I have stopped working and need to return back on disability. It hurts me to do this but my body really can't stand the stress of working. I am a school teacher and have been now for 13 years. All that has come to a stop. I have a nice doctor, she is very helpful but I feel at times she is not being fully up front with me. I find alot of my information on the internet. My sister has MEN 1 with graves disease and now she has a brain lesion with the potential of more disabilty to come into her life. She has had in the insulinomas and part of her small intestines removed. Her body tried to completely shut down. She spent 30 days in intensive care and we almost lost her. She had a whipple procedure done (removal of the pancreas, expect a small portion).
I know now that returning to work having MEN1 will be a great mistake, the body just can't keep up. My ankles and legs swell up and I am scared of congestive heart failure. I also had the piturary adenoma. Let me tell you, that was no fun at all. I had it removed in April of 2000. I still get weird pains in my head and I don't understand why. I had another MRI done and it came back clear with no regrowth. It is a question now that I may also have cushings syndrome if MEN1 isn't enough. I agree that suffering with bone pain is a major complaint. However, it doesn't seem to get any response from my doctor at all. I think I am experiencing a gastrinoma in my stomach now. After a while you seem to figure this stuff out by observing the warning signs your body is giving you. The steriod predisone is a monster because of the weight gain. I have never gain so much weight in all my life. I was given the predisone because I have no functioning adrenal glands they were damage due to the piturary tumor. Keep your chin up. As I watch my sister, I feel she has had the really rough in of it in my family. Now, I see her and sometimes I wonder if I will end up like her. She is slowly slipping away from us and there seems to be nothing anybody can do. I am confused and upset and nervous. I am hoping my social security case will still be open. I simply can't work, but I siimply don't want to be homeless on top of all this too.

I am 27 years old and was diagnosed with MEN1 when I was 16. I got it from my father, who got it from his father. All of my siblings also have the disease, but I was the first to be diagnosed. It can be emotionally trying at times, but I would be glad to answer any questions that I can or just listen when your wife needs someone who understands what she is going through. My email is jillypill@go.com. I was diagnosed with a pituitary tumor and parathyroid tumors at 16, initially going to the doctor because I had never started having periods. I was also very concerned that I might not be able to have kids. There is a WONDERFUL drug called Dostinex to treat the pituitary tumor. I had taken bromocryptine, but it didn't ever work very well for me. Once I started taking the Dostinex my periods started within a week and I was able to get pregnant within six months. I now have three beautiful children. I know that they each have a 50% chance of having MEN, but I know it is treatable if any of them do have it. I have had parathyroid surgery twice and my calcium is still high. I have Zollinger-Ellison which responds well to Prilosec. Last year I had part of my pancreas removed because of insulinomas that caused me to have SEVERE low blood sugar. After the surgery I found out that the tumors were cancerous, but the lymph nodes that were affected had been removed and no further treatment was needed. I know it can be scary, but it is possible to live with MEN and have a very good life if you have good doctors. My grandfather started being treated over 50 years ago - they took out his stomach, pancreas, spleen, gallbladder, and more - and he is still alive and kicking at the age of 83! Just know that there are people out here that understand and will try to help if possible. I don't believe in luck - I believe in prayer!
Jill