hi everyone. my father had meni and zes. i’ve had yearly screenings since his diagnosis, but have been considering genetic testing lately. any info that you have on pros/cons of genetic testing would be grateful. also, if you know of any signs/symptoms of meni or zes, please share. thx.
I’m glad to hear of others who are going through some of the same issues that I am. I haven’t been officially been diagnosed with MEN1 via genetic testing, but I don’t even need to in order to tell that I have it. It seems that I am the first in my family as there isn’t any of these problems in my family that I’m aware of.
I have had 3 and 1/2 of my parathyroid glands removed due to hyperparathyroidism which caused very painfull kidney stones. I’ve also had much of my islet of my pancrease removed and scraped out due to tumors causing increase in pancratic polypeptide. I’ve also received notice of microadenoma on my pituitary.
I’m 26 years old with symtoms starting when I was 19. I can’t imagine goign through my entire life having to deal with multiple surgeries for this disease and am a little depressed with the situation.
I know what you mean about depression. My family not only takes turns keeping on eye on me, but they have me on medications to help with the depression, the pain and the sleep deprivation. Sometimes I am in so much pain, I just can’t stand it. And where I live, there are no doctors to help me, the only thing they can do is give me more pills. Everyday I say to myself “It will get better, someday” To everyone, hang in there! I know sometimes it’s hard but you can do it and always remember you have friends and family who love you.
hello, I am a 34 year old female, I was diagnosed in 2001 with MEN 1 after my mother’s passing due to a late diagnosis of MEN 1 (lungs and major organs calcified due to hyperparathyroidism). I have had 2.5 parathyroid glands removed, and currently have a prolactinoma and 2 very small pancreatic tumors. I would love to hear from anyone about how they live with this condition. thanks.
37 year old female, diagnosed in 1983 with MEN1 after my father passed away as a result of metatstatic neuroendocrine cancer of the pancreas as a result of MEN1.
I had a partial parathyroidectomy in 1988 and had the last glad removed and auto-transplaned in October 08. Never felt any side effects of the elevated calcium levels though I do have very small kidney stones and slight osteopenia. The auto-transplanted gland has not really “kicked in” so I am on Calcitriol and calcium supplement.
Discovered 4 well differentiated tumors in my pancreas (gastrinoma)and underwent total pancreatectomy at Mayo Clinic in Jacksonville, FL in December 08. Recovery from this surgery is going very well all things considered.
I have a 5mm adenoma in my pituitary but am in a wait and see stage.
My sister, who was 8 years older, passed away from metatstatic neuroendocrine cancer earlier this year. My brother is currently dealing with all 3 issues and prioritizing which surgery to have first.
hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.
Life is about health, family and friends, but sometimes its hard to keep focus on what is most important
I live in the northeast and suffer from seasonal depression. I basically hibernate from november until april. Besides moving, I’d really like to talk to people about how they’ve conquered their depression. I’m a really cynical person and depression has got me beat 