I just met with the nurse practitioner and my cardio and they said my CTA was perfect with no blockage in arteries and heart pumping function was perfect!!! So I do not actually have ischemia but remain very functionally impaired.
Excellent! This is definitely the best news of the day.
Having ischemia would be a whole different can of worms that you'd have to deal with at the same time as your ME/CFS. It's a great relief to hear that you're fine there.
There's also some hidden good news here. If you have "no blockage" and perfect heart pumping function, it's really hard to see how, when you reach your uncle's age in three years, you'd have enough ischemia to cause you problems. In fact, I would be cautiously optimistic here and say that the complete absence of ischemia at your age constitutes modest (though inconclusive) evidence that you did not inherit your uncles' genes for cardiac problems.
@
zzz I wanted to add that I do NOT have the abnormal oscillating t waves or inverted/flat t-waves that you wanted me to ask about from Dr Lerner's study so that is good!
It sure is! Dr. Lerner said that everyone with ME/CFS had inverted or flat T-waves. Apparently, he was wrong.
So all the cardiac testing you've had so far (and these tests are beginning to add up) show a perfectly healthy and normally functioning heart.
My cardio is convinced I do not have myocarditis but is going to talk to Dr. K.
With your T-waves being normal, Dr. Lerner's case that all PWME (and specifically you) have myocarditis seems to have been substantially undercut, especially when you factor in the normal echocardiogram. Although myocarditis can cause symptoms such as shortness of breath, those symptoms (and your other remaining ones) are considered to be due to dysautonomia by the CFS experts, and not to any cardiac issues. For example, the Canadian Consensus Criteria consider "exertional dyspnea" (which is exactly what you have) to be one of the symptoms that qualifies someone for a diagnosis of ME/CFS. Section 6 of the Criteria, "Autonomic Manifestations", includes NMH, POTS, palpitations with or without cardiac arrhythmias, and various breathing dysregulations, including exertional dyspnea.
That seems to cover everything we know you've got.
My meeting with the pulmonologist was not very useful and not sure if I will be doing any breathing tests w/him or not.
I hope not.
Our breathing tests often turn out abnormal, but that's just due to all the autonomic factors of which your pulmonologist is blissfully unaware. A few years ago, my allergist had me do the standard breathing tests at my annual appointment, and sure enough, the results were very low. She was very concerned that this might be due to some very nasty condition (I've forgotten which one), and that it could turn very bad if I had it and wasn't treated for it. So she recommended tests. I assured her that these breathing results were not unexpected for someone with CFS, and did not bother with the tests. My breathing tests in succeeding years were all similar; I am quite stable. My allergist has noticed this, and has made no more suggestions about additional tests.
He was clearly in a rush and just wanted to tell me that my lung scan did not show any blood clots. While this is good, I never actually thought that I had a blood clot.
They were trying to track down the cause of your breathing problems. In ME/CFS, these are assumed to be due to dysautonomia unless there is reason to expect otherwise. But your L.A. doctors don't know this, because they don't know ME/CFS, which I think is becoming more obvious.
I thought the test showed if perfusion of air & blood was normal but I guess to him this is the same thing.
Technically, it's blood perfusion and lung ventilation. I got the feeling from the way you described it earlier that they were mainly looking for a blood clot in the perfusion scan, and threw in the ventilation scan because it was easy and would rule out any physical obstruction in the lungs. But I don't think they really expected to find any, and they didn't, so he didn't bother mentioning this to you.
He felt my history was more complex than the patients he normally works with and when I mentioned viral re-activation of EBV, I could tell that I'd lost him.
Yeah, he's a pulmonologist. EBV is a virus.
Sigh.
I explained that since May/June, I've been having worsening shortness of breath especially while walking, taking a shower, or talking. He said, "Well, that's not normal" and I thought, "No #%$@ Sherlock" and could see I was not going to get much further.
He trained in pulmonology, and they don't teach you about ME/CFS or its symptoms there. Nor do they typically publish articles about ME/CFS in pulmonology journals. How was he to know?
