MEN1 2014

[@suzysmith4254]

I was denied genetic testing and am now suffering with debilitating symptoms and it really sucks it really does. God bless you all dealing with this awful disease

[@Dreamsters]

I've had a recent diagnosis of MEN1. My grandfather, mother, and uncle have all died from it. I am only 30 years old but I am terrified. Being an American with no affordable health insurance I am not seeing any reasonable way to tackle this. Any info would be very appreciated.

[@eryberrie]

I've just been diagnosed with this and it is very scary. Still awaiting tests and results of some tests I have had.

[@AMEND3]

We always recommend a visit to our website if you need any more information - always happy to help: www.amend.org.uk/patients/information/men-1/

[@sharonsmith4659]

How are you? I haven’t been diagnosed but I’m under suspicion of men1. I had a prolactinoma, my dad had a gastrinoma, my sister had a parathyroid adenoma.

[@anusree8905]

@@sharonsmith4659 How r u? I am under suspicion too. I had parathyroid adenoma. But no one in my family is diagnosed of having any other disease yet. But doctor doubts there is a chance for MEN1. Its a little bit scary. How r u doing now? Have u done any blood test or something for screening?

[@messianichebrewshawnkawcak1550]

I have had MEN 1 for at least 30 years. The big thing is just keep up with medical issues. I had the parathyroid surgery, which is pretty easy. I am facing surgery on my pancreas now, just had my pancreas biopsy yesterday.

[@IxXSentinelaXxI]

Sorry my english isnt well: I have very high prolactin and testosterone (symptoms because of that)and maybe cushing syndrom.im always tired and have bad memorie and cant concentrate.and i have a cystic pituarity.soon i have the meeting with the doctor an the special investigations. im afraid if i have the same.how can i be sure if they make the investigations in detailed way?what if i have men 1?

[@coleramus561]

Imagine having a disease like this and living somewhere else, like Uganda or America, where the medicine is total crap. You'd go years without a diagnosis or treatment, and you'd probably die young and in misery.