oh good =) I would get the test results copy them for a new doctor and try to figure out what's going on; it may take some time but hopefully someone can figure it out
My insurance initially denied it thats how i know i was being sent for a cardiac MRI for ARVD, my doctor never told me he just said something may be wrong he doesnt think so but just wants to be safe. Then my doctor appealed and insurance approved it. I had numerous other tests done prior to the MRI, bloodwork, echo doppler, EKG, and apparently that stuff was not sufficient to diagnose what if anything was wrong.
Your insurance denied an MRI for ARVD diagnosis? If so, I'd appeal and get my dr to help with getting an MRI done ASAP if they do suspect you have it.
My dr suspected ARVD due to runs of polymorphic VT during my ablation and they kept me in the hospital and sent me to have MRI the next day. Don't scare yourself too much with ARVD it's in the top list they test for when they find certain key points and have to rule it out.
MRI may not always see what's going on; with me I had just had surgery and major complications, so I couldn't breathe deep and hold my breath - the testing said inconclusive due to patient movement and wall motion degredation.
I'm with Cindy, find a reputable dr in your area to find out what's going on before something happens.
I think this may be one of those things where the internet is not your friend when researching since we all tend to head towards the worse case scenarios. Normally this diagnosis if confirmed is called ARVD and is very treatable thru most times an implantation of an ICD into the chest wall. In the U.S. believe it or not it is fairly common in the odds range but yep could be scary but the super positive news is that you've possibly had this for 10 years now and from what you've posted i assume have had no issues. There is a great site at Johns Hopkins Hospital that goes pretty in depth about the clinical trials and success' of patients with ARVD but for me if it were my body the first and fastest thing that i would do would be to get a confirmation of this diagnosis because it doesn;t sound to me like you got one when you said "the doctor thought"...i would make an appt. w. a super good heart doc in your area and get yourself tested and see if this is even really going on because this can change your whole life either way. If you don't you want to correct this w. the insurance co. immediately or you'll spend the rest of your life fighting for any ins. co. to insure you with a pre existing illness like this and to me i would want to know if i did or didn't have this going on. Why spend the rest of your life wondering what the heck is really going on....make the call it'll be the best money you have ever spent in finally getting the answer.....