Mother might have neuroendocrine tumors, is being told she has IBS
Maybe this is rant post, but my mom aged 56 has been having diarrhoea and flushing since past 7 months and I’ve seen three gastroenterologists, one endocrinologist and one medical oncologist with no avail other than it’s just ibs.
They did one cect abdomen in June, two times endoscopy and twice colonoscopy and one fdg pet ct with all normal study. But the twist is her nodes in abdomen, chest and neck are enlarged, not big enough to biopsy apparently and they are fine with it because it didn’t show activity on fdg pet.
My mom almost landed up in sepsis during one of these watery diarrhoea episodes, was admitted in ICU this September and discharged after her blood pressure was above 100/70.
These diarrhoea episodes are associated with nausea, cramping, epigastric pain, joint pains and first it starts with increased stool frequency with full blown watery diarrhoea.
They still refuse to get atleast the 5hiaa and chromogranin test done saying even if 5hiaa is marginally elevated we will just end up in a wild chase for it and they make it seem like it’s super impossible to catch. A lot of people who live long with it also seem younger. Are there any older survivors of the disease? Also i live in India there’s no one called net specialist:/