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I think I have been misdiagnosed...

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  • I think I have been misdiagnosed...

    Following is a copy of my most recent examination reports. Please take a look. Maybe I don't have HCM...What are your thoughts on the following numbers?



    ABNORMAL GXT EF 71%
    CARDIAC MURMUR
    BRADYCARDIA 52 bpm

    EKG Report: Midmark ECG Observations
    Sinus Bradycardia 52 BPM
    EKG T AXIS 36 deg T wave axis,
    EKG QRS AXIS 37 deg QRS axis,
    EKG PWAVAXIS 30 deg P wave axis,
    QRS INTERVAL 94 ms QRS duration,
    QT INTERVAL 442 ms QT interval,
    PR INTERVAL 166 ms PR interval,

    ECHO EF 60-65%, Mild MR/TR/PVR Enlarged Inf Vena Cava
    LHC - EF 65% - MEDS
    NUCLEAR STRESS TEST- 9/12, NORMAL

  • #2
    Re: I think I have been misdiagnosed...

    Welcome to the board! When you get a chance, please introduce yourself in the "Hello! My name is . . ." forum.

    Nobody on this board can give a medical diagnosis, and a qualified doctor would want more information than is provided here. But I strongly recommend making an appointment with one of the specialists in a recognized Center of Excellence for HCM (there's a list on the HCM website). These are docs whose career centers on HCM, so they see a lot of it and know a lot about diagnostics and treatment.

    Since you say this is your most recent examination, I assume you've had echos and other exams in the past, but you had confidence in the diagnosis of HCM then. What has changed in the information you're being given? You should be aware that these numbers are not constants - they'll vary from measurement to measurement. Are you on different meds now than earlier? That would certainly change the measurements.

    Gordon
    Myectomy on Feb. 5, 2007.

    Comment


    • #3
      Re: I think I have been misdiagnosed...

      HCM is general term used to classify numerous heart ailments which, over the years, show similar characteristics (enlargement, stiffness, electrical issues) affecting the heart. It can't be diagnosed by an EKG/ECG alone, but by echo or MRI. I'd suggest seeing an expert who will likely reorder new tests (not unusual). If this expert says you have HCM, they can work with your local cardiologist in your care. While we'd all like to get mis-diagnosed and not have HCM, the important thing is that they have identified a problem and are working on relieving your symptoms (which you didn't state any). Hoping you get some answers from the experts. Keep us up to date as you go through this journey.
      Marc
      Diagnosed @ 48
      Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
      Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
      AICD - Valentines Day '08, Spark Plug replaced 11/14
      After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
      Quietly going insane . . .

      Comment


      • #4
        Re: I think I have been misdiagnosed...

        Originally posted by mbcube View Post
        HCM is general term used to classify numerous heart ailments which, over the years, show similar characteristics (enlargement, stiffness, electrical issues) affecting the heart. It can't be diagnosed by an EKG/ECG alone, but by echo or MRI. I'd suggest seeing an expert who will likely reorder new tests (not unusual). If this expert says you have HCM, they can work with your local cardiologist in your care. While we'd all like to get mis-diagnosed and not have HCM, the important thing is that they have identified a problem and are working on relieving your symptoms (which you didn't state any). Hoping you get some answers from the experts. Keep us up to date as you go through this journey.

        When you say "expert", is this someone other than the local cardiologist?

        Comment


        • #5
          Re: I think I have been misdiagnosed...

          If you go to the HCMA home page, look under the "Resources" link for "HCM Centers". You will find a listing of HCM Centers of Excellence(COE). The Drs at these Centers specialise in HCM and see a very high volume of patients with this affliction They are up on the state-of-the art with the research on the disease, diagnoses and treatments. HCM afflicts a very small percentage of the population and most local cardiologists will rarely see a case Consequently, the disease is often misdiagnosed and/or improperly treated. Most of us on this forum have been to a COE for treatment at one time or another. COEs will normally work with local cardiologists to help them "raise their game" and provide effective treatment for HCM patients.
          Joel

          Born 1955 in USA, DX'd w/HCM 1996, in United Kingdom
          2011, 2013, 2014 ablations for Afib and flutter in UK, INOVA Fairfax, VA, and Johns Hopkins
          June 2014 DX HOCM at Johns Hopkins
          October 2014 Myectomy and Cryomaze at Mayo Clinic

          Comment


          • #6
            Re: I think I have been misdiagnosed...

            Yes, even excellent local cardiologists don't treat that many HCM patients. Many of us see both an HCM specialist and a local cardiologist (unless we live in the same city as the specialist). For example, I see an HCM specialist in Cleveland, but have a local cardiologist as well.

