Molly6O5
Unregistered User
(5/10/04 11:09 am) Reply
MEN1 or 2 or ????
My late husband had MEN1 or 2 or they don't really know. He had a prolactinoma that had grown massively and threatened to cut off the blood supply to his brain. He had surgery and radiation to destroy as much of the tumor as possible. He was then treated with bromocriptine. He also his parathyroids removed, along with kidney stones, etc. However, he developed a malignant pheochromocytoma 5 years later that went undetected for months because apparently it is not usually associated to the pituitary tumor types and it was not causing hypertension. He passed away at age 33. While they told us this disorder would affect his ability to father children, we had already had 2 and another on the way when he was originally diagnosed. His brother has a prolactinoma that has been surgically treated along with his current Dostinex regimen and has not had any other tumors, just kidney stones. None of his 5 children is symptomatic. It is also noteworthy that he had been tested in early adolescence for abnormalities to his thyroid because he was shorter in size than the rest of the family and had not developed any hair growth related to puberty. This was in the early 70's and no clear diagnosis was made. Another brother shows no symptoms. Their father had another variation of MEN, relating to growth hormones, called acromegaly; he also had thyroid cancer, breast cancer, osteomelyitis?, and a host of other disorders.
My oldest son was diagnosed with elevated prolactin levels at age 16 and has been on medication. There have been no signs of kidney stones, he is now 23. My other two children have been monitored but have not shown any early symptoms.
My question to those living with the disorder and those who share their lives with others who live with it is...Have you ever noticed an association with behaviors or temperament as a symptom or side effect? The people I know personally have or did have an explosive personality, that is, any slight trigger sends them into a sometimes uncontrollable rage. I have also noted a disruption in rational thought processes. Does anyone have any thoughts, feelings, impressions on this????
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