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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!

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Replies to "@tomrennie Hi, thanks for your message; it has helped to hear from folks on this same..."

@rcochran1 Wow, you have a lot going on. But, it can be quite the process. I understand keeping the members of your team in one health system. That's one of the main reasons that I am with Mayo. Whenever I meet with a new specialist, he or she already has all of my records and usually has a working relationship with my other doctors. It makes the communication seemless without my involvement. That's why I will be making a 90 minute drive myself to Mayo on Monday. Please keep me posted on your progress ok?

@rcochran1, you may also be interested in these discussion in the NETs support group related to MEN1. https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

You can use the group search to find other related discussions.