Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Gold standard testing for dysautonomia / POTS / OI

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Thinktank, Apr 19, 2018.

  1. Thinktank

    Thinktank Senior Member

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    I will soon see a neurologist with knowledge of dysautonomia. A tilt table test will be performed but i find that a bit shortcoming for a proper diagnosis because there are several subtypes and causes for this disease.

    What is the absolute golden standard to diagnose the type of dysautonomia besides positive or negative TTT?
    Like measuring noradrenaline pre and post TTT? Measurement of other catecholamines? Measurement of blood volume?

    Are there any guidelines?
    I'm bored of guessing and want to do a complete diagnostic workup.

    My symptoms:
    - Feeling sick, restless and even more fatigued when standing for a longer period of time. When i lay down i get back to my ME-self.
    - Severe heat intolerance, this is the biggest trigger. It's been quite hot today so i'm floored, my veins are badly dilated and hurt. Because of this i can't take a warm bath or shower.
    - Heart rate jumps 30+ BPM from a horizontal to vertical position.
    - I get breathing problems, like i have to force myself to breathe when the dysautonomia is at its worst.

    I'm so sick of this, i wished it was winter already!

    Thanks for any advice.
     
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  2. Diwi9

    Diwi9 Senior Member

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    This is a video with Dr. Brent Goodman, he is a neurologist with Mayo in Scottsdale and a clinical specialist in POTS.



    Based on the talk, it looks like he is using the TTT with all sorts of measures. It would be interesting to see copies of the slides he has up as I can't make heads or tails of them from the video, other than there is a lot of data their form of the TTT is recording.
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    I don't know the answer but will be folllowing this thread and wish you the best for your appt and TTT. None of my autonomic testing ended up being useful (beyond absolute confirmation that I have POTS which we already knew). My QSART test was abnormal, but zero recommendations were given for that, and I was not even able to get a copy of the results.

    The most useful thing (for me) was the autoantibody testing which led to IVIG and later Rituximab. But the TTT did not lead to anything useful in my case. I was already taking Atenolol and Midodrine for POTS and this did not change. I don't think the science is there yet to identify all of the different sub-groups within POTS (except maybe at a place like Vanderbilt)?
     
  4. Thinktank

    Thinktank Senior Member

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    I will definetaly watch that video. Autoimmunity & mastcell activation in dysautonomia, that's exactly what i have.
     
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  5. Thinktank

    Thinktank Senior Member

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    Thank you, i hope the tests will confirm what i've already know for years.
    There's little that can be done in terms of treatment, but the reason i want to become officially diagnosed is the fact that doctors will take my complaints more seriously in the future and not blame it on anxiety or some other psychosomatic nonense, the diagnosis will also help to apply for disability if i ever need it.

    By autoantibody you mean the panel from Scheibenbogen?
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    That makes perfect sense (both re: being taken more seriously and for a potential future disability claim).

    I actually meant some blood work for autoimmune panels that were sent to Mayo Clinic but the Cell Trend tests (that I did later on my own) were very helpful, too.
     
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  7. Learner1

    Learner1 Forum Support Assistant

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    I agree with Gingergrrl. I had these tests done:

    https://www.neuroassociates.us/autonomic-test-preparations.html

    My results weren't spectacularly weird, but the doctor definitely thought I had a problem as I passed out on the tilt table test and prescribed propranolol and Mestinon which have helped.

    I tested positive for the Cell Trend antibodies which was most helpful. My ME /CFS doc put me on a similar regimen to what's in the attached case study. While it hasn't done much for my MCAS, my POTS is 65% better.
     

    Attached Files:

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  8. halcyon

    halcyon Senior Member

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    In the US, the Mayo Clinic has developed a gold standard battery for autonomic testing. This procedure is also followed by other labs such as the neurodiagnostics lab at Stanford. This includes:

    • EKG and beat to beat blood pressure monitoring during the entire battery of tests
    • Two rounds of Valsalva
    • Two rounds of deep respiration (6 per minute)
    • Head up tilt
    • QSART and/or TST to assess sweating function
    There is a published paper that describes this in depth but I can’t find the exact one I’m thinking of. This paper has a decent enough description of it.
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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    Although the testing itself was excellent, I had a horrible experience at Stanford Autonomic Clinic (as you know)! Not only did they tell me that they accepted my insurance plan but later denied it and said they did not accept it, they never released the results of my autonomic testing to me or my doctor.

    They did not reply to my questions (or my referring doctor's questions) and ultimately labeled my case as "psychosomatic" in spite of the one write-up they sent me confirming that I had "Significant POTS" with my HR going up 48 bpm as soon as they tilted the table, "Abnormal sweat response on QSART w/long branch neuropathy to the feet", abnormal auto-antibodies on paraneoplastic panel, and abnormalities on follow-up EMG, etc.

    In good faith I cannot recommend this testing at Stanford, although others may have had a better experience than I did, and I have nothing against any other part of Stanford and had an excellent experience at their pulmonary clinic and their lung cat scan machine was top of the line.
     
  10. kangaSue

    kangaSue Senior Member

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    A lot of centres list doing only a TTT, Valsalva Maneuver and QSART as their autonomic function test panel but that's missing one of the better measures for detecting cardiovagal dysfunction in a Heart Rate Variability to Deep Breathing Test.

