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Autoantibodies against neuronal antigens (weak positive?)

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Aubry, Oct 25, 2018.

  1. Aubry

    Aubry Senior Member

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    My doctor measured specific neuronal autoantibodies. To my surprise one of them (Amphyphysin) came back as weak positive (my interpretation). But the lab says it is not positive:

    "Amphyphysin is not positif, it is below the cutoff level for positivity. The global result is generated by a dedicated sowftware providing quantitative results. The level for positivity was not reached therefore the result is negative."

    My question is what I have to do next? To be honest. I am quit shocked because this antibody is connected to cancer (and AE). Results are uploaded as files here.
     

    Attached Files:

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  2. Lisa108

    Lisa108 Senior Member

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    Re: the RED lab results - are c3 and c4 the so called complement components?
    Do you have results for ANA (antinuclear autoantibodies)?

    And re: Amphyphysin and cancer:
    This autoantibody seems mostly to be associated with the paraneoplastic variant of stiff person syndrome in FEMALE patients. (study here)
    The laboratory of the Charité says, that "in 31-74% of patients with positive Amphyphysin, other onconeurological antibodies (CV2, Hu, Ri) can be found". (my translation, german link here). These are negative in your results.

    Maybe the doc can retest Amphyphysin in a couple of months, just to be sure?

    Edit: wrote 'symptom' instead of 'syndrome'
     
    Last edited: Oct 25, 2018
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  3. Aubry

    Aubry Senior Member

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    Thanks for your response @Lisa108

    Yes these are the complement components.
    I have since 5 months also positive ANA (1:80), ENA and Anti-SSA antibody.

    I seem to have auto-immunity but most doctors I went to (so far) don't seem to add lot of attention to these results... Maybe because my CRP, Reuma tests etc are normal. I also have burning sensations (will test small fiber neuropathy). POTS I don't seem to have (negative Celltrend results) but I still will do a TILT test next week.

    I, personally, think I have mixed auto-immunity in the direction of (neuro-)Sjogren.

    Good idea to retest Amphiphysin
     
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  4. JadeD

    JadeD Senior Member

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    @Aubry - can I check why the dr has decided to check for neuronal autoantibodies as this is not usually routine? On what basis, was it particular symptoms etc?

    I’ve had the C3a and C4a tests done by redlabs and they’re low too. I’m not sure what the significance of this is.
     
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  5. Aubry

    Aubry Senior Member

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    @JadeD I have no idea based on what he checked these autoantibodies. He also measured
    Anticholinesterase receptor AL but that one was negative.
     
  6. JadeD

    JadeD Senior Member

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    Thanks @Aubry, it’s just he hasn’t checked these for me so I was wondering what his criteria are for running these. I also feel like Sjögrens could be a factor, I have super dry eyes on waking, PoTS, deep muscle burning, joint pain recently developed etc. Or is it all just ME?! Sounds like you’re in the same situation. :thumbdown:
     
  7. Aubry

    Aubry Senior Member

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    Ya I assume we have the same doctor... I am in treatment now for almost 5 years (without improvement :( ). I still keep getting gut treatments mainly (pulsed Flagyl now for 6 months already). But I never notice "improvement" it is always bit better during ABX but then again more bad afterwards. I guess he tries to check now other 'rare' stuff such as those neuronal antibodies etc.
     
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  8. JadeD

    JadeD Senior Member

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    Yes we do. I’ve noticed improvements from the antibiotics, was bedridden/wheelchair bound and now not. I think the gut treatments are essential in maybe stopping us getting worse. But I think the inflammation/cytokine production is the main problem as has been explained to me. We have to hold tight for the jak-stat research I think. We’ll get better eventually :hug:
     
  9. Hip

    Hip Senior Member

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    If the lab says your results are negative, how is it that you are overruling them and saying you have a "weak positive"?
     
  10. Aubry

    Aubry Senior Member

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    @Hip Yes this was the part of the blood test I did not understand. On the redlabs they conclude "negative" but on the partial results from neuroimmune it says value 6 (+)-sign, so for me that is weak positive. BUT then I asked Redlabs and they said it is not positive.

