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-   -   Possible Sjogrens or what else? (https://www.neurotalk.org/autoimmune-diseases/237477-sjogrens-else.html)

MAT52 06-30-2016 03:32 PM

Possible Sjogrens or what else?
 
After five years of struggling to get a diagnosis that fits my symptoms better than RA - I learnt from a very knowledgeable oral medicine doctor this morning that I have gone from being autoantibody negative and occasionally equivocal, to having a clear positive ANA of 1/320. Also my IgG and IgA are both elevated and I am to have a lip biopsy and ultrasound of carotid and salivary glands ASAP to rule out or in Sjogrens Syndrome. Although I don't have the dry mouth and only mildly dry eyes she seemed to know that it is still possible to have Sjogrens. She feels my numb, tingling mouth is part of a progressive small fibre neuropathy and says the neurologist was wrong to dismiss it as mild and say it was caused by previously active RA. She says the positive results suggest Lupus, Vasculitis, Sjogrens or Mixed Connective Tissue disease are all more likely with these blood results. My CRP has crept up to 19 and my PV is 1.98 which is also high I believe. I'm under a new rheumatologist - my fourth in five years.

So can anyone tell me what the significance of an ANA 1/320 might be? I don't have the breakdown of these results yet - just what this oral medicine specialist explained verbally.

I'm struggling with fatigue, chronic constipation, disequilibrium, sweats/ fevers and palpitations with bone and nerve pain in my legs. Otherwise much of me has turned mildly numb, including my mouth and nose. My RA is innactive in my joints now and my rheumatoid factor has gone from a weak positive to negative in five years. I'm not on any disease modifying medication because I've had severe allergic responses to four of these.
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kiwi33 06-30-2016 05:13 PM

An elevated anti-nuclear antibody (ANA) titre is suggestive but not necessarily diagnostic of a number of autoimmune diseases. False positives (an elevated titre with no disease) can happen.

Often a titre measurement is followed up by looking at the visual pattern (homogeneous, speckled, etc) of ANA staining in cell nuclei.

This information might help you http://www.racgp.org.au/afp/2013/oct...antibody-test/.

MAT52 06-30-2016 05:40 PM

Quote:

Originally Posted by kiwi33 (Post 1215727)
An elevated anti-nuclear antibody (ANA) titre is suggestive but not necessarily diagnostic of a number of autoimmune diseases. False positives (an elevated titre with no disease) can happen.

Often a titre measurement is followed up by looking at the visual pattern (homogeneous, speckled, etc) of ANA staining in cell nuclei.

This information might help you http://www.racgp.org.au/afp/2013/oct...antibody-test/.

Thanks Kiwi- I only have as much information as I've posted here about my ANA - no breakdown yet.

I'm assuming that it is very significant in my case, given that I've been told by my previous rheumatologists that I can't have a connective tissue disease without it - despite raised inflammatory markers, paired o bands and many symptoms corresponding with connective tissue diseases. Also I have never understood how it is possible that we allow RA to be clinically diagnosed and treated in seronegative form - but not the others? I suspect this is because synovitis and RA erosion show up clearly in imaging so can't be refuted - unlike diseases such as Lupus or Sjogrens which can be much harder to confirm without the autoantibodies.

kiwi33 06-30-2016 11:53 PM

Yes, the specificity of elevated ANA varies a lot as a marker for different autoimmune diseases - it is highest (about 90%) for SLE and lowest (about 40%) for RA - Table 2 of the link above.


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