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MEN 1 questions

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MEN 1 questions

Post by Amanda Lynne on Wed Jul 02, 2014 7:26 am

Does anyone know if you have more than one Endochrine tumour it automatically means you have MEN1 ?
Amanda xxxx
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Re: MEN 1 questions

Post by pilipala on Wed Jul 02, 2014 7:36 am

Since it's genetic I would expect you to need to be genetically screened before they confirmed the diagnosis.

I think there's a support group for MEN which I found when researching my symptoms. Definitely worth asking them for advice.

Hope your symptoms improve 

Dee x

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Re: MEN 1 questions

Post by pilipala on Wed Jul 02, 2014 7:41 am

Here's the website, lady in charge is based in Kent so you could give her a ring.

http://www.amend.org.uk/about-us/contact-us.html

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Re: MEN 1 questions

Post by Amanda Lynne on Wed Jul 02, 2014 7:46 am

Thanks Dee
I'm more worried about the implications for my Children.
Amanda xxxx
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Re: MEN 1 questions

Post by pilipala on Wed Jul 02, 2014 8:08 am

Have you thought about pre-test genetic counselling?

My friend's son has a genetic disorder and I know the main worries are about the implications for the future and the rest of the family. So many unknowns. A good genetic counseller may be able to answer some of those questions for you.

Dee x

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Re: MEN 1 questions

Post by Amanda Lynne on Wed Jul 02, 2014 9:04 am

Yes I've thought of that but I don't want to start anything until I get yes or no from this glucose test next week. I hope I get results quickly.
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Re: MEN 1 questions

Post by Amanda Lynne on Wed Jul 02, 2014 9:05 am

Yes I've thought of that but I don't want to start anything until I get yes or no from this glucose test next week. I hope I get results quickly.
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Re: MEN 1 questions

Post by Kathi209 on Wed Jul 02, 2014 4:51 pm

Amanda the genetic test you are having done for FHH are they going to also test for MEN1 ?  Yes I can see where you would worry that your kids could also carry the gene. Best wishes to you.   Kathi

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Re: MEN 1 questions

Post by Amanda Lynne on Wed Jul 02, 2014 5:04 pm

Hi Kathi
No they aren't at this stage, I have to get glucose suppression test done first but as soon as I have had that done I will email Endo saying that if possible while they have bloods hanging around for the 3 months !!! Maybe they could test both.
Doesn't seem unreasonable does it !!!!!
I wouldn't be so worried if I didn't have this awful pain in my head.
Amanda xxxx
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Re: MEN 1 questions

Post by Tigerlily on Wed Jul 02, 2014 7:16 pm

Sorry head is still painful, Amanda.

Look up Multiple Endo Neoplasia on www.patient.co.uk pages and you might find the answer there. Lots of stuff on the genetic side on the professional pages (not just the simple patient ones).

Doing my thesis (nearly put 'testes'!) for tomorrow at Addenbrookes - back tomorrow night if I'm calm enough!!

No, doesn't seem unreasonable - get the nurse who takes the blood to put a note on the bottle to that effect as well.
Belt and braces ....

Lots of Love, T-L xxx

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