    A more comprehensive panel would include all the tests from Table 2 in this paper;
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3543903/

    You can test at home for free to get a basic idea of autonomic function in doing the Poor Man's Tilit Table Test and Skin Wrinkling Test, the latter as a measure of Small Fibre Neuropathy.
    http://www.oiresource.com/oitest.htm
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2892617/

     
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  11. ryan31337

    ryan31337 Senior Member

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    Not sure if he was working from specific guidelines but my electrophysiologist's protocol was:

    12 Lead ECG
    Echocardiogram
    7-day holter monitor
    24hr BP monitor
    Tilt Table Test with beat-to-beat monitoring (AM, before fluids/food)
    24hr urine collection for volume & sodium
    Cardiopulmonary Exercise Test

    The urine collection was a poor man's blood volume test & reference for salt intake.

    An OI-literate endocrinologist colleague also ran a battery of blood tests, with plasma aldosterone & renin measurements most related to OI I believe.

    There is plenty more that could be done but I imagine either investigatory limitations and/or treatment limitations were in effect as this was all done on NHS. I think unless you have a very significant symptom leaning that demands treatment most doctors will assume that confirming related issues like small fibre neuropathy, low blood volume etc. are not going to be helpful - unless you are clearly very broken in an identifiable way you'll just get the same basic POTS advice & treatment.
     
  12. MartinK

    MartinK

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    Thanks @Learner1 with tip on Cell Trend!
    But, is this test good also for me? Because, I thinks, my OI is little bit different than POTS.

    When I stay, my heart rate is the same I feel, no problem with this, my problem is - my muscles, legs and back are really painful, when I static staying or sitting - I have a kyphosis on my back, but this OI came with my CFS from day to day...I dont know, whether it can be called "POTS"

    KDM says, its from Lyme, but I'd rather know it more accurately. Is Cell Trend good in my cause?

    I can not tell if symptoms are getting worse as my muscles drop, but it seems like yes...
     
  13. Learner1

    Learner1 Forum Support Assistant

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    Kyphosis seems to be a different problem... From the Mayo website - do you have any of these problems?
    I'm not a doctor, but there seem to be a variety of presentations of POTS and orthostatic intolerance symptoms, including change in heart rate, blood pressure, dizziness, crashing, hypoperfusion in the brain. Here is a description from my doctor's website:

    You could have physical tests like this:

    https://www.neuroassociates.us/autonomic-test-preparations.html

    If the tests or your symptoms indicate you have these issues, then the Cell Trend test might show the autoimmune cause, which could lead to treatment. See the attached.

    Viruses, like EBV and other herpes family viruses and bacterial infections, like chlamydia pneumoniae can trigger autoimmune POTS. There are other antibodies, too that might be involved that you could be tested for.
    My symptoms have greatly improved with IVIG, Mestinon, and propranolol and we are considering other treatments as well.

    Best wishes...
     

    Attached Files:

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  14. lafarfelue

    lafarfelue Senior Member

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    @MartinK i have POTS. Before I was diagnosed and started taking propranolol to help with the symptoms, I had severe pain in my feet and lower legs. This dissipated significantly as soon as I started on Propranolol (not saying that this applies to anyone else, of course).

    Despite this outcome, I still wonder if there's some kind of small fibre neuropathy at play, as I've had serious skin sensitivity to pain and high levels of external (skin/non-structural) foot pain my entire life.
     
  15. Learner1

    Learner1 Forum Support Assistant

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    Could it be from mitochondrial dysfunction?
     
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  16. lafarfelue

    lafarfelue Senior Member

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    It sure could be. I (and my Mum) have a few things that correlate with possible mito issues. @BeautifulDay's posts and knowledge on this has opened up a whole new set of doors for me (thank you @BeautifulDay for sharing so much, so willingly and openly with the forums!)

    I've ordered a 23andMe kit so should hopefully have some answers about some mito stuff in a couple of months (post test completion & running results through ENLIS, Promethase etc)! I hope to post more, separately, down the track.

    Thanks for all you've shared too, @Learner1. i value your knowledge, thoughts and input.

    *Edited to correct misspelling*
     
    Last edited: Apr 23, 2018
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  17. MartinK

    MartinK

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    Hey @Learner1 thanks a lot! you are awesome!

    Tomorrow I will go to EMG test to a good local neurologist - I'll try to tell him about Propranolol and Mestinom - great idea and good to try it for know more!
    HBOT really helps me in last days with many things, but OI is still really crazy.

    And yes, I have a Scheuermann's kyphosis ...big "S" on my back - maybe it would be good to do it magnetic resonance to exclude squeezed nerves or poor blood circulation...

    if there is money, I will definitely try Cell Trend for sure.
     
  18. Gingergrrl

    Gingergrrl Senior Member

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    I was curious (if you know yet) what other treatments you might be considering? Like you, I have had great improvement from IVIG and Atenolol (different med but still a BB) although I had horrible reaction to Mestinon in 2014.
     
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  19. Learner1

    Learner1 Forum Support Assistant

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    Rituximab, stem cell transplant, Gleevec, and treatment for secondary mitochondrial dysfunction.

    Maybe you'd do better with Mestinon now? Sounds like your biochemistry is different than it was then.
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    Wow, I didn't know you were thinking about a stem cell transplant! Where would you do it (if you did it, I mean)?

    If you are seriously considering Rituximab though, I am happy to answer any questions about my experience and my next dose (#5) is in about nine days.

    I'd be very hesitant to try Mestinon again and (our) doctor did not think it would be safe for me to try it again. I got respiratory depression (at the time) from only 1/8th of a pill. I am doing well with my current regime and not touching anything right now (even though I ultimately plan to slowly taper off Cortef in the future).
     
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