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did anybody prove their ans is not working properly?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Johnskip, Apr 13, 2017.

  1. Johnskip

    Johnskip Senior Member

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    my autonomic nervous system is damaged I think I can prove this by testing I do not sweat hardly at all i used to sweat continuously I believe this is the cause of my illness 100 percent
     
    lauluce likes this.
  2. Sushi

    Sushi Senior Member Albuquerque

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    Yes, my dysautonomia was proved with a tilt table test. You can also get sweating tests in some medical centers.
     
    ahimsa and Never Give Up like this.
  3. Johnskip

    Johnskip Senior Member

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    That's pots isn't it?
     
  4. Sushi

    Sushi Senior Member Albuquerque

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    No, it is any type of autonomic dysfunction--including problems with sweating.
     
  5. Johnskip

    Johnskip Senior Member

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    is this the cause of your cfs diagnosis?
     
  6. Johnskip

    Johnskip Senior Member

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    How do we heal the autonomic nervous system that is the important question?
     
  7. Sushi

    Sushi Senior Member Albuquerque

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    The results tilt table test were the reason for my dysautonomia diagnosis--not for my ME/CFS diagnosis. Dysautonomia is often found in ME/CFS patients but isn't enough for a diagnosis.
     
  8. Sushi

    Sushi Senior Member Albuquerque

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    That depends on the cause of its dysfunction.
     
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  9. Johnskip

    Johnskip Senior Member

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    let's be honest here there is plenty of fatal diseases that affect the autonomic nervous system and they have no cure just like this diagnosis
     
  10. Mary

    Mary Senior Member

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    I believe lack of sweating is very common in ME/CFS. I live where it routinely gets over 100 in the summer and I barely sweat at all. I also have low NK cell function, sleep difficulties and PEM - I'm sure there is one root cause and that's what Dr. Ron Davis et al. are trying to find.
     
    JaimeS likes this.
  11. halcyon

    halcyon Senior Member

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    Yes, this can be proven quite easily with TST and QSART testing. If you're going to go this route I'd find somewhere that does full autonomic testing; the former two tests mentioned, plus tilt table and valsava/deep breathing. I've had this and have signs of neuropathy on sympathetic ANS nerves. It's not the cause of the disease, but it's definitely part of it for some people.
     
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  12. JaimeS

    JaimeS Senior Member

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    Yup, I got an autonomic panel; none of the results were normal, as I recall. Included TTT, Valsalva, sweat pressor test, etc.
     
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  13. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Generally speaking there's indeed a situation of a diagnosis of ME CFS being a disease lottery that we are entered entered into without your consent that spans from recoverable to fatal, if we're discussing Autonomic Dysfunction as the primary disabling factor.

    I'm thinking along the lines of if we are 'lucky' or unlucky to developing one of the following forms of dysautonomia:

    1)Autonomic Dysfunction that fades over a few years. (What we are told in official literature is the most common).
    2)Autonomic Dysfunction of chronic idiopathic form (What seems to be more realistic).
    3)Autoimmune Autonomic Dysfunction (We are learning from POTS research and patients on this forum testing).
    4)Autoimmune Neuropathy (Some long term of us have this).
    5)Autonomic failure.

    For arguments sake, lets presume ME CFS are generally in groups 1-3 above, yet with such a vague diagnosis and very few of us having the test people have correctly mentioned in their replies here, few to none of us truly know what fate has in store for us regarding what the disease will do to us long term so it's hard to conclude other than with Autonomic Failure how our lives are going to pan out in the current situation of zero treatment options.

    Personally I'd not just focus on what form of dysautonomia one develops, but other factors that will, combined, drag us down into the mire, should they develop in addition to dysautonomia!

    These would in my view include, primarily:

    1) Length of diease presentation.

    E.g. The longer one is ill, the more potential damage you'll get to your brain and other organs. As we age, our body fails anyway, and if we have high levels of oxidative stress this will just attentuate the inevitable ageing process. Someone sick with severe ME for 40 years is obviously going to have an unfavourable outcome should a 'cure' be touted in the next few years, compared to someone sick for 2 years, if a 'treatment' is eventually proven in rigorous drug trials.

    2) Severity of chronic disease:
    It would then be logical to consider the following ME CFS presentations

    Mild
    Moderate
    Moderate-Severe
    Severe
    Severe-Very Severe
    Progressive

    3) Then factor in various co-morbidities on top of your ME CFS that may occur in some. These are off the top of my head, I've bound to have missed many out.

