Update: The nurse was wrong, 5HIAA levels are normal so I don't think there is a need for a radioactive tracer body scan. The good thing about Miami is if a doctor doesn't know something, they send you to another doctor that would know.
I have seen 2 more GI doctors. One does surgery on esophaguses and he felt that while the esophagus is enlarged with a narrowed pinch point at the bottom, he doesn't want to operate on anything until more testing is done. He sent me to another GI doctor (same day). The newer GI doctor thinks that I am having a problem of air getting into my GI tract from aerophagia which could be causing some of my issue but not all of it. He thinks there is something wrong with the esophagus as well but doesn't know to what extent. So he is ordering 2 esophageal manometry tests on me. 1 for movement and 1 for 24hrs to see what is going on throughout the day.
There could be some nerves/muscles involved that are causing part of my problem. He still wants me to pursue getting the Dysautonomia figured out and he agreed a rheumatologist is a must.
I have seen 2 more GI doctors. One does surgery on esophaguses and he felt that while the esophagus is enlarged with a narrowed pinch point at the bottom, he doesn't want to operate on anything until more testing is done. He sent me to another GI doctor (same day). The newer GI doctor thinks that I am having a problem of air getting into my GI tract from aerophagia which could be causing some of my issue but not all of it. He thinks there is something wrong with the esophagus as well but doesn't know to what extent. So he is ordering 2 esophageal manometry tests on me. 1 for movement and 1 for 24hrs to see what is going on throughout the day.
There could be some nerves/muscles involved that are causing part of my problem. He still wants me to pursue getting the Dysautonomia figured out and he agreed a rheumatologist is a must.