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

Posted by trspac @trspac, Dec 6 2:26am

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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windyshores | @windyshores | Dec 7 9:38am
In reply to @trspac "@windyshores - I agree 100% that ENT is not the answer but trying to get my..." + (show)
@trspac

@windyshores - I agree 100% that ENT is not the answer but trying to get my foot in the door and trying to be open minded and agree to the referral from the rheumatologist. Heck, they are the specialists so one would think they know best. Maybe I will get an ENT like my first one who knows better and provides me with the necessary direction. Just seems like if I clinically have symptoms with an ANA that high a rheumatologist would not just come to the conclusion of glossitis unknown etiology with atypical symptoms. So frustrating. I will take Sjogren’s clinic into consideration. Likely will end up with a university rheumatologist or Mayo Clinic. I try to be hopeful but I have my days. I will continue to push myself until I am no longer in control of course. Just know the odds of a ANA being that elevated with symptoms are not in my favor. Being tossed around like this makes me feel as if these docs don’t really care about me. Book name?

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The Lady's Handbook for her Mysterious Illness. I didn't know your gender! It certainly applies to all but since most autoimmune illnesses afflict females, that is a focus.

In my experience rheumatologists don't got by the level of the ANA and I have read it does not correlate with clinical illness. I had an ANA of 1:5000 something and a rheumatologist claimed healthy people could have that ( Id bout it).

They have checklists of specfic symptoms and you have to check a certain number of boxes.

Is any doctor saying there is nothing wrong with you?

Since treatments are so serious in terms of potential impact, I think doctors wait until they are really sure of need. Plaquenil used to be an exception.. Of course COVID brought Plaquenil risks (hydroxychloroquine) into the limelight.

REPLY
1 reply
cantek | @cantek | Dec 7 9:46am
In reply to @trspac "@cantek - I reached out to Mayo clinic yesterday. No one should have to wait for..." + (show)
@trspac

@cantek - I reached out to Mayo clinic yesterday. No one should have to wait for a flare to be given the diagnosis if clinically they are presenting with all the dryness. Rheumatology referred me back to ENT at a University hospital so I am willing to go just to get my foot in the door. Thanks for sharing your story. It gives me hope for future appropriate treatment. The dryness of my mouth is causing so many other issues with my oral health and rapid weight loss. My rheumatologist let me know he did not know what was wrong with me and my chart noted atypical symptoms. All this because the stress of all this has caused me to grind my teeth at night thus leading to tongue and cheek swelling with tongue sores because my teeth irritate the tongue leading to my diagnosis of glossitis unknown etiology with an ANA of 1:1280, wow just wow. I am my own advocate so will continue to fight for myself through this crazy process

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I am so sorry. This sounds very painful! Has anyone offered an rx for miracle mouth wash for the pain?
Is the weight loss due to pain with eating?
I think the test doesn't come back positive until you are flaring but I agree.
The oral meds are pretty nasty so they don't want to start them if they aren't sure.
Get the mouthwash and work on your microbiome in your gut. Don't eat any processed food and watch carefully for allergic responses.
Did you say you are being tested for allergies?

REPLY
2 replies
trspac | @trspac | Dec 7 9:49am
In reply to @windyshores "The Lady's Handbook for her Mysterious Illness. I didn't know your gender! It certainly applies to..." + (show)
@windyshores

The Lady's Handbook for her Mysterious Illness. I didn't know your gender! It certainly applies to all but since most autoimmune illnesses afflict females, that is a focus.

In my experience rheumatologists don't got by the level of the ANA and I have read it does not correlate with clinical illness. I had an ANA of 1:5000 something and a rheumatologist claimed healthy people could have that ( Id bout it).

They have checklists of specfic symptoms and you have to check a certain number of boxes.

Is any doctor saying there is nothing wrong with you?

Since treatments are so serious in terms of potential impact, I think doctors wait until they are really sure of need. Plaquenil used to be an exception.. Of course COVID brought Plaquenil risks (hydroxychloroquine) into the limelight.

Jump to this post

Thank you! Will be reading for sure. No one has said nothing is wrong, rheumatologist just stated he did not know thus referral back to ENT for glossitis unknown etiology. I know the etiology, grinding or bruxism due to the stress of my mouth symptoms. Day 2 of pilocarpine, so I’m giving this a chance but keeping my ears and eyes open.

