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Founder of the TransGlobal Health Community Center at http://transglobalhealth.com
My mother has MEN1 an I’m following her path. Not exactally something I’ ;pplomg forward to.
I have M.E.N. 1 and so far so does one of my three children. I would like to learn more about this disorder, what it does to people like us, and I would like to communicate with people who have been through the same problems I have.
I was first diagnosed with MEN Type II in 1987. My father and my grandfather also had the condition. I have had my thyroid and 3 parathyroid glands removed, had radiation for a pituitary tumor and surgery to remove gastrine secreting tumors from my pancreas. I also under went neuro-tharapy to correct the damage caused by the pituitary tumor.
Hi. Just looking to meet other people overcoming the challenges of MEN 1. I had a total pancreatectomy a little over a year ago (due to recurrent gastrinomas and insulinomas) and now I’m trying to live my life as normally as possible. I’d love to hear how other people have made their lives adapt to fit similar medical issues.
My husband found out he had MEN1 a few years ago. It runs in his family. I want to learn as much as I can about the condition so I can help him out as much as I can.
To every one that has questions about MEN, I have been dealing with it for almost 30 years, I was not officially diagnosed with the condition until 1987. Please feel free to post any questions and I will try to answer them to the best of my ability. I recently found some very competent doctors at Brigham and Women’s Hospital in Boston. I have aready sent out a few e-mails to some of you and I hope you will respond.
I am now 69. A few years ago, I noticed some vision anomalies. Since my father had had macular degeneration, I was concerned. Neurological tests and eye checks were done and the neurologist sent me for a MRI. The MRI revealed a pituitary adenoma. The vision problem wasn’t related and was diagnosed as visual migraine. At about the same time, it was noted that my calcium and blood sugar was high. I went to an endocrinologist, had a sestamibi scan and subsequently had 2 parathyroids removed. Went to the Cleveland Clinic, had a genetic test and confirmed MEN1. The pituitary adenoma has stabilized and I am now on a 1-year schedule for another MRI. Had a CT scan for pancreas problems - clear.
The point of my story is that I probably would never have known about my MEN1 without the funny vision, which was completely unrelated.
My daughter was tested and is MEN1 positive as is her daughter. My daughter had a parathyroidectomy many years ago. She recently had pancreas tumors removed and they also took the spleen. So far we are all well and have no MEN1-related problems.
Best of good health to all.
I am 45 y old and from Germany. Some years ago I had one parathyroid removed and some years earlier a benign thyroid tumour removed. Prolactin is little elevated, an MRI didn t show a pit. adenoma. Because of some abnormalities in family and sometimes abdominal discomfort I am under surveillance for MEN 1.
I am always interested in sharing experiences with such a rare and complicated condition and want to be informed better than most of the medical team.
Born in 1966, diagnosed in 2005 now battling fatique, oversecretion of gastrin, PTH and pancreatic polypeptides as well as osteoperosis, joint pain and a very very bad memory I am concerned with my father and sister also battling this rare disorder.
I have found it reasuring to read about fellow MEN-1 people and their storys and I will continue to come by for information and comfort.
I have MEN1 along with my mother, 1 aunt, 1 uncle and probably my sister. My grandmother died from the disease and they think now that at least 2 of her siblings had it as well. I had a complete parathyroidectomy with an autoimmune implant in 2005 and had half of my pituitary removed in Feb of 07 to cure Cushings. I also have 2 tumors on my pancreas and one on my lung and one on my Thymus. I want to learn what others are going through and how they deal with things. With a disease this rare it is hard to find a Dr. that is aware of it let alone that knows everything about it so I like to go in with as much information as I can.
Hi from Spain!
My husband and our two sons have MEN.1,so here we are trying to cope with several problems,and I hope to find people to talk about their progresses.(sorry about my bad english;-) )
I send you all my regards and good wishes to go on and find a way to improve health.
Men1 Patient, Diagnosed in 1995. 2 Parathroids removed Jan 2006. Doing Fine. Located in North Buckinghamshire - UK
Hi, my name is Ashley and I have not “officially” been diagnosed with MEN1 and no one in my family has ever had it, but I have had several episodes, so to say, with insulinomas and parathyroid tumors. I am not officially clean of all tumors and doing great but being watched by my team of doctors for any new or upcoming tumors.
My 60 year old husband and 26 step-daughter have MEN1. They both have had para-thyroid and pancreas surgery. My husband has had lung carcinoid removed with positive lymph nodes. He has bone mets in spine, rib cage and hip…currently having radiation to deal with rib and hip.
Hi everyone,I don’t have NEM1 but my husband did, Inursed him through all kinds of things for over 20 years, now we find that my son has it and also his youngest daughter. hehas had his para Thyroid glands removed but that’s all whereas my grandaughter has had two thirds of her pancreas removed,they are under the team which includes a consultant in genetics at the Royal Hallamshire Hospital in Sheffielld Yorks. They sent for my husbands notes from our local hospital like us most people have never heard of it.
My son and i have MEN 1, ans i am intersted in hearing others feelings on DRs and procedures to help with all aspects of this disorder. My son has had one parathyroidectomy. Hope to hear from anyone that can help or i can maybe help… Thank you
My husband’s family has MEN I. We are now in the 5th generation. Our 8 year old grandson has just been diagnosed. My husband had pancreatic cancer 8 years ago, but his was encapsulated (5% chance) and has been healthy so far. We think my husband’s grandmother probably had it, and know for sure his mother and her brother, my husband’s brother and his daughter, our daughter & son and now our son’s son. My husband’s uncle (in his 40’s) and niece (31 yr.) died of pancreatic cancer. They all had some or all of the conditions that associated with MEN I, like parathyroidism, kidney stones, tumor on pituitary & etc. Would like to hear from other families with this condition.
I am currently being tested for M.E.N. I have pituitary Cushing’s and hyperparathyroidism.