I Want a Second Opinion!

Discussion in 'Health' started by UPSed, Nov 24, 2021 at 12:08 PM.



Want to donate to imtbtrails?



  1. UPSed

    UPSed iMTB Hooligan

    Location:
    Simi Valley
    Name:
    Ed
    Current Bike:
    Niner Jet 9 RDO
    Well, in this case it would be a third or fourth opinion. 12 years ago, I had a pulmonary embolism. While I was in the hospital, I was diagnosed with cardiomyopathy. After hearing that cardiomyopathy runs in the family, the doctors thought I must have it too.
    I started seeing a cardiologist to be safe and of course was put on medication. After several years and a couple of different cardiologists, I decided to try someone new. My first visit, earlier this year, the doctor told me it doesn't sound like I have cardiomyopathy at all and she'd like to run some tests. I did my stress echo yesterday and my full echocardiogram today. Turns out my heart is perfectly healthy! No cardiomyopathy. I don't know whether to be mad with the previous diagnosis or happy with the current diagnosis. I think I'm just going to be happy I have a healthy heart!
     
  2. Runs with Scissors

    Runs with Scissors iMTB Hooligan

    Location:
    West Anaheim
    Name:
    Mark Whitaker
    Current Bike:
    2015 Giant XTC Advanced 1 29er
    Awesomeness. Didn't seem to slow you down much, so now you can braaaap with confidence!!!!
     
    Danmtchl, Bluesrider, Danimal and 6 others like this.
  3. UPSed

    UPSed iMTB Hooligan

    Location:
    Simi Valley
    Name:
    Ed
    Current Bike:
    Niner Jet 9 RDO
    I'll continue to ride conservatively. There are no trophies waiting for me at the end of my rides. Just beer. :)
     
    Stkx66, Danmtchl, ~JB~ and 12 others like this.
  4. herzalot

    herzalot iMTB Hooligan

    Location:
    Laguna Beach
    Name:
    Chris
    Current Bike:
    2020 Revel Rail
    Sounds awesome.:thumbsup: If an additional opinion does not involve invasive procedures and can be done at one shot, go for it! If it involves a long involved series of authorizations, referrals, tests, expenses and invasive procedures, I'd stick with what your body and your doc are telling you!
     
  5. mike

    mike iMTB Hooligan

    Location:
    Western US
    Name:
    Mike O
    Current Bike:
    HT, FS
    Great news, Ed. :thumbsup: Good on you for being proactive.
     
  6. Mikie

    Mikie Admin/iMTB Hooligan

    Location:
    North East Canada? , California
    Name:
    Mikie Watson
    Current Bike:
    Silver Cane
    This is such awesome news Ed! CJ and I are so happy for you!
    upload_2021-11-24_13-13-48.png
     
    Danmtchl, ~JB~, Bluesrider and 10 others like this.
  7. UPSed

    UPSed iMTB Hooligan

    Location:
    Simi Valley
    Name:
    Ed
    Current Bike:
    Niner Jet 9 RDO
    That's the joke, Chris. This is my third cardiologist in 12 years and she specializes in athletic people. She told me flat-out I was misdiagnosed and she sees absolutely nothing wrong with my heart.
    Thanks, Mike. I always wondered how I was perfectly fine then all of a sudden. When my last cardiologist asked why I was even seeing him, I knew it was time to seek another opinion.
     
  8. Faust29

    Faust29 Moderator

    Location:
    irgendwo
    Name:
    B. Bunny
    Current Bike:
    Moxie Mx3, SC Lizard & a Sutra
    That is good news… :thumbsup: But I’ve ridden with you. Never had any doubts about your health as you were ripping my legs off. :p

    Did the new Doc give any how or why she thinks the misdiagnosis happened? Is it a commonly misdiagnosed condition?
     
  9. UPSed

    UPSed iMTB Hooligan

    Location:
    Simi Valley
    Name:
    Ed
    Current Bike:
    Niner Jet 9 RDO
    She didn't say. I'm going with family history and the fact I have good insurance. :whistling:
    Honestly though, at the time, I was 50 lbs overweight with normal blood pressure and a resting pulse of 45 bpm. That's confused a lot of doctors over the years.
     
    Cyclotourist, Danmtchl, ~JB~ and 10 others like this.
  10. SnakeCharmer

    SnakeCharmer iMTB Hooligan

    Location:
    Front Range, San Gabes
    Name:
    Mike, aka "Ssnake"
    Current Bike:
    Trek FEX
    Ed, as fast as you are on the bike and as far as you ride says to me that you never had a heart issue. But I'm no doctor.
     
  11. sir crashalot

    sir crashalot iMTB Rockstah

    Location:
    laguna beach
    Name:
    gary fishman
    Current Bike:
    2018 banshee rune
  12. da big hills

    da big hills Well-Known Member

    Location:
    pearl harbor
    Name:
    cagey
    Current Bike:
    enduro 29
    did they stress you on the treadmill?
     
  13. UPSed

    UPSed iMTB Hooligan

    Location:
    Simi Valley
    Name:
    Ed
    Current Bike:
    Niner Jet 9 RDO
    Yup.
     
