Hi am looking to hook up with some one and share information about MODY and how you cope and what your treatment regime may be,I was diagnosed earlier this year with MODY but am now be retest for the next stage of ten types,Am insulin dependent,Am also suffering from central nerves problems that is associated to my form of MODY and other associated conditions related to diabetes in general,I do not wish to here from others who may think they have MODY or have not been diagnosed or are just guessing they may have it.
Have you seen the MODY group here on TuDiabetes? Really excellent info there, and good support.
I have a keen interest in MODY, suspecting for some time that I might have MODY-2. But I've never been able to get any doctors interested in testing. We do have a group we have started on MODY and we do have some members with MODY. You are actually fortunate to be in the UK, the worlds foremost center on MODY is at Exeter.
I see you're in the UK too! I have MODY type HNF4α, confirmed by genetic testing, and I live in Glasgow, Scotland. Happy to chat if it's any help to you :-)
Re. treatment, I'm currently treated with 40mg Gliclazide which gives me very good control - I have a very strong dose response to sulfonylureas (that's a MODY thing I think) so I only need a tiny dose.
Some MODY patients who were previously thought to be type 1 have been able to switch from insulin to sulfonylureas and get better control, although many people with MODY do need insulin eventually - don't know what stage you're at but correct diagnosis of your type should mean that you can be treated in the best possible way for you.
Do you know yet which form of MODY they think you have?