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How many of us are there...

Discussion in 'MODY' started by kierbabi09, Sep 20, 2008.

  1. kierbabi09

    kierbabi09 Approved members

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    on here that have MODY? Well actually I don't know if I do have MODY yet, I'm still waiting for reasults. I know there is maybe me, Jess, a new family (i think) and maybe 1 or 2 other people that don't post often.
     
  2. Mody_Jess_Pony

    Mody_Jess_Pony Approved members

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    I'm here Jess MODY 3 confirmed gene testing :)
    I am an alien :)
     
  3. lilgsmommy

    lilgsmommy New Member

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    My 6 1/2yr old son has MODY 2. I dont ever post in the forums, just go into chat alot.

    Now that we have an area I will be posting more :)
     
  4. kierbabi09

    kierbabi09 Approved members

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    Welcome to CWD:)
    I know that having MODY is not the easiet thing to have OR explain. There are I think 3 of us on here, or so, but I think that most of us have MODY 3.
    I don't know yet if I have MODY and what gene, but hopefully I will know soon:(
     
  5. CeeJay

    CeeJay Approved members

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    What led you to look for MODY diagnosis?

    My son is 6 months after dx now and needs very, very little insulin. It has us asking all kinds of questions!

    Thanks for sharing : )
     
  6. kierbabi09

    kierbabi09 Approved members

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    I started out on pills, then after 2 years I started out on 1.5 units of Lantus and now my TDD (total daily dose) is around 35 units but my c-peptide level was 3.1, which I *think* was normal. So who knows.
    But I hope that you figure everything out for your son and soon:)
     
  7. shirley83006

    shirley83006 Approved members

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    ?

    what is mody?
     
  8. kierbabi09

    kierbabi09 Approved members

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  9. Alba37

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    Hi everyone! :)

    My son is waiting on a genetic test.

    I was wondering if those of you with MODY can tell me what your family history of diabetes is like?

    We were told for Marc (my son) to have MODY there would have to be a close relative with Type 1, which there does not appear to be. 2 1/2 years since diagnosis they have decided to go ahead with tests now anyway. We are still waiting to find out when, so reading here we still have a very long wait even after tests are taken. I'll keep you informed.

    A x
     
  10. Mody_Jess_Pony

    Mody_Jess_Pony Approved members

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    Heavy on the T2 side here. But no. I haev no one with type 1 on either side of my family. It is genneraly passed on through the female and can be carried as a recessive gene and because it's monogenic(you only need 1 gene to get it) the gene would be dominent in the child with MODY.
    The 10 months was my fault I didn't ask for teh results(asumed I'd be told) so it may not take that long but I am very Rural and my results had to sent away out of province I think.
     
  11. Alba37

    Alba37 Approved members

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    Thanks for your reply. That's interesting, we are also very heavy on type 2. I have no idea if it's MODY Marc has, but best to find out one way or the other. Both consultants here, seem to think there should be a close Type 1 relative, weird! (and worrying!)

    We still haven't heard when the test will be done, he's been reffered to another hospital for the test. We are in Scotland and I believe the tests are sent to England. We have a hosp appointment next week for other results so I'll ask what's happening then.

    A x
     
  12. kierbabi09

    kierbabi09 Approved members

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    Hey I'm Kiersten and I'm 17 years old and waiting on my MODY results too. I have had diabetes for almost 3 YEARS and still don't know what type I have, so I'm in the same boat as you are. I hope you find out soon though!
    Both my paternal grandparents have type 2 and my great grandmother had diabetes and her dad had it also. My maternal great grandpop had pre-diabetes so it really runs in my family.
    In the beginning
     
  13. sofaraway

    sofaraway Approved members

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    Haven't been online for a while, excited to see this MODY forum!

    I have MODY 3- genetic test confirmed. I was diagnosed with diabetes in 2000 when i was 15 and confirmed a couple of months later that it was MODY.

    My brother, mum and grandad (his sister and some people down that side of the familt too) have MODY. we were the 13th family in the world to be discovered with it.

    I control my diabetes with insulin, started out on diet, then tablets then insulin as my diabetes has progressed.

    If you are in scotland then your results will liekly have go to Exeter to the MODy research labs there. I went there last year and they are cool people. You can email them if you want they reply pretty quickly in my expereince.

    There doesn't have to be a relative with type 1. It's just that MODy is most usually misdiagnsosed as either type 1 or type 2. so it wouldn't be unusual to have someone in the family with apparent type 1.
     
  14. Alba37

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    Thanks Kiersten & Nikki for your replies. So there really doesn't need to be a close relative with type 1 at all. (I'm getting very concerned with our consultants! :mad:)

    Yes, Nikki, they did say tests would be sent to Exeter, mmm, just wish we'd hear when they are to do done. How long did your results take to come back? Thanks for letting me know they are nice people at Exeter, I could do with some of them just now!

    Good luck with your results Kiersten, let us know how you get on. Marc is the same, he was diagnosed in April 2006 and still doesn't know what type he is.

    Can I ask another question? With MODY do you find phases of highs and phases of lows? It's like he produces insulin some times then others it seems like less. It's very hard to get a balance. He's on Latus & Novarapid.

    A x
     
  15. kierbabi09

    kierbabi09 Approved members

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    What is you sons TTD (total daily dose)?
    I started out on 3 units, then 1.5 units of Lantus and that was IT. Now I'm on almost 40 units daily, lantus and Humalog.

    Good luck to you and your son also. I hope that you and your family finally get some answers. Believe me, I know what it is like not knowing, being confused and in away being left out. One word of advice: JUST BE PATIENT!! Good luck and YOU let US know how it goes for you.
     
  16. Alba37

    Alba37 Approved members

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    Hi Keirsten,

    Thanks for your reply. It changes each time he goes to the hospital. Cause of the phases of highs and lows he gets. Just now he's up to 20 units Lantus & and approx 18-22 units novarapid, (I presume it must be similar to humalog) throughout the day.

    Thanks for the good luck, I'll definitely let you know how it goes. He feels just like you said "what it is like not knowing, being confused and in away being left out."

    A x

    P.S. thank god he doesn't get time of the month! Although it does feel like it sometimes!! :eek:
     
  17. Alba37

    Alba37 Approved members

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    Forgot to wish you luck for today, Kiersten, I'll be back later to hear your news.

    Take care,

    A x
     
  18. Alba37

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    Hi all,

    Our tests are being done next week, but I guess it will take a long time coming back. I'll let you know how it goes. I expect it'll be a NO but I'll need to wait and see!

    A x
     
  19. kierbabi09

    kierbabi09 Approved members

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    Ohhh, it is SO tough waiting for the results. For my reaults it took about 2 months to get back Who knows you might get yours much sooner.
    Good Luck and be patient:rolleyes: (is that even possible?)
     
  20. Alba37

    Alba37 Approved members

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    Hiya Kiersten,

    How are you doing? lol, I'm not good at patience, but I guess I'll just have to be! I'll ask how lomg they expect it to take for the results on Tuesday.

    Hope you're ok, and Merry Christmas when it comes,

    A x
     

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