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Neuroendocrine Tumors (NETs) | Last Active: Nov 11, 2023 | Replies (210)
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I will post as I learn more, hopefully. I am waiting for a phone Consult from the Mayo neurologist I saw last month. Some question whether this is inherited spinocerebellar ataxia after seeing local movement disorder specialist and Mayo neuropthamalogist. However, as my symptoms fluctuate by time of day, I started to wonder if my system was being affected by hormones or other chemicals, especially in the morning.
I had a sigmoidoscopy and endoscopy a year and a half ago at Mayo with nothing found. I will ask the Mayo neurologist if an endocrinology referral Is in order. Thanks.
Replies to "I will post as I learn more, hopefully. I am waiting for a phone Consult from..."
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@sarcomasurvivor It sounds like you are off to a good start. You are asking good questions and really thinking this through. You said in your post that, "my symptoms fluctuate by time of day" and I'm just wondering if the symptoms are worse when you are tired? If so, this is a good point to bring to the attention of the doctors that you speak with.
I'm looking forward to hearing from you again as you continue to search for answers as well as help. Keep advocating for yourself. You are doing a great job!