hello, i have been diagnosed with men 1 and brca 1, my ...

1. Guest 1 February 2006 at 14:32PM
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   hello, i have been diagnosed with men 1 and brca 1, my health has deteriorated, i am tierd, and feel weak most of the time, i have bone and muscle pain, chronic diarrhea,which has been for 14 months now, i have lost a lot of weight, i have a vitamin d difficancy,,have been told having these faulty genes is very rare and not previously recorded in europe, and seconary hyperparathyroidism, .my quality of life is not so good,it seems my interest is more to the research side than helping me, i found the info on your pages rather interesting, and answered some questions for me, i feel more wise to men 1 than i have , unfortunatly for me im still battling to find a team of drs that don't contridict each other ,and confuse me, to what to believe, but your pages explained much, to my understanding, thank you

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2. Guest 6 June 2006 at 15:43PM

   Hello

   I was diagnosed with MEN1 about 15/16 months ago. Since then I have had a total parathyroidectomy, MRI scan (results were fine) as were the pancreatic tests. My 26 year old son has recently been diagnosed with MEN1, fortunately no symptoms. Which hospital did you attend? i find my team of consultants excellent to deal with, maybe they could help you? You may contact me off site if you so wish.

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3. delboy79 30 May 2012 at 13:13PM

   i am 32 and i have been diagnosed with men1 and brac1 my doctor never seems to want to help he even said i have to chase up all my referals my self im a dad of 3 children and im scared that i wont be roumd for them as i should be i found out when i was 26 what i had i try to talk to family about it but they just dont want to i feel so low and some time i just want to walk out my front door and not come bk its as if i have rabis if any one can exsplain what it realy is it would be a great help im the youngest out of 5 children and the only one that has it

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