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Autonomic testing anyone? Mine showed dysfunction - POTS, PPS

Discussion in 'General ME/CFS Discussion' started by Pyr2, Nov 14, 2015.

  1. Pyr2

    Pyr2

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    Hi everyone. 47 yr old female - I have been in a long slow crash for the past two years with mainly neuro symptoms. Have reactivated EBV and Lyme in the past. I have super low c3 and c4 complements but so far no rheumy is diagnosing any autoimmune disease. I also have a history of antcardiolipin antibodies and now just found out I have antithyrogloublin antibodies.

    But this post is about the autonomic dysfunction. I just had the ANSAR. Here are my results - can anyone help interpret- my neuro is foisting me off to an autonomic dr who I dont see for months....

    -The resulting sympathetic to parasympathetic ratio was abnormal with a marked adrenergic predominance
    -This patient has a paradoxical parasympathetic response to the sympathetic challenges of Valsalva and Standing
    -Orthostasis and postural orthostatic tachycardia are indicated by this inappropriately decreased sympathetic response to standing as well as reflex tachycardia
    -Patchy sweat test suggestive of small fiber axonal neuropathy

    The report recommends treatment with centrally acting beta blockers such as Sectral or Coreg

    Help!
     
  2. sillysocks84

    sillysocks84 Senior Member

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    What is the ANSAR? Thank you, I was only aware of TTT. Then again I am from the midwest, we aren't up to date :-(
     
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  3. Pyr2

    Pyr2

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    Its a battery of tests sort of like the TTT. It measures blood pressure standing, deep breathing and valsalva breathing. Then you do the QSART which tests for sweating.
     
  4. leela

    leela Slow But Hopeful

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    @Pyr2 , what kind of doctor did/ordered the ANSAR? I'm wondering if it's something I could ask my new neurologist for, or even my PCP.
     
  5. leela

    leela Slow But Hopeful

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    What I understand this to mean (I am not a professional) is that
    -the ratio of flight/flight to rest/digest is high, so you tend towards fight/flight
    -however when you change pressure in your head (valsava maneuver) or stand, there is an unexpected decrease in sympathetic (fight/flight) response
    -which causes OI symptoms including racing heart
    -sweat pattern indicates neuro-sensory problems in your skin
     
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  6. Pyr2

    Pyr2

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    Thanks Leela- I had it done through my neurologist. He sent me to a local hosptal that did it. It only took 1.5. hours. But then after that he sort of dropped me - he was like Im a neuromuscular guy not an autonomic specialist. So I have an apptmt with an autonomic specialist - not until March! So in the meantime I made an apptmt with an autonomic cardiologist who is known for his work on POTS, so he should at least get the ball rolling with with this.

    Are you having issues?
     
    leela likes this.
  7. sillysocks84

    sillysocks84 Senior Member

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    Where did you have testing?
     
  8. Pyr2

    Pyr2

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    I live in NJ It was done at JFK neuroscience medical center
     
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  9. leela

    leela Slow But Hopeful

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    Thank you, Pyr2, I have a pending (months away) new neuro appointment, and while I've had dysautonomia of CNS diagnosed, and am POTSy,
    I've never had proper testing. I'd never heard of that test, and since the new doc is at a neuroscience center, now I know to ask for it thanks to you! :)
     
  10. kangaSue

    kangaSue Senior Member

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    I can suggest a possible diagnosis. This is said to be rare but it's not something commonly tested for on a routine basis so it's hard to say if that's the case or not but it's not unheard of as occurring in some with ME/CFS

    Anyway, If the symptoms involves problems with some or all of the following ; orthostatic hypotension or POTS, gastrointestinal dysmotility, anhidrosis, bladder dysfunction, sicca symptoms, impaired pupillary light reflex, then it might be considered to be due to Autoimmune Autonomic Ganglionopathy (AAG).

    AAG is often only thought of as involving a rapid onset but there is now a case for it to be also a slowly progressive disorder as a restricted form of AAG where a low antibody count to a3-nAChR is found and can also occur as seronegative.

    http://www.hindawi.com/journals/ad/2013/549465/
    http://archneur.jamanetwork.com/article.aspx?articleid=785281
     
  11. Pyr2

    Pyr2

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    I was tested for achetolcholine receptive binder as part of neoplastic panel- I wonder if this is the same thing. I will ask when I go for my apptmt in December. Thanks!
     
  12. kangaSue

    kangaSue Senior Member

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    I'm not sure but I think acetylcholine receptor binder test is for antibodies to the alpha1 nicotonic receptor.

    I don't think the test to determine AAG is done as a matter of course with the (para)neoplastic panel. You specifically need the alpha3 nicotonic acetylcholine receptor antibody test for AAG, the antibodies to a3-nAChR are present in only about 50% of cases though.

    It's a bit confusing because the correct test has different names at different centres. Mayo clinic list it as AChR Ganglionic Neuronal Antibody test under their Cation Channel Antibody heading
    http://www.mayomedicallaboratories.com/test-catalog/Clinical and Interpretive/89886
     
  13. Pyr2

    Pyr2

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    Kanga- I checked. I did have the ACHR Ganglionic Neuronal Antibody test. Negative.
     
  14. kangaSue

    kangaSue Senior Member

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    Negative is not necessarily a helpful result for AAG as 50% of cases are seronegative to the ACHR Ganglionic Neuronal Antibody test.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2837591/

    They sometimes have to make a judgement call where they also find a high degree of other autonomic systems dysfunction on an Autonomic Function Test panel or they find antibodies to the other cation channels listed in the Mayo panel, N-type or P/Q-type calcium channel or Neuronal VGKC.

    Were you also tested for those?
     
  15. Gingergrrl

    Gingergrrl Senior Member

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    Is this the same Mayo Panel called "PAVAL" or a different one?

    Also @Pyr2, were you ever able to get more info and did you have your appt in March yet? I am in a similar position to you and trying to gather info about all this stuff which is very confusing!
     
  16. Pyr2

    Pyr2

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    No my apptmt with autonomic neuro is actually this week. Last month though I was evaluated by a movement disorder specialist. I am having lots of burning aching all over my body especially my ankles and calves and lots of cramping in weird places like my throat etc. The concern is a neurodegenerative disease called multiple system atrophy. He has over 30 yrs experience but I felt he was very dismissive of me (he said no I don't have it). I wish I could be more confident because I am declining daily. Lets see what the auto guy says.
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    @Pyr2 Best wishes with the autonomic neuro. Where are you seeing him (sorry if I missed this part.) Am sorry that the prior doc was dismissive but sadly it is the norm vs. the exception. Please keep us posted!
     
  18. kangaSue

    kangaSue Senior Member

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    That's a different panel to what I had seen for paraneoplastic issues but the [GANG AChR Ganglionic Neuronal Ab, S] is the test I am referring to, same as is done with the AGIDE panel which checks for either Autoimmune Autonomic Ganglionopathy (which used used to be generically called Autoimmune Autonomic Neuropathy) or Autoimmune Gastrointestinal Dysmotility (restricted form of AAG).
    http://www.mayomedicallaboratories.com/test-catalog/Overview/89886
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    @kangaSue It looks like a lot of these panels from Mayo have different names but overlap in which tests they provide.You seem extremely knowledgeable in this area (much more than me!) and was wondering if it would be okay if I sent you a PM tomorrow to ask you a few questions?
     
  20. kangaSue

    kangaSue Senior Member

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    @Gingergrrl, I'm fine with that.
     

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