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What am I missing? Possible NET?
What am I missing?
I have been feeling sick for 7 months, basically life has stopped. They have done many many testings on me and finding nothing. Here is a few below. Any advice on what missing And what should do? Do I accept there is no NET? The doctors seem to be done with me. All tests look good.
CT Lungs
CT abdomen and lungs
Heart MRI
Brain CT
Abdominal MRI
MRCP - pancreas mri
Pet scan - Doctate 68
Pet scan - 18FDG
CGA blood test
VIP blood test
Many other blood testings
Infectious disease blood work
Been tested by Endocrinologist, heart doc, my GI here are Duke isn't great ended up at Mayo Clinic for most test.
My symptoms are fatigue, hot and cold sweats throughout the day, tingling in arms / legs, ears ringing, headaches, feel like when stool is in my intestines it fires up my symptoms more in other words I go to restroom immediately waking up and feel better for a little bit, bloating off and on, dizzy hard to drive and or go out in public, Bottom line feel bad most of the day.
Thank you for also me advice
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NETs can be missed I believe as they can be tiny but I would expect the scans and blood tests would have found something . I am sorry you are not finding out the cause . I would keep a food diary and eliminate any foods that make you feel worse if that is possible
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1 ReactionMy goodness, you’ve had the mother load when it comes to testing. I met the benchmark as far as biochemical testing; my epinephrine and norepinephrine levels were quite elevated, but not 4 times the upper limit of normal, but that is not as relevant if the patient has what is called, the triad of symptoms, which I have always had for the last 30 years. At first my symptoms were infrequent, maybe a spell every three or four months, but then they became more frequent. That’s most likely due to the fact that the tumor has increased in size. I can’t even bear down when toileting or I will have an “attack”. I could speak at length about these elusive but powerful little tumors, but at 71 I’m tired of the whole ordeal. I haven’t had anywhere near the number of tests/imaging studies that you’ve had. I’ve 2 abdominal mris, 1 FDG study done in 2017, and 1 copper64 Dotatate scan in 2023, and an abdominal mri in April 2024, and a pelvic mri in June 2024. They were all negative. But I refuse to believe that just because they were negative I don’t have this tumor, because I have the triad of symptoms, and that should carry a lot of weight with any evaluating clinician, unless they’ve been living under a rock. I was even told by one doctor at the beginning of the year while I was being observed in the ED with yet another spell, that my father (died in 1988 suddenly) most likely died as a result of pheochromocytoma induced stroke or heart attack. In other words, many people die as a result of these tumors without ever knowing they had one.