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what kind of doctors do we need?

karensue Message
14 Jul 2009, 03:02 PM

this is karensue alias kattsqueen,, just wanted to share a few ideas the doctors we need are nuerophysiologists and or especially an electro physiologist which is a cardiologist specialised in picking up syndromes on the ekg...i found one about twenty miles from home will call to see if he is interested in seeing me and or my son...same with the nuerophysiolgist His clinic is call the people first clinic so it has a hopefull name karensue alias kattsqueen ps. i read some where that there is only about 100 cases of andersen tawil disorder but i think there is more than twenty in my family and a few that are gone from the family like my sisters son that she gave up for adoption 35 years ago My cousins son given up for adoption,, to me it seems like way more than 50% penetrance in my cousins,,, prob since grand ma and grandpa were first cousins.
beryma Message
15 Jul 2009, 06:04 AM

Hi again Karen, I got a reply from Dr. Segal. He suggests I have my ekg checked by an expert. That is my main problem, I can't find an expert. I'm not sure how things work in the U.S. but I have to get a referral from a doctor to see a specialist. He was encouraging though. I'm just going to keep looking. Hopefully the right doctors will be at the clinic I go to next. Feels like this journey will never end and it is wearing me out. I am going to check if we have any of the specialists you refer to around here. Kathy