| Author | Message | ||
     doloresmc |
in the long Q-T maze. Doesn't help that my doctors seem to be lost too. My story starts a year ago when I had an episode of sudden cardiac death..I was admitted into the ICU when they found my long QT and the fact that I was running a miocarditis. My heart went back to normal in a couple of months but the long QT is here to stay. I was released from the hospital when my QT went back to 440 after being high in the 620. I had some EKG done a while aga and the QT came back long again 498: they gave me toprol and now I'm waiting on some testing for me and my 2 kids: and I am getting anxious. They really can't say if I was a long QT before the CHF or if I have it now as a consecquence of it, either way it's important to know. They are starting a new QT clinic here where I live that's why it's taking forever to schedule the follow ups. My doubt is will I ever know or am I subjecting myself and my kids to some testing just to satisfy the researchers curiosity? Thanks! Dolores | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
It is unfortunately not always possible to give an exact answer to the question, whether a patient have LQTS or not. In your case the prolonged QT could be due to your myocarditis and CHF or inherited. It seems reasonable to measure your Kids QTc, so I dont think your are subject to a researchers curiosity but instead excellent medical care | ||
| doloresmc |
Thanks for your reply..the good news is that apparently neither my parents show long QT on their EKG's: my father's 380 and my mom's 440. But I still need to have my kids tested since they may have inherited it from me. I am also curious as to what participation a drug I was taking at the time may have had (zanaflex) in the alteration of my QT. Also my QT was long while in the hospital but then got back within the normal range: wouldn't that be an evidence of it being secondary to the cardiomyopathy. Until we know, would you suggest we treat ourselves like people that have LQTS?. thanks again! Dolores | ||
| debbie |
The highest Ekg I've had is 450 and I have had passouts.I have to treat myself as though I have it with my family's history. It may never show that I have LQT thats why this is so hard to diagnose. The same with your parents unless you have a genetics test done you may never know. And even then they might not find the gene. Mayo clinic is doing a genetics test now and so far have ruled out LQT1 and LQT2.It has been almost 9 months since they have started looking with no luck yet. We are so afraid that they won't find it. |