hi, i saw the cardiologist yesterday. my husband and i liked him? i told him things and kind of acted dumb and he would finish my sentenced correctly (i was testing him to see if i thought he even knew anything about POTS or EDS). i’m on a 24 hr heart monitor, then have the king of hearts on for a month. i told him i found him from the dinet.org site for good dr. in your area and other patients said he was really good with patients that were told it was all in your head and he said i wish they would take me off that site because the cleveland clinic now is opening a neuro-electrophysical dept. for pots patients so he is taking his interests in another direction. so i said then you don’t want me and he said oh no it’s ok i can help you????? i started out in neurology at the cleveland clinic before i knew about dr diana or dinet.org or my local eds chapter, so why didn’t the neuro send me to the electrophysical dept which is part of her dept???? she told me after asking her 3 different questions that i need a cardiologist!! so i go to a cardiologist and he says what he said. i’ve been working on this since feb and i am not any farther than 20 yrs ago. i can not get anyone to give me diamox??
i have also been having alot of problems with my stomach-delayed gastric emptying, i get kidney stones but this was different so dr sent me for ct scan and they found spot an pancreas that can not be ruled out as neoplasm, fatty liver! i have never drank a drop of liquor in my whole life why would i have a fatty liver?? now more test i hate this. see this is what we go through. i have 4 kids that all show signs and i don’t even want to think about it. it sounds like i’m “debbie downer” today—sorry.