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Two cents worth of free advice -- persistence [LONG]

Discussion in 'General ME/CFS Discussion' started by TenuousGrip, May 22, 2018.

  1. TenuousGrip

    TenuousGrip Senior Member

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    It's been a rough go for me lately but I feel like I should push myself to write this in the hopes that something ... anything good might come from it. I've said some of it before ....

    @debored13 is having some cardiac symptoms. Many of us are. I suggested that he look into Cardiology and an echocardiogram.

    But that probably isn't the end of the story; it's likely the beginning.

    I've had four or five echos since my cardiac symptoms came on suddenly in September 2014 -- echo, stress echo, bubble echo. They were all deemed pretty normal in the report of the MD tasked with interpreting them.

    But I wasn't so sure, so I took an immense amount of time and non-existent energy to look at the actual numbers from the echo, and not the MD's interpretation of those numbers. That obviously means that I had to learn what every single abnormal parameter meant (puzzle pieces), and then put those puzzle pieces together until some sort of picture formed.

    And the picture that I saw looked like heart failure.

    Five Cardiologists and Electrophysiologists (specialists in heart rhythm disorders) disagreed with me. None would order the next logical test -- right heart catheterization -- to see if I was right.

    So I sent my echos to Brigham and Women's Hospital -- David Systrom. He totally agreed with me. That's how I got to Boston for iCPET (Invasive Cardiopulmonary Exercise Testing) last November, where I was diagnosed with Heart Failure with Preserved Ejection Fraction (HFpEF) and exercise-induced Pulmonary Hypertension (WHO Group II).

    Now my task is to figure out what's causing my heart failure. Since traveling to Boston I've had others look at my echocardiograms AND my iCPET results and pronounce them 'normal,' even though the report attached to the iCPET clearly states that I have HFpEF and the Pulmonary Hypertension.

    [It makes you wonder if some of these doctors can even read English, much less whether they can properly interpret the actual results associated with the test.]

    I have, again, turned my meager resources toward understanding my iCPET results. I have come to believe that they are most consistent with something called a restrictive cardiomyopathy. I figured out who the top restrictive cardiomyopathy people in the US are and reached out to a couple of them, saying "Hey. Does this iCPET report look like a restrictive cardiomyopathy test result to you ??"

    It does.

    I'm now working on being seen at any of a couple of the country's best Heart Failure/Cardiomyopathy clinics. The things that are likely possibilities for what's wrong with me are pretty much all bad but ... I gots to know.

    So ... the "wisdom" I'm trying to impart is .... don't give up. Don't give up on refining your diagnosis. But maybe more importantly ... don't trust that your doctors know what they're doing with us outliers (patients with rare diseases/disorders). Look up all of your (abnormal) test results at the most granular level you can. Understand what abnormal values mean. Come back to PR and get help interpreting those test results (as so many do).

    In my very personal opinion ... ME/CFS describes a cluster of symptoms but there may be a couple or dozens or hundreds of different underlying causes among all of us. I think "subtypes" will be of immense value to researchers going forward.

    Even if we figure out what happened to my heart (via a biopsy) it will still not answer the critical question -- why ?

    But I will try my very best to figure out the answer to that one too -- given enough time.

    Don't give up. Don't EVER give up.

    I have surrendered but I have not given up. They aren't the same thing. That's something I've learned along the way.

    @JBoneske .... this one's for you, too :)
     
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  2. Gingergrrl

    Gingergrrl Senior Member

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    Great post @TenuousGrip and I know that it will help many people in the future.

    I love both of these quotes about researching your test results on the most "granular" level and not assuming that any doctor is going to do this for you! And I often use the word "puzzle pieces" when describing my own situation b/c it involves so many different things coming together (doctors, tests, insurance approvals, etc) before you can even do the treatment. And I always come back to PR b/c there is such a wealth of knowledge and experience here and so many kind and generous people willing to help those of us (me) who have no science backgrounds.

