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phoebeghostwriter (@phoebeghostwriter)

Possible Mircoandenoma muscle wasting

Neuroendocrine Tumors (NETs) | Last Active: Apr 18 6:28pm | Replies (20)

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@phoebeghostwriter

Hi there! So glad to find this group. I’m 43 years old mom and frustrated by my local help. I first had stomach issues back in late July and they thought it was IBS or GYN issues causing night sweats and weight loss. Then at the end of October I had a storm of symptoms start and progress. I have started muscle wasting and experiencing MS like symptoms and joint pain, back pain and low sugar. I had a MRI with a questionable mircoandenoma with conflicting opinions and signs of a NET endocrine tumor. The night sweats won’t let up and they started testing for Cushing because my cortisol and testosterone was high. I will have new labs Monday but I fear I can not endure more testing weeks at a time as I am getting weak feeling worse each day. It’s crazy that I was healthy and now arthritis, joint pain extreme fatigue erratic low sugar . I submitted a appointment request. Does anyone know if Mayo accepts you, how long until you may be seen for further diagnostics? Anyone else have a similar story?

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Replies to "Hi there! So glad to find this group. I’m 43 years old mom and frustrated by..."

Hi Phoebe, welcome. This sounds like an incredibly frustrating search for answers. Endocrinology issues are notorious for being difficult to diagnosis. @hopeful33250 and @astaingegerdm can emphathize as they too are familiar with searching with doctors for answers related to neuroendocrine tumors, Cushings and more.

First, to answer your question about Mayo Clinic. I encourage you to enquire about getting an appointment. Here is more information about how you can self-refer or have your endocrinologist apply for a second opinion: http://mayocl.in/1mtmR63
You may be eligible for a video consult to start.

If you can, please get the additional labs done and be sure to have copies of all your testing for further consultation. When is your next appointment with your endocrinologist? Perhaps we can help you create a list of questions to ask.

  Request Appointment