Discussions By Condition: Rare Disases

Hi My name is Pru & my Sons Name is Zec we have MEN tpye 2A & 2 B

Posted In: Rare Disases 3 Replies
  • Posted By: Anonymous
  • August 1, 2006
  • 09:55 AM

Hi my Son & myself have MEN2A & 2 B
We live in Melbourne Australia. I am 48 years old & Zec is 15 years old.
I have had my thyroid removed & 1 adrenal gland & am doing realy well.
Zec had his thyroid removed at age 5 as a preventertive Zec had hypercalcimic & had a parathyroid removed 12 months ago his calcium levels now are good.
We both have had hirshsprungs disease which I believe is part on this disease.
I would like to comunicate with other like myself.I am adopted so a family history is somthing i do not have.

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3 Replies:

  • Hi Pru,My name is Jo Ann. I'm always looking for any information I can find about MEN. My niece was diagnosed when she was 19 (she's 26 now). She had to have her thyroid removed and 2 parathyroids. Her dad had it too but we didn't now that what he had was genetic and that his children would have a 50/50 chance of inheriting it. Her dad passed away at the age of 48. His thyroid was removed when he was 27. I'm not sure that he had a MEN diagnosis at that point. It wasn't until my niece was at the point of surgery that we were told the thyroid should have been removed as a preventitive measure. She has been doing well since then, although she occasionally has emotional outbursts. The doctors say it's unrelated but I disagree. If her adrenal glands are involved it would stand to reason. She gets tested every 3 months to regulate her medication and she has been told she has pheochromocytosis but does not need surgery at this point.I think it's good that your son had the thyroid removed early. We're told that slows everything down. I hope you are both doing well and would love to know if there is anything being done differently in Australia than here in the States. She's in NJ. Take care, Jo Ann
    libra1252 1 Replies
    • October 7, 2007
    • 11:25 PM
    • 0
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  • Hi Pru,My name is Jo Ann. I'm always looking for any information I can find about MEN. My niece was diagnosed when she was 19 (she's 26 now). She had to have her thyroid removed and 2 parathyroids. Her dad had it too but we didn't now that what he had was genetic and that his children would have a 50/50 chance of inheriting it. Her dad passed away at the age of 48. His thyroid was removed when he was 27. I'm not sure that he had a MEN diagnosis at that point. It wasn't until my niece was at the point of surgery that we were told the thyroid should have been removed as a preventitive measure. She has been doing well since then, although she occasionally has emotional outbursts. The doctors say it's unrelated but I disagree. If her adrenal glands are involved it would stand to reason. She gets tested every 3 months to regulate her medication and she has been told she has pheochromocytosis but does not need surgery at this point.I think it's good that your son had the thyroid removed early. We're told that slows everything down. I hope you are both doing well and would love to know if there is anything being done differently in Australia than here in the States. She's in NJ. Take care, Jo AnnHi my name is Stacy, and I was diagnoised with MEN2B when I was 8. That was after my mom was finally diagnoised after years of misdiagnoises, she died 4 yrs later when she was 36. I was diagnoised with my first Pheo at the age of 19, and a recurrance of the cancer and pheo when I was 28. I am now 32, and do pretty well, but am not cancer free.What caught my attention in your post is the fact that the drs are not doing anything about the pheo. I am curious about why that would be? Both times I had a pheo, I felt horrid and the first time, I just praise the Lord I didn't die of a stroke from the high BP. Trust me the symptoms will only get worse, not better. The headaches, high BP, night sweats, hot flashes, heart palpitations, and visual effects do not get better. Please get a second opinion if they have not operated on your niece for that pheo yet. If you have any questions please let me know, and I'll try to answer. I just found this board and haven't regisetered, but will if you want to email. Stacy
    Anonymous 42789 Replies Flag this Response
  • Hi, my name is john and i have MEN IIb. It's apparent these discussions occured over a year ago, but if anyone with MEN IIb reads this i would really like to chat with you. so if you could leave some kind of contact info or something. Ill check this periodically. im at jcollins0918@gmail.com
    johnny water 1 Replies Flag this Response
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