  14. da big hills

    da big hills Well-Known Member

    Location:
    pearl harbor
    Name:
    cagey
    Current Bike:
    enduro 29
    Bet it was hard to get the heart rate up to where they wanted it to be
     
    Danmtchl and Bluesrider like this.
  15. mtnbikej

    mtnbikej J-Zilla

    Location:
    Orange
    Name:
    J
    Current Bike:
    SC Chameleon SS, SC Hightower

    But now that you have spent all those years taking heart meds.....how much damage have you done to your kidney's?
     
    Danmtchl, Bluesrider and UPSed like this.
  16. UPSed

    UPSed iMTB Hooligan

    Location:
    Simi Valley
    Name:
    Ed
    Current Bike:
    Niner Jet 9 RDO
    I'm hoping zero. I'm on such minimal doses. My blood work always comes back good. I guess time will tell.
     
  17. Rich

    Rich Newbie with Hope!

    Location:
    Northridge
    Name:
    Richard
    Current Bike:
    2015 Specialized Enduro
    My son has genetic dilated cardiomyopathy (DCM) and I have learned a lot about it in the past 3 years.

    There is a disease called viral myocarditis in which your heart takes a dilated shape, looks the same as dilated cardiomyopathy. In the past, when it happened to someone with a family history of DCM they used to say it's DCM, and when it happened to someone with no family history they said viral myocarditis. Then they observed that 1/3 of patients with "viral myocarditis" get better, 1/3 stay the same, and 1/3 get worse and go on to need a heart transplant.

    Fast forward to this decade and they have a genetic test, performed on the blood or saliva, that can detect the mutation that "causes" DCM. So if you got unexpected heart dilation they do the genetic test and if you don't have the mutation they call it viral myocarditis, if you do they call it DCM. So looking back at the previous experience, they figured that the 1/3 who got better didn't have the mutation, and the 2/3 who either stayed the same or got worse probably did.

    My son has the mutation. Based on that, they told us that my son would not get better, he would stay at a plateau and then some day fall off it and need a heart transplant. They also told us that my wife and daughter, who also had the mutation, would eventually get heart failure and DCM too.

    But then things got even more complicated. As they did their new genetic test on more and more of the population, they found more and more people who had the mutation and didn't have any heart problems at all. It turns out it's not much of a predictor. Right now they aren't really sure.

    Meanwhile, my son got a Specialized Turbo Levo and started ripping it up again. He actually used it like a crutch, meaning as a tool to recover. Over the next 6 months he worked his tail off and turned the motor down little by little. He's now back on a regular bike, climbing and descending like a monster, and putting the hurts on me whenever we ride together, just like he used to. He now lives in Denver, climbs 14'ers and does long rides on MTB and gravel bike. His cardiologist is amazed, he says he's only had one other person recover from DCM like that, a marathon runner by the way.

    So what does that mean for you? Maybe you have the genetic mutation and maybe you don't. Probably you did need those meds at the time and maybe now you don't. (They'll probably want to keep you on an ACE inhibitor for life.) Maybe you just had viral myocarditis and recovered, or maybe you had DCM and had an unusual recovery just like my son because you kept riding the bike, because just like him you had to.

    My advice to you is, have one consultation with a cardiologist who specializes in genetic disease and get the genetic test. Or don't, and just keep living your life. Just be glad you are a cyclist, and therefore you're someone who recovers from this kind of heart disease because you didn't just lie down and accept your fate. Congratulations.
     
  18. UPSed

    UPSed iMTB Hooligan

    Location:
    Simi Valley
    Name:
    Ed
    Current Bike:
    Niner Jet 9 RDO
    Thanks, @Rich. That is wonderful news about your son.
     
    Danmtchl likes this.
  19. herzalot

    herzalot iMTB Hooligan

    Location:
    Laguna Beach
    Name:
    Chris
    Current Bike:
    2020 Revel Rail
    That is scary and ultimately amazing! Fingers crossed for you and your family! Thank you for sharing that, and for encouraging @UPSed. :thumbsup:
     
    Danmtchl, mike and UPSed like this.
  20. Danmtchl

    Danmtchl iMTB Rockstah

    Location:
    Bakersfield
    Name:
    Dan
    Current Bike:
    2020 Trek Fuel EX 9.7
    So if you were misdiagnosed in the hospital, when you went to see the cardiologist initially, did they run the usual tests to make sure you had cardiomyopathy? Seems like that would have been standard operation procedure.
     
    Obsidian and UPSed like this.
  21. UPSed

    UPSed iMTB Hooligan

    Location:
    Simi Valley
    Name:
    Ed
    Current Bike:
    Niner Jet 9 RDO
    That was 12 years ago and I want to say they assumed I had it as I had an enlarged heart and there's a history of cardiomyopathy in the family. I had the stress and echo at my first cardiologist and passed everything with flying colors yet I was still put on medication. When I asked about the medication I was told it was to take the "edge" off. I guess I should have known better.
     
    Obsidian and Danmtchl like this.



Want to donate to imtbtrails?