Sunday, March 11, 2012

Multiple Endocrine Neoplasia Syndrome

Multiple endocrine neoplasia, type 1 (MEN 1), sometimes called Wermer's syndrome, is a rare disorder that causes tumors in the endocrine glands and parts of the small intestine and stomach. In MEN 1, the endocrine glands — usually the parathyroids, pancreas and pituitary — grow tumors and release excessive amounts of hormones that can lead to disease. However, the tumors are usually not cancerous (benign).
The excess hormones can cause symptoms such as tiredness, bone pain, fractures and kidney stones, as well as stomach or intestinal ulcers. Although MEN 1 can't be cured, if regular testing detects problems, doctors can provide treatment as needed.
MEN 1 is an inherited disorder, meaning people who have the gene mutation can pass it on to their children. Each child has a 50 percent chance of inheriting the disorder.

        I was diagnosed with this rare disease two years after my Acromegaly diagnosis....Again, on my birthday! I guess I was not as devastated with this diagnosis because I was still numb from the acro diagnosis two years earlier. As I became more sick over the years the endocrinologist began to question rather or not there was more going on with me.I had symptoms that did not coincide with Acromegaly. She sat me down and asked me, what seemed to be a thousand questions, but I am sure it was not and there was no way humanly possible for her to ask me 1000 questions in 15 minutes, the maximum time I was allowed for a visit. Questions answered, tests ran...." You have Multiple Endocrine Neoplasia Syndrome type 1, it is a very rare and serious disease" Great! If one does not do me in than the other will.
The basis for my diagnosis this time. The three P's are affected..Pituitary (Acromegaly), Parathyroid (hyperparathyroidism), Pancreas (diabetes 2 and hyperinsulinemia).Basically your entire endocrine system becomes affected and pancreatic cancer is very common. Some of the symptoms I had been experiencing that the doctor felt were more fatigued than the usual fatigue, sensitivity to hot/cold. Summer time I wore hoodies and winter, my kids froze while I was cozy in a tee. Also, began having alot more GI issues than normal, kidney stones frequently, nausea,weakness and the onset of Osteoporosis...often felt like I had a horrible flu as well. In my earlier years I had endometriosis and polycystic Ovarian Syndrome as well. All related, now I know.
There is not anything that can be done specifically for MEN1. It is just constant monitoring, tumor searching, lab testing and treating the symptoms as they arise.

http://en.wikipedia.org/wiki/Multiple_endocrine_neoplasia_type_1

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