    Established Autoimmune disorders (Sjogren's, Lupus, MS, rare autoimmune neuro psych) and related Connective
    tissue diseases.
    Neuropsychiatric disorders. (Possible development of major depression, bipolar, schizophrenia)
    Arthritis and relate spinal damage to nerves.
    Cancer running in families or from lifestyle (smoking), or possible ME CFS pathogenesis causes.
    Heart Disease, ditto above.
    High blood pressure - stroke risk at the least.
    Allergies and severity of. (If you have anaphalaxis, things aren't easy)
    Asthma, ditto above.
    Epilepsy and Seizures (luck how your brain reacts to these events)
    Cardiac Arrythmia disorders without cardiac disease
    Morbid obesity (big strain on an already exhausted heart)
    Lipid disorders associated to CVD and stroke risk
    Kidney/Liver disease (luck how your organs last out with inflammation/infections)
    Endocrine disorders such as:
    Thyroid (undiagnosed thyroid ravages the body). Who here's checked their TSH receptor antibodies?
    Diabetes (complications can and do arise) many aren't even aware they have diabetes.
    Pituitary diseases (GH deficiency increases morbidity) rare than ME CFS patients have GH stim test.
    Cortisol failure (Untreated Addison's is fatal) undiagnosed patients find out when they go into shock.

    So until we've considered all the above as patients (and many more factors not listed), it would be hard to accurately determine if as a patient you're dysautonomia will fade, stay chronic and be treated in time with medications new to the market, or sadly, only get progressively worse.

    It's depressing and even sad, but unfortunately chronic ill health does this to the human body. This being, enter you into the aforementioned lottery. At this point in time, we can only just cross our fingers and hope for the best - hardly an optimal way to manage a disease, but this is the card the CDC dealt us in 1988 and beyond.

    Someone had the dumb idea to include all subsets of 'CFS', as CFS (instead of naming subsets) and the name doesn't help either. The reality is, we suffer the consequences of this decision and all future decisions made since 'CFS' was created.

    That's how I see the situation, as someone who was in your shoes as a teenager. I would argue it's best to be informed rather than clueless. I would have enjoyed what function I had more if I'd know the truth.

    At least this forum allows the truth: people's individual experiences. What I've learnt is our experiences, no matter how diverse , certainly do not fit into the limited description of 'CFS' at all, but moreover we're all suffering from some form of chronic disease that either involves the ANS moderately, or profoundly.
     
    Izola, Sancar, Countrygirl and 7 others like this.
  14. JaimeS

    JaimeS Senior Member

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    I just complimented your thoroughness on another thread, @Research 1st . And here you are at it again! ;) :D
     
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  15. kangaSue

    kangaSue Senior Member

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    As part of an Autonomic Function Test Panel in Australia, they also add a Heart Rate Variability to Deep Breathing Test to this list as a test of your cardiovagal function.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3543903/

    Abnormal results (in QSART and TST= sudomotor dysfunction) in all will get you a diagnosis of Autonomic Neuropathy (the same as found in Diabetes), then you need to look at doing antibody testing to see if it's autoimmune (which can have lethal repercussions) or idiopathic.
     
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  16. kangaSue

    kangaSue Senior Member

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    As a starting point, you can do the Poor Man's Tilt Table Test at home if you have access to a b.p. monitor.
    http://www.oiresource.com/oitest.htm
     
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  17. purrsian

    purrsian Senior Member

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    I have dysautonomia and POTS, but quite the opposite of what you guys are discussing - I sweat very easily. Although it is not what I feel is "normal" sweating that you feel after exercise or during hot temperatures. I feel it literally all over and evenly distributed, usually my skin is cold to touch and I feel very clammy. Occurs randomly, not usually associated with activity or temperature. I also experience an exaggerated startle reflex and poor thermoregulation, which are related to the ANS.

    I found other dysautonomia symptoms begin around the same time as my POTS began. I had a positive tilt table test for POTS, but the test also produced the abnormal sweating feeling too.

    However, I don't believe this to be the cause of my overall illness, as I had CFS for 8-9 years prior to dysautonomia symptoms. But if all of your symptoms began together, it's possible it could be the root cause for you. The ANS controls SO much that when it's dysfunctional, a lot goes wrong!

    Have you had any autonomic testing done kangasue? And if so what and where? I have a neurologist appointment in Bris in Oct for dysautonomia/POTS and wondering what kinds of autonomic testing is possible for us. Not sure what to ask for.
     
    Sancar likes this.
  18. JaimeS

    JaimeS Senior Member

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    Very interesting, @kangaSue ! Is it antiganglionic acetylcholine receptor (AChR) antibody they test for?
     
  19. halcyon

    halcyon Senior Member

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    It's possible you have hyperadrenergic POTS based on this.

    Certain types of neuropathies can also cause your sweat glands to produce more sweat than normal. This is part of what the QSART test measures.
     
  20. Johnskip

    Johnskip Senior Member

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    If you don't have pure autonomic failure 99 percent of doctors will not even entertain the idea of autonomic dysfunction me personally I know my ans is damaged and why waste my time proving it they can't treat it anyway people had this for thousands and thousands of years scientists can't touch the ans and the ans is the most important system in your health that's what they have to fix to cure real cfs/me
     

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