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@dlydailyhope thank you so much for sharing. This makes me feel like I'm not alone in this, and I hope the same for you. I will talk with my gastro next month about the HIDA scan. I have had liver workups in the past that were basic and normal, not sure about my gallbladder. I just ordered an extensive liver/gallbladder test online though, which will break the bank, but I feel like I have to look out for myself at this point. I have not had a fiber punch done, will discuss that with my rheumy when I find one. The last one I went to told me everything was from sitting wrong on my couch while working on my laptop. I stopped doing that though, and unsurprisingly had no improvement. My primary thinks I have fibro, and has for a long time, but I'm not convinced. Most of my pains center around my gastric system. Anyway, thanks for writing, and keep me up-to-date on how you're doing, and I'll do the same!
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@supernat10
Have you had a colonoscopy to check if colon is causing any issues? Endoscopy can check esophagus, stomach and duodenum small intestine but your colon is right at the bottom of your liver/gallbladder/pancreas and stomach. In addition to these exams not sure if there are other functional test that could be done to determine root cause of your gastro/abdominal pain.
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@supernat10
You are definitely not alone!!! We are here to help each other to fill in the gaps of support for those with chronic, complex illness.
You will want to have your neurologist do the small fiber neuropathy skin punch biopsy. They took a very small skin sample at top of thigh and calf of the same leg. It showed I had significant nerve damage/loss and was considered idiopathic because at the time they did not know what caused it. SFN could be causing autonomic nervous system dysfunction for you. My journey has been 7+ years trying to get answers and diagnoses and can be exhausting and expensive, that is for sure!
My gastro did bloodwork and abdominal ultrasound and both were normal. Despite taking omeprazole for gastritis for some time and stopping NSAIDs/ibuprofen, I still had pain near my liver and across my lower chest/upper abdomen. The HIDA scan showed visually my gallbladder function which was 7% when it should be a minimum 35%-40%! It basically just stopped working. I see the surgeon today to discuss removing it.
https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/symptoms-causes/syc-20369829
https://my.clevelandclinic.org/health/diseases/17479-small-fiber-neuropathy