    This is now my personal opinion as well.

    I would have to know as well and am very much like you in this regard. I hope you will get to be seen wherever you choose and if you are still coming to my city in the future for tests or treatment, please let me know.
     
  3. Runner5

    Runner5 Senior Member

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    PNW
    I have heart disease but I'm pretty sure it's from food consumed #AmericaMMhhhmmmm

    I also have diabetes insipidus** so sure my ongoing electrolyte issues don't help things. *sigh*

    I'm 43 and I guess in my head it seems way too young to have these issues. I have an EKG on Thursday. I really want to turn things around and live to 95 and get strong, but it's going to take baby steps because that's all I got in me. I don't know why it took me so long to make major changes, maybe I was hoping ice cream would actually turn out to be a health food. :p

    **not related to T2D, it's a kidney issue where I wash out my electrolytes
     
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  4. valentinelynx

    valentinelynx Senior Member

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    Tucson
    Your post made me wonder if your findings might be consistent with those found in many ME/CFS patients of "small heart syndrome" and low circulating blood volume. I apologize that I do not know precisely how the echocardiographic findings of these syndromes compare with those of restrictive cardiomyopathy, but I imagine that they are similar in some ways. What I mean is that I don't know if an ME/CFS patient with findings of reduced cardiac volume and reduced circulating blood volume would have similar echo findings as one with restrictive cardiomyopathy, but it would be interesting to know.

    Here's an article about the research showing "small heart syndrome" and reduced circulating blood volume in ME/CFS.
     
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  5. mariovitali

    mariovitali Senior Member

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    @TenuousGrip

    Thank you for your message and i couldn't agree more with your thoughts on being persistent. If i wasn't persistent i wouldn't be standing here right now so i know exactly what you mean.

    You said :

    I couldn't agree more and i am happy -in my point of view- that ME/CFS Researchers may well be starting to consider this.

    I will try to give my two cents : I went through your message and according to a Book called "Handbook of Liver Disease" which i am not allowed to copy paste here , restricted cardiomyopathy can be a result of Hemochromatosis. If you search the forum you will see my numerous mentions about whether the comorbidity between ME/CFS and Hemochromatosis (and actually many more conditions) can be setting the stage for ME/CFS.

    Please have yourself checked for Hemochromatosis and let us know. Here is the complete list of conditions that according to my hypothesis, all ME/CFS Patients should be examined for :


    https://bit.ly/2s3YzFy

    EDIT : I just found this from Wikipedia, Hemochromatosis is there as a possible cause :

    https://en.wikipedia.org/wiki/Restrictive_cardiomyopathy

    CC: @JaimeS , @Janet Dafoe (Rose49)

    Interestingly , 4 entries in the Google sheet i shared are also listed as causes of Restrictive Cardiomyopathy in Wikipedia namely Gaucher's Disease, Glycogen Storage Disease, Hemochromatosis and Niemann-Pick Disease
     
    Last edited: May 23, 2018
  6. TenuousGrip

    TenuousGrip Senior Member

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    Many thanks, @valentinelynx .

    They are consistent with "Small Heart Syndrome." One of the first contacts I made was with Dr. Kunihisa Miwa in Japan. I think he was looking at this before Dr. Newton.

    But the question I haven't ever asked Dr. Miwa was ... "Did you ever order Endomyocardial Biopsies (EMB) on these patients to find out what was really going on ?" They may very well have all had restrictive cardiomyopathies.

    I may still reach out to him and ask that question.

    My findings are also totally consistent with what's known as "Stiff Heart Syndrome --" really just another (the most common) restrictive cardiomopathy.

    These things are so rare that I think the majority of cardiologists would never even think of them, even if a case were staring right at them.

    I think what could be going on is that these researchers (eg, Miwa, Newton, Cheney) simply may be looking at cases of restrictive cardiomyopathy and -- unaware of it -- assuming they've found something new. I sure don't know that but it's possible.
     
