Hello

[sofaraway]

Just joined today so thought I should say hello

I'm Nikki and I live in the UK. i have MODY 3 (confirmed by genetic testing), as does my mum and younger brother, my grandad also had it before he died.

I currently use lantus and novorapid to control my diabetes, though only use very small doses.

Am really pleased to find a place especially for people with MODY and will be letting the few online MODY friends I have know about this place.

:)

[MODY-RN]

I am so jelous of those who know what type you have... we can't get the insurance to pay. My daughters Endo treats her with Amaryl, she is doing well on that. My internist has been treating me like a type 2 on metformin and after 2 years, I have boycotted the metformin and all the awful GI side effects and are going to see an Endo to get a second opinion. I am on a Metformin holiday and feel good from a GI standpoint for the first time in 2 years!

[Jayme Dautrich]

I really think it is a crime that the insurance won't pay for these tests given the other things they will pay for...but that is another issue!! Anyway, my dh was just at his check up with the MODY Endo..she is monitoring him close for the next month and then we may be gettng a low dose of Amaryl as well, or Prandin...depends... He is MODY 2 which is usually not medicated, but he is having a bit of symptoms from the sugar levels so they want to try and maybe help him keep a better balance. I wish I could tell you more!! I would continue to push the insurance though. I don't know how much the genetic testing cost out of pocket ours was covered by insurance, but maybe there is a way the Endo could help you get the testing done for just 1 peson in your family...this is a research thing, don't they get grants and stuff?? Sorry I get angry about stuff like this very easy!

[MODY-RN]

Insurance testing can be upwards of $3000 (and that is just the cap on what the insurance will charge a private party). My daughter is on 2 mg Amaryl a day now to try and regulate her sugars. She is horrible about testing so she doesn't have much information to share with the MD. I am finally seeing an Endo in 2 weeks and will get off Metformin. My sugars were way too high off the Metformin (on my metformin holiday) so I am back taking it for now. We will see what happens.

[Jayme Dautrich]

Hi Nikki,
Sorry I have not been online for a bit!! I am trying to keep up!! I am hopeful that I will be online here at least once a day even if it is with just chit chat!!
Jayme