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I was just wondering if there is anyone else out there that has been told they have M.E.N. I have type one and it is a rare disorder and I have never talked to anyone outside of my family that has it so I am just wondering if anyone else on the website has it.
i've been told yes by some docs and no by others....i have some of the 'criteria' and some i don't.....
my neurosurgeon said that even though they only talk about type I and II there is an Ia & b and IIa & b and others that don't get 'mainstreamed' so to speak.
check www.diseasesdatabase.com and it has reliable links to sites where you can get info...
many of my doctors say my family probably carries men1 on both sides which my moms doc calls a double whammy. this makes me quite worried about my children. i called md anderson because i heard they have a pediatric endocrinologist who is supposed to be treating many patients. his staff and colegues encouraged him to speak or write to me but he never did. i wanted to know specificaly if my children could be tested and what i should tell their docs to look out for as i do not want them to suffer like myself or my father or my cousins because many doctors are completely unaware just how common and under diagnosed it is. i went to a specialist at jons hopkins who i thought would be our savior and he said its so rare there is no expert on it. he swooshed his hand as he said this as if to say "dont even persue it". i ask every doctor i see about it and they all have a different opinion of what it is and some say it does not exsist. so in my spare time i try to gather research from the internet (thats how my sisters saved my life)and i will make a collection and search for a pediatrician who cares. my primary tumor was in my lung. my dads was adrenal and my cousins was bloodstream. u are considered covert until your tumor is found and then u r considered overt. but the neoplasm can occur anyplace in your entire body and be smaller than a spec of dust. sometimes it causes carcinoid syndrome and more info on that can be found at http://acor.org/ or yahoos lungoid forum. the neoplasm can secrete one or several different types of hormones mine had MANY particularly ACTH which caused cushings disease (hypercortsolism). i wish i had more info. i know how u feel. good luck. i'm glad we have this space to share what we find.
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