Hi,
its so good to meet someone going through the same thing. were you a patient a mayo? i'm assuming you have to be to access their portal but i know how good they are there so thats great! i live in new hampshire and first it was my gallbladder but it took someone 6 months to tell me thats what they thought was wrong with me. i did have a excellent surgeon, i remember her telling me at my pre-op appointment i had gallbladder symptoms and some symtons that werent gallbladder related but at that point i was still clueless. after surgery i was still sick so she referred me to their GI dept. mind you this is the biggest hospital in new hampshire and used to be referred to as NH's best hospital and i always had good experiences there but many eople have told me how dissatisfied they were amoung other things. anyway i went through a smartpill and a hydrogen breath test both normal. my endoscope was this past june 2. this is when things went really downhill. first i was told i would only have mild sedation, no anestesia. i begged for anestesia. the dr made these wacky reasons why it wasnt possible. i was terrified and upset and i just thought the biggest hospital in the state doesnt have enough anestesia? so i only went through with it because i knew i really needed it done. ell the mild sedation did nothing for me. i literally felt everything to the point i was choking and gagging on the hose. a week later i got a letter on my portal. i did have biopsies. it said no infection. negetive for celiac and h plori also no dypepsia. but i dont know if you had this if you did maybe you could explain it. it said "linear endrocine cell hyperplasia with the possibility of autoimmune gastritis. the only comment from the dr was it was nothing to be concerned about but did require follow up. of course i was scared. i had no idea what it meant but i thought it was concerning. right after i called them asked to speak to the dr and i told them why i wanted to speak to him. they refused. about a month later you know i heard nothing from them at all so i called to try to speak to the head of the motility dept.i left a message kept calling nothing. then i receive a call from a "GI manager" which was useless but sorry this is so long. obviously i knew i needed to go somewhere else. but this place was dartmouth hitcock in Lebanon, NH and since NH did me wrong mostly for over a year so i felt i had no choice but to go to Boston. my appt. i couldnt get in until november 10 at mass general which is a top hospital in the country im looking forward to it but i do wonder and worry if anything could change between june and november. its scares me in the back of my mind. i wish i could put my e-mail her for you but i know thats not allowed but would love to talk to you again. 😉