            Pain to have multiple docs? Yes. Does it cost more? It can, but not as much more as many people expect. Most insurance plans will cover such visits (though to be sure, some fight it, and some cover it only if they've been asked in advance). And the travel itself is tax-deductible.

            Gordon
            Myectomy on Feb. 5, 2007.

            Comment


            • #7
              Re: I think I have been misdiagnosed...

              When I first DX with HCM I had a horrible HMO (seriously - HORRIBLE). They sent me to 13 doctors who all confirmed I had HCM. And mind you, this is in Los Angeles. Only 3 had current HCM patients. Did I want someone who's only seen a handful of patients like me or one who sees primarily only hcm patients? In all my years on this board, I can't begin to state how many of us have been seen by doctors who either didn't have a full grasp of the fickleness of this disease, or were too proud to refer them to someone who did. Especially when one may be looking at surgery some day - you only have one heart, you want experience. (clarify - I am NOT stating you're in need of surgery)
              Marc
              Diagnosed @ 48
              Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
              Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
              AICD - Valentines Day '08, Spark Plug replaced 11/14
              After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
              Quietly going insane . . .

              Comment


              • #8
                Re: I think I have been misdiagnosed...

                Originally posted by mbcube View Post
                When I first DX with HCM I had a horrible HMO (seriously - HORRIBLE). They sent me to 13 doctors who all confirmed I had HCM. And mind you, this is in Los Angeles. Only 3 had current HCM patients. Did I want someone who's only seen a handful of patients like me or one who sees primarily only hcm patients? In all my years on this board, I can't begin to state how many of us have been seen by doctors who either didn't have a full grasp of the fickleness of this disease, or were too proud to refer them to someone who did. Especially when one may be looking at surgery some day - you only have one heart, you want experience. (clarify - I am NOT stating you're in need of surgery)
                Interesting update. I wore a Holter monitor a couple of weeks ago. My cardiologist called and said at times I had very low heart rates that likely brought on my symptoms. Thus they are thinking I may need a pacemaker. Do you guys have any thoughts?

                Comment


                • #9
                  Re: I think I have been misdiagnosed...

                  Low HR can cause problems, but it doesn't necessarily do so; many people tolerate a fair amount of bradycardia pretty well.

                  I'd really recommend seeing a specialist.

                  Gordon
                  Myectomy on Feb. 5, 2007.

                  Comment


                  • #10
                    Re: I think I have been misdiagnosed...

                    We all slow our heart rate when we sleep. On occasion, a dream or sudden sound may trip us into a rapid pace. With an HCM heart, this change is not tolerated as well as in a "normal" heart. About 1/2 of my VTs are recorded while I'm sleeping (My dog says I run in my sleep!). I too get a bit brady (slow) when I sleep, and my AICD adjusts it up to 50. When I do my data dumps, I find that my pacing is less then 2%. Yes, do see an expert.
                    Marc
                    Diagnosed @ 48
                    Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                    Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                    AICD - Valentines Day '08, Spark Plug replaced 11/14
                    After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                    Quietly going insane . . .

                    Comment


                    • #11
                      Re: I think I have been misdiagnosed...

                      Okay. So I got my pacemaker 3 days ago. While I am still sore, I can tell that my symptoms are pretty much gone. Stairs after eating always gave me dizziness, weakness in the legs, and chest pain. So far, no problem!

                      Comment


                      • #12
                        Re: I think I have been misdiagnosed...

                        Did they install a pacemaker or an ICD that can pace? Are you on medication? Have you had a second opinion with an HCM expert?
                        Marc
                        Diagnosed @ 48
                        Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                        Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                        AICD - Valentines Day '08, Spark Plug replaced 11/14
                        After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                        Quietly going insane . . .

                        Comment


                        • #13
                          Originally posted by mbcube View Post
                          Re: I think I have been misdiagnosed...

                          When I first DX with HCM I had a horrible HMO (seriously - HORRIBLE). They sent me to 13 doctors who all confirmed I had HCM. And mind you, this is in Los Angeles. Only 3 had current HCM patients. Did I want someone who's only seen a handful of patients like me or one who sees primarily only hcm patients? In all my years on this board, I can't begin to state how many of us have been seen by doctors who either didn't have a full grasp of the fickleness of this disease, or were too proud to refer them to someone who did. Especially when one may be looking at surgery some day - you only have one heart, you want experience. (clarify - I am NOT stating you're in need of surgery)

                          Hello there,

                          I know this is an old post. But you mentioned that you had an HMO before. By any chance, was it Kaiser? Because that's what we have. Also, if you don't mind can you please read my post and give me your opinion. Thanks!

                          Comment

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