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Anyone with Multiple Endocrine Neoplasms gene MEN1 and how diagnosed?
Neuroendocrine Tumors (NETs) | Last Active: Sep 17 9:21am | Replies (15)Comment receiving replies
@rcochran1 I wasn't sure if this reply was to me or not? Seems like you have a lot of moving parts but a solid game plan. Engaging ologists is never a bad thing in my opinion. I have several on my team. I am curious to learn what they have to say. How do you feel about how things are progressing?
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@tomrennie
Hi, thanks for your message; it has helped to hear from folks on this same search for possible MEN 1 gene.
I just received word back on the MRI of pituitary- no lesions found.
So, on the trail of the MEN1 gene, we have hunted down the pancreas [nothing found]; the pituitary [nothing found]; the parathyroid will be further explored after I stay off of Maxzide, a blood pressure medication, for 3 months. Apparently this medication affects calcium levels and they need an accurate reading.
Next week, I will see a urologist to get a read on the "innumerable" small kidney stones and at end of month meet with the genetics counselor.
I now have four specialists at Ohio State University Medical Center and while it is a 90 minute drive, it is worth it to me to have them all in the same system. I have found coordinating care between health care systems is a bit tedious what with linking four different MyCharts and such. Thanks for all the responses and support!