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Jodele

M.e.n. Syndrome

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My mom called me yesterday and was frantic. She went to her endocrinologist and he told her that he thinks she has M.E.N syndrome. What I read about it is that it hits any gland in the body and makes tumors in them. It is genetic so my sister and I most likely have it. Both my sister and I got Graves's disease when we were 30 and I have celiac. My sister has it too but don

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Wowzers! This must be really shocking and upsetting.

I found this very informative website (in plain English, not "medical-ese").

www.endocrineweb.com/MEN

This looks very serious -- but not a death sentence; you need to become very in tune with your body and get checked a lot. It seems like a relief that "they" (medical community) know a lot about this condition so you should be able to get a lot of support. Good luck. Keep us posted.

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Also, I think you and your sister should get tested ASAP because there's "only" a 50% chance you have it if your mother has it. Better to know one way or the other, rather than worry about the "what if..."

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Jodele,

Don't know if you've seen this web site, but it has some information on M.E.N. syndrome, as well as some links to other web sites:

http://www.parathyroid.com/MEN-Syndrome.htm

Also, there's a rare disease database online you could check out that might have something helpful:

http://rarediseases.info.nih.gov/

Good luck to you & your family!

Martha

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Thanks for responding to me. My mom is going to get her results tomorrow. Her doctor did not want to discuss it over the phone and wanted to see her in person. lol. Yes my sister and I are going to be tested as soon as my mom is dx with it. We all believe that this is what is wrong with her. It's just strange that my sister and I both got graves disiase when we truned 30. thanks agian for the web sites that you found. Will post what my mom finds out.

Jodele

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