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Autoimmune Autonomic Ganglionopathy

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Megan17, Apr 9, 2016.

  1. Megan17

    Megan17

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    As I have only had a short crash course in AAG since KangaSue mentioned it to me a couple of weeks ago, I hope someone may be able to shed some light onto the following!

    While reading the AGIDE website particularly the Autoimmune Dysautonomia page there is a list of various tests on offer. Some of these tests are related to Anti Nuclear Neuronal Antibodies (ANNA's) - such as ANN1S, ANN2S and ANN3S.

    Now in my limited research of this topic, ANNA's are not talked about very much, so let me quote something which was on a test I had done in 2008 and again last month - 2016. Most of the tests done at that time (soon after I became quite ill in 2007) were negative, including as I have said before, the ANA's and the Sjögrens SSA/SSB specific antibodies. However something which has always piqued my curiosity was my ANCA's (Anti-Neutrophil Cytoplasmic Antibodies) which were done and I quote from the report:

    "ANCA - Unable to determine the presence of ANCA because of the presence of anti-neutrophil nuclear antibodies (ANNA's). Please see the result for Myeloperoxidase-ANCA (major P-ANCA) and Proteinase 3-ANCA (major C-ANCA antigen).”

    The Myeloperoxidase and the Proteinase ANCA's were both in range at <5 U/mL. (RR <5)

    The latest ANCA done last month - Feb 2016 reported:
    "ANCA (11F) Result: Weakly Positive and Pattern: Atypical".

    Three questions:
    1). has anybody had this type of comment relating to ANNA's on their ANCA reports.
    2). could this veiled ANCA result have anything to do with the ANN1S, ANN2S & ANN3S which are mentioned on the AGIDE Dysautonomia webpage?
    3). something else altogether?

    I hope I have communicated clearly enough what has been puzzling me for a long time!

    Megan
     
    Last edited: Apr 10, 2016
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  2. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    If you have a high titre antinuclear antibody then you have autoantibodies to a nuclear antigen of some sort. This would give staining of neurons too so I am not sure what anti-nucelar neuronal would mean here. It all depends on the technique used. Antibodies to SSA tend to show up as antinuclear, although the SSA (or Ro) complex live in the cytoplasm as well. You would expect to get antinuclear staining on neutrophils so maybe that explains the problem with that test. It looks as if your main ANCA antigen antibodies are negative.

    I rather suspect all the tests are reflecting the Sjogren's associated antibodies. I have never heard of the ANN1s terminology but presumably it is a specific antigen - it would need to be tested for by Western blot or ELISA. It would be possible for one of these to be present as well but I think it unlikely.
     
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  3. kangaSue

    kangaSue Senior Member

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    It's out of my league and I'm not sure if I'm reading it right but I think ANN1S, ANN2S, ANN3S are codes for the various patterns that technician are trained to recognize with indirect immunofluorescence assay (IFA) as a guide to which further tests need to be performed if the pattern isn't totally typical.

    Mayo's AGIDE guide says if IFA (ANN1S) patterns are indeterminate, then paraneoplastic autoantibody Western blot is performed at an additional charge.
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    No idea if this helps but all of these tests: ANN1, 2, 3, etc, were part of the paraneoplastic panel (PAVAL) that I had sent to Mayo. I was negative on all of them but positive on two others.
     
  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    If they are immunofluorescence (IFA) assays then I suspect they would be hard to interpret in the presence of anti-SSA/Ro, like the neutrophil test.
     
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  6. Megan17

    Megan17

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    Thank you Jonathan, KangaSue & Gingergrrl for your responses.

    Jonathan, it is complex and admit most of it is beyond my current understanding. I agree with you that the main ANCA's are neg. It is what is happening behind the scenes of that ANCA test which is a bit puzzling. Yes...and as you say there are a number of unknowns there such as techniques used etc.

    I find first hand experience is a great teacher and in time some of this may make more sense to 'moi' who is Pooh-of-little-brain! (I hope you all know what that means ).

    KangaSue that is an amazing thread with some excellent statements about how Sjögrens may be defined in the future and also the belief by some that AAG is a stand alone diagnosis. Gosh the more I read about AAG the more I see myself in many of the symptom expressions.

    Thanks again folks!
     
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  7. Justin30

    Justin30 Senior Member

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    I had postive ENA panel and will be retesting as the only positive result was the RNP for Mixed connective tissue disease as well as:

    Positive and Pattern: Atypical" ANCA

    I am hoping to see a new Rheumatologist.

    No ANA or RF factors in my book though...
     
  8. Gingergrrl

    Gingergrrl Senior Member

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    @Justin30 To test for mixed or undifferentiated connective tissue disease and these types of auto antibodies, would the best type of doctor to do this be a rheumatologist? Or could a neurologist also do this?
     
  9. Justin30

    Justin30 Senior Member

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    Its actually both as MCTD can affect any part of the body but if you present with Neurological issues than a Neurologist "should" be the one to further pursue the DX in my eyes.

    A recent PR post on SPECT and high quality MRI points to damage in the brain either by encephalitis or SLE (wich is a MCTD).

    I have met 2 Neurologists in my city and if it does not fit within their area of expertise then I believe you are SOL when it comes to getting them to pursue your case.

    By having access to top Universities and institutions in the US I think you are better off. That is if you have good insurance or the money to pay.

    My GP can do ENA Panel but is not trained enough to interpret results.
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    Thanks and right now I am working with a Neuro on these issues and was just curious if a rheummy was more trained re: auto-antibodies vs. a Neuro. I guess it really depends on the individual doctor and their training and interests?

    In 2010, when my arm was injured by Levaquin, I saw three Neuro's (one in hospital and two outpatient) and two of them were mean-spirited and downright cruel and the other was a nice guy but unable to help me. But now I have found a Neuro who I think might be able to help me with these antibodies and seems to have a good grasp of what they mean.

    We traveled six hours each way to a top university which is how I learned that I even have the antibodies. Now I am trying to switch the treatment to local docs. I have a decent ACA insurance plan right now which is covering everything and am trying to figure out how to keep this plan vs. switch to medicare but that is another topic.

    What does ENA panel mean? Disregard this question and I just Googled it and understand what it is. I definitely have never been tested for that before.
     
  11. Justin30

    Justin30 Senior Member

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    Thats good, I would agree....i would stick with the neuro that Understands your tests....

    An ENA panel tests to for AI diseases such as lupus, sjorgensens, MCTD, saracardoises.
     
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