I’ve had test after test for vague symptoms of profound fatigue, trouble swallowing, weight loss, and on and on. The last five years I’ve seen gastro, rheum, ENT, neuro, all who shrug their shoulders and tell me I’m fine. Everything comes back negative. I have been saying, « I am NOT fine. » My NP ran a few extra tests this month and 24 hour urine, messaged me to repeat the tests (chromogranin A and 5HIAA) because they were out of range. I’d never heard of these before. Second test the Chromo A had come down considerably, but still 5 points out of range. I don’t know the results of the other test.
So I log on the patient portal in the middle of the night and find a message from a technician that says, « The NP wants you to go to GI because of a possible carcinoid tumor. »
I’m so angry. This is the third time I just happened to see something of gravity, not because anyone TOLD me, but because I happened to come across it. The first two, I found while looking through the pt portal and under « problems » it said, « breast cancer. »
Nobody told me that! Later, I found under « problems » “múltiple sclerosis. » Guess what- I never had either one of those diagnoses. I repeatedly asked them to remove them because I couldn’t get life insurance, but they are still in my chart. I don’t know what to believe now. I’m furious that I keep finding diagnoses, go to the doctor to ask, and they say they just put it in there to get a test paid for. UGHH