    @JadeD Yes I was also more bad first year of illness (mostly bed bound) but nowadays it is not much better. I am not bed bound anymore but still sleep mostly 12hrs/day and lot of sofa/chair time. I also think the gut ABX keep me from getting worse (although I am not sure because I never did couple months of no antibiotics).
    KDM has big hopes on the JAK1 (filgotinib) inhibitor for controlling inflammation (Galapagos NV). It should be on the markt by januari 2020 he said multiple times to different patients. When we are on Filgotinib the inflammation could come down and time to heal can occur. He also talked about using embryonal stem cells for the healing proces.
     
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  11. Hip

    Hip Senior Member

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    Sounds like when people get to the age of 40 but say "I really see myself as a 25 year old"...
     
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  12. Aubry

    Aubry Senior Member

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    @Hip No idea what you exactly mean :D
     
  13. Hip

    Hip Senior Member

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    It means that unless you have technical expertise in interpreting antibody testing results, or have read articles from doctors about interpretation, I am not sure why you would come up with an interpretation of your own.
     
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  14. Aubry

    Aubry Senior Member

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    @Hip Ow indeed :) I was in panic due to the (+) sign
     
  15. Hip

    Hip Senior Member

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    I would not worry about it if the lab says your result is negative (unless someone else provides an expert interpretation to the contrary).
     
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  16. Lisa108

    Lisa108 Senior Member

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    I would add Lupus to the list of suspects. CRP can be low, even during a Lupus flare...
    Hope your doc will find something helpful soon!
     
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  17. kangaSue

    kangaSue Senior Member

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    @Aubry If there's any doubts about the antiamphiphysin antibodies, it would be a good precaution to run some blood through the equivalent of Mayo's DYS1 (Autoimmune Dysautonomia) or PAVAL (Paraneoplastic) panels (both test for the same antibodies found in paraneoplastic syndromes).

    Antiamphiphysin antibodies were first described in patients with paraneoplastic stiff-man syndrome and breast cancer, but studies suggest that they can also occur in patients with other tumors and neurological disorders.

    There's also a small chance that a paraneoplastic syndrome can occur along with the other conditions that can be indicated in testing positive to ANA, ENA and Anti-SSA antibody (any of the connective tissue disorders). The Mayo panels also test for a number of other neurological or muscular conditions that can occur here.
     
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  18. pibee

    pibee Senior Member

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    ughh, why then are we all on this forum exactly, if we're not constantly questioning expertise of .... basically every doctor we ever met?
    Sorry, but your comment seems just ridiculous and doesn't add value to the thread. I had to comment.



    Especially regarding this serious lab test I don't see a problem with his interpretations or questionings - better safe, than sorry.


    If KDM is to be trusted, and laboratory related to him, he wouldnt be testing antineuronal antibodies only after 5 year of treating someone completely unsuccessfully....


    i was also told Sjogrens weak positive SS-A is not relevant... by almost any doctor I came accross... except, those that actually are familiar with POTS/dysautonomia link to Sjogren's.
     
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  19. Hip

    Hip Senior Member

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    If you are going to question the opinion or views of a medical professional or lab, then you need to do it from a position of greater knowledge, such as citing a study or the view of an expert. Otherwise what are you basing it on?

    @Aubry does not appear to have any scientific basis for overruling the interpretation of the lab. He just seemed to randomly decide that he was "weakly positive" for no real reason, and then started worrying about the implications of his own conclusions.

    I do not think it is "ridiculous" for me suggest that people are better basing their conclusions on science and expert knowledge.
     
    Last edited: Oct 25, 2018
  20. pibee

    pibee Senior Member

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    @Hip

    I think the guy actually opened this thread to gather more knowledge /links to scientific data etc., he was obviously questioning his own interpretation - thus this thread.

    I am not sure what's the problem here.

    Are you actually suggesting something applicable to the problem, in this case, like some other posters, to repeat the test or is your advice simply forget this result and never reconsider?
     

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