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  7. TenuousGrip

    TenuousGrip Senior Member

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    @mariovitali

    You're absolutely right about hemochromatosis being a possibility. My sincere thanks.

    But the hematologist said that my serum ferritin levels were actually a bit low. While that doesn't definitively rule it out, it tends to reduce the likelihood that this is my underlying cause.

    But it's in the same category of pathologies that we're talking about. I've just been accepted into one of the US's best (some would say the best) Heart Failure/Cardiomyopathy clinics and have a July appointment.

    It looks like I'll be getting my biopsy ... without spending the USD$35,000+ that a trip to Berlin would have cost me.

    Thanks again.
     
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  8. mariovitali

    mariovitali Senior Member

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    No problem,

    It's good that you checked for Hemochromatosis. The thing is that there may be more causes (unfortunately) for your condition.

    Best of Luck and keep up the fight :)
     
  9. TenuousGrip

    TenuousGrip Senior Member

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    Somebody PM'd me to ask me how this all came on -- what my initial symptoms were. Another long post ... in hopes that it may help somebody else :)

    One day, in September 2014, I got dizzy walking up the stairs, felt heart palpitations in my chest, got short of breath with only a bit of exertion, and ... shortly thereafter ... passed out a few times (eventually, I passed out a couple dozen times). I also had too many "near syncopal" (almost passing out) events to count.

    A cardiac event monitor (a few months after initial onset) showed rapid atrial fibrillation, atrial flutter, supraventricular tachycardia, ventricular trigeminy, bradycardia, and atrial tachycardia with variable block. So I went from a normal regular heart rhythm to a handful of too-fast and too-slow arrhythmias.

    I've been athletic my whole life -- biking running, skiing, hiking ... the works. But within days after the initial 9/2014 onset I couldn't get up the stairs without using both hands. Walking on flat ground was pretty okay but trying to jog or hit an incline just ruined me.

    Later came the exhaustion, the cognitive dysfunction, and feeling like I'd been poisoned ... all the time.
    The cardiologists said it was "just atrial fibrillation" but I was pretty sure it wasn't that simple.

    Nine months before it came on (and it really all came on at once) I suffered an episode of DRESS Syndrome -- a severe adverse drug reaction. DRESS is known to have effects on the heart, as much as two years after onset.
    DRESS can also trigger a fulminant (acute) or a subacute (chronic) form of myocarditis -- either inflammatory, infectious, viral, autoimmune, or other. These are still possibilities.

    I still have all of those symptoms but extreme care means I no longer pass out. But the exercise intolerance is, for me, just utterly shocking.

    Hope this helps somebody else in some way.
     
  10. mariovitali

    mariovitali Senior Member

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  11. TenuousGrip

    TenuousGrip Senior Member

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    You're exactly right, @mariovitali .

    The current theory about the pathophysiology of DRESS Syndrome is that it sets off a cytokine storm (ie, it sets off a bomb in the immune system) and that it induces "transient hypogammaglobulinemia --" suppressing the immune system and allowing latent viruses to be reactivated.

    [Stanford's ME/CFS clinic says that I -- like so many of us -- have very high IgG levels to a number of the usual suspect infections.]

    Apart from my skin (maculopapular rash), the primary organ that DRESS affected in me was my liver. All the usual signs of drug-induced hepatitis.

    I think antibiotics and anticonvulsants (I reacted to Oxcarbazepine) are the two most common categories of drug that can cause DRESS.

    It's also still possible (there may be no way of knowing) that what I had was HLH rather than DRESS.

    My hope is that ... whatever monster lurks within me ... we'll find its footprints with the Endomyocardial Biopsy.
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    I hope so and that would be amazing! Thank you for keeping us all posted re: this process that you are going through. I do not know of anyone who has had a heart biopsy in the US, that did not have to travel to Germany, so you are a true revolutionary!
     
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