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Recently diagnosed with MEN1

Posted by persevere76 @persevere76, Jun 14, 2024

I was recently diagnosed with MEN1 and my local Endocrinologist has referred me to Mayo. I am waiting for a call on when my appointment(s) will be. I would like to know if anyone with MEN1 has had an adrenal adenoma and what treatment you had for it.
Thank you and blessings to all the warriors fighting this battle!

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matt2024 | @matt2024 | Aug 4 9:02pm
In reply to @mk1124 "Hi @matt2024 - nice to meet you as well. Thank you for reply and the link..." + (show)
Profile picture for mk1124 @mk1124

Hi @matt2024 - nice to meet you as well. Thank you for reply and the link to the AmendUSA website. I didn't see resources for doctors. I will continue the search as there are no multidisciplinary clinics in my area.
-mk1124

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When I started my search, I spoke with Mayo and Cleveland Clinics and chose the latter since it is about only 2 hours away from me. It might be worth reaching to them (or MD Anderson, Penn, etc.) to get a treatment plan. Most of my appointments are virtual follow ups with occasional scans, blood work, etc. that can be done locally.

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