pass. Odd, I actually can't recall ever mentioning this to my doctor- I'll add it to my list, maybe she'll have an answer. In the meantime, considering you just got out of surgery (hope all else has gone okay and the only weird thing is your tongue) you should let your doctor or the surgeon know. Could be a reaction to something, it might actually be something that they hear about all the time.
Hi, I have had severe dry mouth , for about 3 months or so, the dry eyes about 3 weeks , also had a week of severely dry lips. I have been to several Drs at least a dozen times, tested twice for the SS antibodies and both test were negative also RF factor was neg and Ana was neg, c reactive protein was also neg. my tongue is so dry sometimes it sticks to my mouth. Drs don’t know what’s wrong with me and I don’t either. My eyes are always red and burning , I look like a zombie. My tongue has this non thrush dry white appearance that won’t go away. I am a male so I know that lowers my chances signicantly but I don’t know what to do. I have just scheduled several appt with specialist to see if we can figure this out. It’s very exhausting and I feel like I’m slowly getting worse. Pretty scary stuff
ohya my throat is always very hoarse, I can’t even speak very well, I did start pilocarpine which seems to help a lot but not to the extent I would like
Hi Polly. I just now received my blood panel results with a note from my GP, “negative on the ana which typically would be positive in Sjogren’s.” Not celebrating yet, though. I have severe dry mouth with tongue and mouth sores all which started six months ago. I have been diagnosed with dry eye by my optometrist. Right now Systane Ultra drops twice a day keeps me comfy. I’ve been treated for years for hypothyroid. I’m being treated for GI issues from my painful hoarse throat through my slow-moving esophagus down to my stomach. Currently undergoing many tests. I don’t have the horrible fatigue I’ve read about or any joint pain. I’m wondering too what my next step should be. Could I have Sicca Syndrome without the immune factor?? My very first post. Would love any advice. thanks.
Not everyone will have positive bloodwork, including SSA and SSB at diagnosis. It can take time (sometimes years) to develop. Have you seen a rheumatologist yet? Not everyone has every symptom.
Thank you so much for replying, Stoney. No, I haven’t seen a rheumatologist yet. Actually I just got these results back a few hours ago! After hours of research today, I’ve decided to see my GP next week armed with all my notes to set up a plan for whom I need to see next and for what reason. I’m scheduled for various GI tests because of the sudden GI issues I developed along with the dry mouth and dry eye issues–all in the last six weeks. I just retired to a ‘new full-time job!’ 