Hi ,
Is there anyone out there in YA who has MEN, Type 1, or a doctor that can give me some involved information?
My question is about Wermer's Syndrome, or Multiple Endocrine Neoplasia Type 1. I have had two doctors tell me that I definitely have it; two tell me that I don't have it; and one tell me that he doesn't know.
I have a pituitary microprolactinoma, and have had a parathyroidectomy, but if there are pancreatic tumors, they have not yet shown up on scans. I was told that I don't have MEN, type1 because of this. I have also been told that I do have it because I have all the symptoms of pancreatic tumors. The doctor said that tumors are probably microscopic and haven't shown up yet, and its better that way. The slower they grow, the better off I will be.
What are the symptoms that I can look for? I cannot afford DNA testing, and my insurance won't pay for it. I need to know some symptoms that can be readily seen in my everyday life.