REPLY
trspac | @trspac | Dec 7 9:56am
In reply to @cantek "I am so sorry. This sounds very painful! Has anyone offered an rx for miracle mouth..." + (show)
@cantek

I am so sorry. This sounds very painful! Has anyone offered an rx for miracle mouth wash for the pain?
Is the weight loss due to pain with eating?
I think the test doesn't come back positive until you are flaring but I agree.
The oral meds are pretty nasty so they don't want to start them if they aren't sure.
Get the mouthwash and work on your microbiome in your gut. Don't eat any processed food and watch carefully for allergic responses.
Did you say you are being tested for allergies?

Jump to this post

@cantek - allergy consult this week with hopes of testing recommended. Have not eaten processed food for months and I am relatively healthy anyway prior to getting stuck with this. Been using OTC products for dry mouth only as advised by rheumatologist. No appetite for food really since everything feels funny in my mouth. Been taking in avocados, beans and sweet potatoes mainly all plain with no seasoning. Mouth is only sore when I grind which is not the main issue right now. Dry like the dessert in my mouth, somewhat in my eyes now but I just keep saline with me since I wear contacts

REPLY
windyshores | @windyshores | Dec 7 9:59am
In reply to @cantek "I am so sorry. This sounds very painful! Has anyone offered an rx for miracle mouth..." + (show)
@cantek

I am so sorry. This sounds very painful! Has anyone offered an rx for miracle mouth wash for the pain?
Is the weight loss due to pain with eating?
I think the test doesn't come back positive until you are flaring but I agree.
The oral meds are pretty nasty so they don't want to start them if they aren't sure.
Get the mouthwash and work on your microbiome in your gut. Don't eat any processed food and watch carefully for allergic responses.
Did you say you are being tested for allergies?

Jump to this post

Just to be clear, if the ANA is positive it will always be positive. Doctors don't seem to care about the actual numbers and say they do not correlate with severity of illness. They don't even test mine anymore.

I did request an ANA reflex panel after years of a systemic lupus diagnosis. It tests for lots of antibodies that can cause the positive ANA. Positive for scleroderma is >1 and high antibodies is >8 and I am >8. Same situation as you. Yes I have GI symptoms, some heart and lung issues, kidney eGFR dropped, arthritis, nystagmus, and the skin on my forearms is tough and bumpy. But no scleroderma diagnosis yet in spite of the high antibody test. I go to an endo now who specializes in it because a general rheumy was not useful.

REPLY
1 reply
cantek | @cantek | Dec 7 10:09am
In reply to @trspac "@cantek - I reached out to Mayo clinic yesterday. No one should have to wait for..." + (show)
@trspac

@cantek - I reached out to Mayo clinic yesterday. No one should have to wait for a flare to be given the diagnosis if clinically they are presenting with all the dryness. Rheumatology referred me back to ENT at a University hospital so I am willing to go just to get my foot in the door. Thanks for sharing your story. It gives me hope for future appropriate treatment. The dryness of my mouth is causing so many other issues with my oral health and rapid weight loss. My rheumatologist let me know he did not know what was wrong with me and my chart noted atypical symptoms. All this because the stress of all this has caused me to grind my teeth at night thus leading to tongue and cheek swelling with tongue sores because my teeth irritate the tongue leading to my diagnosis of glossitis unknown etiology with an ANA of 1:1280, wow just wow. I am my own advocate so will continue to fight for myself through this crazy process

Jump to this post

Get to Mayo. They employ the top MD’s in the country. Best care I have ever had and Im an RN.

REPLY
Lara K | @larak | Dec 7 1:44pm

What are your actual AC codes from ICAP, the International Consensus on ANA Patterns?

If your ANA lab results just says "Pattern: Speckled," they're being lazy.
https://academic.oup.com/jalm/article/7/1/322/6498242

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trspac | @trspac | Dec 7 2:19pm

@larak - 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

REPLY
trspac | @trspac | Dec 7 2:32pm

@larak - Thank you for providing this source. Unfortunately, I am at the mercy of those who provide me with medical treatment. Essentially during the last contact with the clinic the doc asked me do I want pilocarpine or not and it was my choice but kept stating my workup was all normal this referral to ENT and for what I'm not sure but send with the diagnosis of glossitis

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