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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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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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
i can see these posts are over a year old so i don't expect this message will reach anyone, but it's what came up when i searched for MEN1, so i will try. I have a friend who has had three insulinomas, two were removed surgically and she is now waiting to have the 3rd removed, it all began 9 years ago when she was 17. No family history was mentioned. This time, her surgery is awaiting the outcome of the MEN1 screen. The surgery will be a full Whipple procedure, which will leave some of the pancreas. It's been close to three months since they drew the blood for the MEN1 screen and she is wondering why it's taking so long to get the result and whether the surgery will be delayed for that. I am wondering if anyone can provide any info about this. Since it's genetic testing, i imagine it can take a long time, but i goolged it and couldn't find any answers yet. She also had an MRI of the liver and after a couple of months is still awaiting the result of that. For something that may be malignant, it sure takes a long time to proceed with treatment.