The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Cardiology: What Testing May Be Relevant?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by EsetIsadore, Jan 1, 2018.

  1. EsetIsadore

    EsetIsadore

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    Recently twinned Head & Neck MRAs (to rule out stroke pursuant to repeat Hemiplegic Migraines) revealed the incidental finding of severe left subclavian stenosis. I will need to head to a cardiologist for further evaluation, since I have advanced neurological symptoms that may or may not be partially due to “Subclavian Steal”.

    I live in Chicago. We have no ME/CFS experts here. I’ve attended the Stanford ME/CFS Clinic and am a patient of Dr. Bonilla. No one has recommended any formal testing related to cardiology or to demonstrate my exertional and post-exertional symptoms.

    At the urging of my doctor and loved ones, I will soon begin the process of applying for SSDI. To bolster that and to help me medically, what cardiology-related testing is often (or sometimes) recommended for patients with severe SEID/ME?
     
  2. jpcv

    jpcv Senior Member

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    SE coast, Brazil
    It depends on your symptoms, I would start with a 24 hour Holter.
    Dr Lerner found significant abnormalities I'm many patients. Then a ECO .
    If abnormalities are found I would go for a MUGA scan .
    If you havery some kind of orthosthatic intolerance, go for a Tilt Test.
     
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  3. EsetIsadore

    EsetIsadore

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    Thanks @jpcv. I’ll be doing Autonomic Testing, tilt table included, on 1/10. I’m unfamiliar with MUGA scans; I’ll go look them up.
     
  4. EsetIsadore

    EsetIsadore

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    What about the two-day cardiopulmonary exercise test? I need to be super frank that I cannot imagine how I’d even begin that, much less survive it if I could, given that I now use a walker or wheelchair in the rare times that I leave my bed...but I’m interested in the experiences of my peers!

    http://me-pedia.org/wiki/Two-day_cardiopulmonary_exercise_testing
     
  5. Silencio

    Silencio Senior Member

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    Don’t do the 2 day CPET if you are so severe. It’s really risky. I did it and became bedridden for 2 years. I have never regained the function I had before taking it and I don’t feel I was warned sufficiently about the risks.
    This website has a lot of stories about the diff tests you can do. These are a recount of the ones I did:
    https://howtogeton.wordpress.com/2017/08/23/iris-gets-tested/

    I think for SSDI, cognitive testing and tilt testing would be the best for you. The best thing you can have too is a history of doctors visits and letters. They will probably deny you, and you will probably appeal, and it will take at least 2 years, but once you get a hearing, some of the judges are very fair. In my case the judge gave no weight to the opinion of the social security doctors who said I was not disabled, when reviewed in context of my history of treating doctors saying I was disabled.
     
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  6. Dechi

    Dechi Senior Member

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    This test is mainly used for insurance/disability purposes. I am moderate and it took me 6-8 weeks to recover. I don’t recommend it to anyone in the severe range.
     
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  7. EsetIsadore

    EsetIsadore

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    Thank you so much, @Silencio and @Dechi! I really appreciate you both weighing in with hard-won insight, born of personal experience.
     
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  8. keenly

    keenly Senior Member

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    UK
    3D echo is the best. This is what Cheney used.
     
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  9. EsetIsadore

    EsetIsadore

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    I didn’t know there was such a thing!
     
  10. KeepTrying

    KeepTrying

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    I did a single cardiopulmonary exercise test, on a bike with Dr. Lapp in Charlotte. (So not two-day.) It demonstrated the very low anaerobic threshold we have and signs of autonomic dysfunction (lower temp during exercise is one finding I recall). I think this test turned out to be important evidence in my disability application.
     
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