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Possible Mircoandenoma muscle wasting

Neuroendocrine Tumors (NETs) | Last Active: Apr 18, 2022 | Replies (20)

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@astaingegerdm

I sincerely hope you get a thorough work up at Mayo. It is very confusing I admit, but as you say - you have something. It’s not too late for you- I know you are very upset about symptoms such as muscle wasting. Once a treatment is found, you will restore lost muscle.
I was looking at articles to help outline the testing needed for diagnosis and treatment.
I found one- a long scholarly one by NIH -from 2015 that at the end gives you a good summary. Look at the end for Executive Summary.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4526141/pdf/nihms-692685.pdf

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@astaingegerdm thank you. My CBC count is starting to show stress on my liver and pancreas (and low creatine kinease, lower lipase and elevated liver I went from normal 15 AST to 40 in less than two months) and experiencing a lot of nerve pain, right now I only have internal medicine and rheumatoid on the books although they are trying to move up endocrinology and I now have neurology in April. By chance I went to ER and have a small bowel thickening that needs to be examined and most GI in FL only do colonoscopies. I’m on a wait list for gastro but they said the list is really long. Time is important now. I don’t know how much internal medicine can order that isn’t department specific… I.e. growth hormone suppression test, or a gallium 64. I may have to fly to Texas (not MD Anderson) to get the gallium approved and then fly back to Mayo if they can’t do it until GI- but not being well and having a 6 year old at home thst needs me- it’s a lot. I hope I can get everything done at Mayo.