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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Echocardiogram - Relevance for ME/CFS?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Old Bones, Nov 7, 2016.

  1. Old Bones

    Old Bones Senior Member

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    I'll be having an echocardiogram (heart ultrasound) tomorrow. I'm not sure why -- just that it was required to be done before seeing a connective tissue disorders specialist. I believe my internist wants me evaluated for Ehlers-Danlos Syndrome.

    Just wondering . . . Do echocardiograms have any diagnostic relevance for ME/CFS? And if so, does the cardiologist who does the evaluation need to know in advance to look for anything particular, beyond what they would normally look for in this test?
     
    erin likes this.
  2. erin

    erin Senior Member

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    @Old Bones I don't know any answers to your questions. I was searching the echocardiogram well actually a typical Cardio exam is like. I have cardio appointment tomorrow. I had 2 or 3 in the past but I can't remember what was the exam like.

    I found a link regarding this http://www.forbes.com/sites/daviddi...ou-should-know-about-your-heart/#39bcfedaa9c3


    if you don't want to read the whole article, the below paragraph from the article might help.

    "The first test I underwent was an EKG (electrocardiogram), which has been the front line test of cardiac diagnostics for many years. It’s still an excellent test for detecting heart-function irregularities by tracking the electrical activity of the heart (which is translated into a line that spikes and dips across the EKG monitor). But it can’t delve deeper into what is causing the irregularities. If something odd shows up, your doctor will likely refer you to a cardiologist for further testing."

    Good luck with the test.
     
    Old Bones likes this.
  3. TiredSam

    TiredSam The wise nematode hibernates

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    I had an echocardiogram to exclude heart problems before I got my ME diagnosis, so for me the diagnostic relevance was exclusionary. The cardiologist needs to know that after the ECG, saying "right then, let's get you on the exercise bike" is inappropriate for ME patients. You might find it helpful to have something in writing from an authoratitive source that they'll respect confirming that ME patients don't do exercise bikes.
     
  4. Old Bones

    Old Bones Senior Member

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    A very good suggestion, @TiredSam . Thanks. I had already called the diagnostic center to specifically ask if the test they had me scheduled for involved a treadmill test. They said no, it would be done lying down. But, I hadn't considered the possibility of having an additional unplanned test immediately after the echo. I'll definitely go prepared with the authoritative document you recommend.

    I've had two treadmill tests post-ME. The first one resulted in significant PEM. That evening, a few hours later, I couldn't drive without supporting my arms in my lap. By the following morning, I had to rest three times while brushing my teeth. My arms were like limp noodles. It took about four days before I started to recover. In contrast, I was hospitalized and in bed for 4 1/2 days prior to the second test. I experienced no PEM, and have since read that complete rest prior to such tests is very helpful for ME patients.
     
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  5. Sushi

    Sushi Senior Member Albuquerque

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    It sounds like they have scheduled you for a nuclear medicine "stress test." Sometimes they do follow the lying down part with a treadmill, but sometimes not. My cardio wanted me to do a nuclear medicine stress test (because I have Afib and she wanted to see how the heart was performing under medication for Afib), but....I had done nuclear medicine stress tests in the past and felt really awful afterwards so decided to try an ordinary EKG with treadmill test. I couldn't finish it and did get PEM but at least I didn't get injected with the nuclear med drug that bothered me in the past.

    I'm not sure what the cardio will say on the next appt. Hopefully, she got enough data. Otherwise, I may have to do a nuclear med test (without treadmill.)
     
    Old Bones likes this.
  6. kangaSue

    kangaSue Senior Member

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    An echocardiogram is a passive ultrasound test of cardiac function requiring no exercise component. A stress echocardiogram is first doing the passive ultrasound then doing the the treadmill or bike exercise then quickly laid back down for another ultrasound for a comparison of effect on heart before and after exercise.
     
    Art Vandelay, Old Bones and justy like this.
  7. Skippa

    Skippa Anti-BS

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    Dunno, but I can share that:

    A) my EKG shows an anomoly that can't be explained

    B) my ECHO shows TWO leaky heart valves.

    Quote "it's nothing to worry about unless I become symptomatic"

    ERM HELLO!?! CFS and POTS type symptoms aren't enough to be "symptomatic" apparently.
     
  8. justy

    justy Donate Advocate Demonstrate

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    If they are looking into EDS then they may well be looking for a Mitral Valve Prolapse = a lot of us with EDS have this. It can be a very mild condition, and is associated with connective tissue disorders. Mine was missed at my NHS cardio apt, but my M.E Dr picked it up. I have low grade regurgitation with mine so have to be checked once a year.

    Good luck and hope this helps.
     
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  9. justy

    justy Donate Advocate Demonstrate

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    My MVP was dx by my M.E Dr abroad. When I went home and asked my GP for an echo to confirm it and have it on my NHS medical notes he said 'we don't bother about that unless you have symptoms' I looked him straight in the eye and told him I DID have symptoms, that I had been complaining of shortness of breath, palpitations etc for years and demanded an echo.

    It was confirmed by echo at my local hospital and they said due to the regurgitation I need to be monitored yearly - if it gets worse over time it will need to be repaired. It is just appalling that British GP's are the gatekeepers of correct care and that they deny patients adequate investigations and treatments.
     
  10. Skippa

    Skippa Anti-BS

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    I think being a hypochondriac I should know better than to have leaky heart valves and seriously now CBT my heart closed/strong again.
     
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  11. Mary

    Mary Senior Member

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    I don't think echocardiograms have any diagnostic relevance for ME/CFS per se. I had a full cardiac workup with chemical stress test about 5 years ago and passed with flying colors, no plaque buildup, everything great. And of course I have PEM and impaired immune system, etc.

    About 10 years ago I had an impedance cardiography done (twice) and it showed marked abnormalities as noted in Andrew Peckerman's paper: https://www.ncbi.nlm.nih.gov/pubmed/12920435 I do think this test was diagnostic for ME/CFS; unfortunately, they don't make the impedance machines any more or do the test (go figure!)
     
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  12. Mary

    Mary Senior Member

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    @justy - my ex-husband had MVP with severe regurgitation and he eventually had surgery to repair the valve and felt much better. So the surgery can be very helpful. Too bad you had to demand to be tested! I don't get it - it seems that doctors are trained NOT to listen to patients - I have lost so much respect for them over the years.

    I did reading on MVP at the time and am sure you know about this, but I read many places that magnesium and CoQ10 were both helpful for MVP, FWIW.
     
    justy likes this.
  13. justy

    justy Donate Advocate Demonstrate

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    Thanks Mary - I hadn't considered them as being useful so will get my supply out. The worry for me is that due to MCAS I react badly to drugs and don't know if I could have surgery, or what effect it would have on me. Currently I cant even have fillings done at the dentist due to reactions to the local anaesthetic.
     
    Mary likes this.
  14. Mary

    Mary Senior Member

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    Hi Justy - you might find these interesting, about magnesium and CoQ10 and MVP: http://mdheal.org/magnesiu.htm
    http://www.drsinatra.com/what-you-n...-valve-prolapse-including-natural-treatments/
    https://www.ncbi.nlm.nih.gov/pubmed/7752828

    That's rough about your MCAS! It would be great if someone could find an answer for that while they were busy figuring out ME/CFS ...
     

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