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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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@trspac that makes sense. I guess it could be a "second opinion"! I find PT's and functional medicine docs to be helpful. I hope you get relief. I totally get your frustration and wild goose chases are exhausting. I truly hope and believe it will eventually work out for you. Fingers crossed!
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2 Reactions@windyshores - I really appreciate the encouragement.
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2 ReactionsI could have written your post I feel like! August 2023 I started getting sores on my tongue. One didn't go away for a few weeks so they did a biopsy and removal of it. It showed "General traumatic ulcer". Since then, I have had them off and on. Right now, I have three, including one on the very tip of my tongue. They vary from ulcer looking sores to swollen tastebuds to deep crevice cracks. I have seen a dentist, specialty dentist, and oral surgeon. I hated magic mouthwash, and because it only lasts until you drink something and wash it away, I don't use it. I do keep a bottle of viscous lidocaine in my purse at all times. I drink over 200 oz of water and sodas and such a day because not drinking constantly makes my mouth hurt. I recently also started using Biotene. Every time I go to the dentist, he comments on how dry my mouth is. It was much, much better when I wear my nightguard at night so that I do not rub my tongue against my teeth edges, but I had two crowns a month ago so I need a new nightguard. I also am so utterly exhausted that I was tested for Narcolepsy and despite not having it, my psychiatrist put me on a sleep agent for it to just be able to function. I have also developed high BP in the last year. My psychiatrist swears I have something autoimmune and that no one is looking at the whole body, just treating symptoms. Mayo Clinic declined to see me about a year ago.
My ANA in November 2023 was 1:1230 and Dense Speckled. All my titers for the specific diseases were negative. I saw a Rheumatologist who looked at my results and she said that some people have a positive ANA for no reason and she didn't think I needed to see her. I have a new PCP and she didn't remember I had had an ANA so she ordered another one a few weeks ago. My ANA is now 1:5,120 and Homogeneous. My PCP does not like that increase and says the change in pattern is worrisome, so she is referring me to another Rheumatologist (actually an APRN that she really likes), but they can not see me until April.
NOW, I am having all kinds of cortisol tests. My Dexamethasone Suppression Test was just barely high, but my 24 hour urine was normal. I have an adrenal CT on Friday.
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1 ReactionIt’s like a murder mystery, trying to put the facts together. Almost 4 years I have had pressure in my head , two ANA test 1:640/ 1:320 two DSDNA both in the Indeterminate range , other antibody tests show negative…what can I say other then what I tell my self .. keep faith !
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1 ReactionI have Systemic lupus, Sjögren’s and Graves’ disease is now hashimotos since having my thyroid out. Most of the time my Esr and crp tests don’t show inflammation but when I get mouth ulcers I find vitamin E capsule or tube of oil clears them up . It’s my eyes that have been extremely inflamed and dry for months now, that troubles me the most along with extreme tiredness. Using maxidex drops at the moment with hylo forte drops and vita Pos ointment in eyes at bedtime. I do feel better in the cooler months though.
I see the Neurologist on the 10th of January and he will do another EMG test, how quick my nerves react with electric shock. I showed neuropathy in my legs and hands in first test he did. Key is being properly diagnosed, it is very difficult to pin stuff down . A MRI is also scheduled, it could show white matter , which would coincide with DSDNA test results.. so it could also be Neuro Lupus .. it sucks to have, but I do find it fascinating how the body works .. or should work.. lol