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Anyone else with a diagnosis of MEN-1?
Neuroendocrine Tumors (NETs) | Last Active: Jan 12 11:54am | Replies (6)Comment receiving replies
Wow! And have you been seeing doctors at the Mayo Clinic? How has that been for you? Anything you can share? I am so sorry to hear of your youngest. Mine will complete her nuclear scan next month to see how many parathyroids are causing the issues and then we will go from there. She will be coming along with me next month to Mayo as I tihnk at this point it is only beneficial for her to hear all of the things that come with MEN-1.
I too am very happy to be hear but I will not lie and say so many days are so so hard and I just want to feel even half normal. These days it is mostly the stomach issues that are causing me the most issues and making things unbearable. The headaches have gotten better since starting the Caborgaline again and my prolactin levels have started to come down. Well wishes to you!
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@katydurgin I am sorry to hear about the stomach issues. I haven't experienced any of that - just when I was getting my Creon enzyme dosage dialed in. I have been treated at Cleveland Clinic and see several doctors there for the various maladies that come along with MEN1.
I did not know originally that the pancreas tumors were NETs and related to MEN1 so I figured I was a goner back then. I do count every day as a blessing and think my MEN1 was found so that my youngest could be treated and followed much earlier than I was able to be. I get yearly scans and tests and all of the anxiety that comes along with that. It's one day at a time and we keep moving forward.
Well wishes to you and your family as well. Let me know if I can add any more info for you.