The same can be said for any other specialty. Articles about ME/CFS are published in professional journals (thousands of them, actually), but how many doctors read them? The articles tend to be specialized, like all journal articles, so it's very hard to get a good overall picture of ME/CFS just from the articles.
He said I could do the breathing tests on Mon but I told him I was pretty sure I was going home tomorrow (Sat) night. But if I thought it could be useful, I used to see an allergist/immunologist and could always make an appt with him for breathing tests which never occurred to me.
If you see your allergist, you'll get the same reaction I did, and they'll want to do more useless tests. As I'm sure you've noticed, useless tests are very draining of energy. (Even the useful ones are. But at least they're useful...)
And speaking of tests, I've been wondering more and more exactly why your upcoming angiogram is being done. Angiograms are rather safe, but they are invasive surgical procedures, and as such, easily cause PEM in many PWME. With all you've been going through, you don't want PEM if you can possibly avoid it. Does your ME/CFS specialist think that the angiogram is necessary? You've got your echocardiogram, your CT scan, and your EKG all showing a perfectly normal, healthy heart, and for someone with ME, your other symptoms can all be explained by dysautonomia. Cardiac problems of the type that would show up in an angiogram are not a normal part of ME, nor do I see any reason to suspect that they exist in your case. I'd recommend finding out what the reason for the angiogram is at this point. Is it just that your cardiologist, being a cardiologist, looks for cardiac problems first, and autonomic problems only after cardiac problems have been completely ruled out? That would not seem to make sense in ME, where autonomic causes are the rule, and cardiac causes of the type that an angiogram looks for (problems in blood perfusion in the heart and surrounding arteries or veins) are simply not part of ME.
Of course, if you don't do the angiogram, you don't get the endomyocardial biopsy. But no one does an angiogram just to get an endomyocardial biopsy, nor are these biopsies done through this route without the angiogram part. The biopsies aren't essential; that's why no one does them in this country. If you have viral myocarditis, the virus would be visible in blood tests, and could be treated with antivirals. It wouldn't be any of the herpes viruses, as the ones you have active are being treated by the Famvir. And your ME/CFS doctor has ruled out parvovirus.
The one thing he did say which was fascinating, and I am going to ask my cardio, is that sometimes even though you do not have myocarditis, you could have a virus in the conduction system of your heart (which I assume equals autonomic problems?). Has anyone ever heard of this?
I've seen a couple of references to viruses in the conduction system, but these references were describing how the viruses used the conduction system to get to the heart muscle, where they made their home. I've seen no reports of viruses causing trouble in the conduction system itself.
@
Gingergrrl most regular drs don't understand what is going on with us. They have never learnt in school or if they did at all, they heard the root cause of our illness is false illness beliefs.
Medical schools are quite silent on the subject of ME/CFS. If we are going to have knowledgeable doctors, then they are going to have to be taught about ME/CFS properly in medical school. And that's doctors of all specialties. Furthermore, as @
Dr.Patient said,
Until there is at least a one month rotation during medical school in all medical schools, and in residency training (primary care) for MECFSFIBRO, this attitude of physicians will not change.
Until such doctors become the majority of practicing doctors (which will not happen in my lifetime), or unless a simple, standard treatment for ME/CFS is discovered and adopted, we will face the problems we do.
...and because this disease does not belong to any medical specialty, we are left behind, sick and severely sick.
Technically, it belongs to neurology; both the CDC and the WHO classify it as a neurological disorder. But you could probably count on the fingers of one hand the number of neurologists who have a good understanding of ME/CFS. A large part of the problem is that although ME/CFS may have neurological roots, it involves many other major body systems as well.
Dr. Jay Goldstein recognized this problem, and recognized that it exists for a number of illnesses, such as ME/CFS, FMS, IBS, MCS, CSS ("all the esses", he said), etc. So he created a new branch of medicine called neurosomatic medicine, which covers those illnesses that have roots in the brain, but effects throughout the entire body. This is the medicine that he practiced, and practiced quite successfully. Unfortunately, it requires a specialist's knowledge of neurology, psychiatry (essentially biological), immunology, and endocrinology. There aren't many doctors with that kind of knowledge, and Dr. Goldstein has had no successors. But he did leave books...
Amen.
