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ANA Titer 1:1280 pattern homogeneous and speckled o/w negative work-up
Hello. Desperate for help and don’t know where to turn since Rheumatologist stated they don’t know what is causing my symptoms. November 6,2024 first high positive ANA titer 1:1280 pattern homogeneous and speckled with a repeat test on Nov 14,2024 showing highly elevated ANA titer (1:1280) with a speckled pattern only after repeat, alongside negative results for other specific antibodies like anti-dsDNA, anti-Smith, SM/RNP, SCL-70, negative anti-Ro/SSA, negative anti-La/SSB, normal RF, normal C-Reactive Protein, ESR, Folate, Complement C4, Complement C3, Serum Iron, TIBC with low normal WBC, low normal HGB, low Unsaturated iron binding and a normal urinalysis, normal lip salivary gland biopsy with TMJ pain and dry mouth, globus sensation and a feeling of leakiness or fluid coming from the gums, normal parotid ultrasound, muscle aches, and fatigue. Being referred to tertiary care ENT by Rheumatologist since original diagnosis was glossitis after being referred to an ENT initially from Internist for nasal polyps. ENT on Oct 31st determined no polyps and after one look in my mouth said likely systemic due to large tongue and dryness. Tongue only gets swollen if teeth irritation causing sores due to dryness. I have been struggling since Jun 2024. Rheumatologist was kind enough to prescribe pilocarpine with a 4 week f/u but this is with a diagnosis of glossitis unknown etiology. I will start this today, Dec 6,2024. I have an allergy consult next week. I’m just lost looking for direction as my own advocate through this journey. Any suggestions will be greatly appreciated.
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What was your AMA? I have PBC which is somewhat of a sister disease to Sjogren’s and also causes dryness. But that is always initially high liver functions tests and AMA. Also can suggest the Sjogren’s Advocate. She is an MD with Sjogren’s and her site is extremely helpful, you can also get her newsletter. I follow because am always looking for ideas for dryness myself as PBC causes it as well. She also went through a long path to diagnosis and she has great shortcuts. Also keep switching until you find a good rheumatologist. When we moved I went through 2 and then found the 3rd (the charm I guess), she is an absolute gem. Good luck
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2 Reactions@ccps101 - Hello. Thank you for sharing. I ended up going to the Mayo Clinic and it was confirmed I have Sjogrens. I have been taking hydrocloroquin 200mg for a little over 1 year now and it has helped a small amount. Something is better than nothing for me. Waiting on the new drug by Novartis which is more specific to Sjogren since clinical trials look favorable. I have to look up PMB, am not familiar. My ANA titers have all been 1:1280
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1 ReactionYou absolutely do not have to have positive test markers to be positive for a disease like Sjogren's!!! All of the stories that I read on here are so far or so frustratingly, similar to mine andSO FAR OR SO FRUSTRATINGLY SIMILARsound. So similar to mine, which has still not reached its conclusions. But at least I have finally been diagnosed with sero-negative Sjogren's. The latest peer-reviewed research out of top autoimmune research institutions like John's Hopkins, the NIH, even the NHS (across the pond) have well documented that patients who have Neuro-Sjogren's ( which is basically Sjogren's that has advanced to a point where you're having neurological manifestations, like dysautonomia or (like me), it's developed into small fiber neuropathy.
So, you are doing the right thing to stay on top of these physicians. The Sjogren's Advocate actually provides you with pieces of clinical data that you can share with your physicians. That back up all of the points that you've made in your original message about being dismissed by physicians, having them make you feel like it's in your head, or my favorite, them attributing everything to age or menopause, and especially your point about if you don't have any positive markers, then you don't have Sjogren's.
The physician who painstakingly curated that site actually struggled with a similar journey, and she has spent all of this time and energy putting together information to help make it easier for those of us still in the frustrations of our journeys. It's worth taking a look . I WISH YOU THE BEST OF LUCK.
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3 Reactions@g8torgirl71
Forgive me. This is the first time I've ever commented on a website like this before, and I can no longer write without pain because during the last 6 years I've been fighting this battle for answers, just like you, my multiple autoimmune diseases were allowed to progress. And have now affected my neurological system, my bones and pretty much every other part of my body.
ANYWAY, I realized that my response was missing an important part, which is the point about not needing to have positive markers to be diagnosed with Sjogren's. They are supposed to be treating the symptoms as well.Even their own guidelines say that. The research that she references said something like sixty percent of the patients who have neuro-Sjogren's don't have positive ssa or ssb, AND have generally tested with higher levels pain than patients who were positive for those markers. Hope that helps it all
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2 Reactions@g8torgirl71 I certainly understand and will keep you in my Prayers as you go through your battle. There is a first for many like myself when I so desperately found this website and started posting. The best advice I received was keep fighting for yourself while learning about your symptoms along with the possible conditions that maybe the cause. I drastically changed my diet as well which I believe has helped tremendously. Whole Foods primarily and less inflammatory foods. Lots and I mean lots of water daily. I just consider my current state a new normal. Not the best but not like it was prior to some form of treatment. Thank you for the encouraging words. Continue Prayers to you.