Hooray! A new diagnosis!

[desidiabulum]

Yesterday I met my eternally positive diabetic doctor for the 6-monthly review (my control is always ‘brilliant’ even when I know it isn’t; hba1c of 6.5 is ‘wonderful’ and I am told that I mustn’t try to go lower, but it’s fine if I go higher – I smile politely and let it pass). The one area where she is unfailingly pessimistic is the inevitability of my going on to insulin sooner or later (great way of disincentivizing patients) – I am still told I have to always travel with insulin in case my system suddenly explodes.

She was particularly pleased, after more than 2 years of fruitless tests, to change my diagnosis from ‘MODY?’ to ‘MODY X’. The genius of medical categorization! In case you didn’t know, ‘MODY X’ means MODY when they can’t prove it, so they have created a category that denotes that it’s a MODY where they can’t locate a genetic mutation (but if you can’t locate a known MODY genetic mutation how do you know that the condition *is* MODY?). I’d love to try this in other aspects of life – eg the answer to the world economic crisis is Solution X; the reason the England football team always loses on penalties is Reason X.

Anyway, anyone else with MODY X out there? (apparently 15% of MODY are this, or rather aren’t really straightforward MODY but they don’t know what the hell else they can be). I seem to be gradually being reduced to a category of one. Or should I create my own exclusive forum area? I still prefer ‘Type Weird’…Or maybe this is ‘Type Desidiabulum’?

 

[Unbeliever]

Congratulations! Wonderful news! It must be a great relief and i can ell you are feeling better already!

This is something that they tend to do. All must wear labels for the satistics you know.

Many years ago when I was a civil servant anything or anyone who could not be categorised or pigeon holed went into what was know as he "ephemeral run" Sounds so much more important. Or maybe not - you have now been told you have the "x" factor.

You always knew you were special didn't you?

I have had some recent experience wih this sort of thing. My daughter has been errified for some ime that she might have
an incurable condition. Apparently there IS an incurable condition with the same name as her possible diagnosis but when they are not able to diagnose it they lump all the remainder f sufferers in that category too.
It is a little like saying that if hey can't diagnose your exact condiion then , by defaul you must have cancer.

I suppose as far as reatment goes you will be no worse off. T2 is supposed to be an umbrela erm for many other meablic condirtions and the same is true of many other things.

In tthe end we all have to find our own way through he maze despite he one-size-fits -all approach.

I am surprised that you even managed to get a diagnosis

As treatments tailored o the differen -many different - forms and types of diabees are so far off I wonder why they do no abandon the one-size fits -all system and try to treat us as individuals.

At least they shouldn' loo amazed when the usual reaments don' work for you know they definiely know you are in a very special caegory.

 

[desidiabulum]

Congratulations! Wonderful news! It must be a great relief and i can ell you are feeling better already!

This is something that they tend to do. All must wear labels for the satistics you know.

Many years ago when I was a civil servant anything or anyone who could not be categorised or pigeon holed went into what was know as he "ephemeral run" Sounds so much more important. Or maybe not - you have now been told you have the "x" factor.

You always knew you were special didn't you?

I have had some recent experience wih this sort of thing. My daughter has been errified for some ime that she might have
an incurable condition. Apparently there IS an incurable condition with the same name as her possible diagnosis but when they are not able to diagnose it they lump all the remainder f sufferers in that category too.
It is a little like saying that if hey can't diagnose your exact condiion then , by defaul you must have cancer.

I suppose as far as reatment goes you will be no worse off. T2 is supposed to be an umbrela erm for many other meablic condirtions and the same is true of many other things.

In tthe end we all have to find our own way through he maze despite he one-size-fits -all approach.

I am surprised that you even managed to get a diagnosis

As treatments tailored o the differen -many different - forms and types of diabees are so far off I wonder why they do no abandon the one-size fits -all system and try to treat us as individuals.

At least they shouldn' loo amazed when the usual reaments don' work for you know they definiely know you are in a very special caegory.

So sorry to hear about your daughter -- hope things work out OK for her.
One of the good things about MODY, of course, is that you can be 48 years old and have 'Diabetes Of The Young'
I think I've got off very lightly indeed, to be honest. The only bother is that my pancreas is more fickle than with T2s, so sugars jump around and hypos are a bit more likely, but compared with so many poor souls on this forum I'm very lucky.

 

[Daibell]

Hi. I'm slightly surprised that if you do have MODY that after 2 years you are still able to be controlled with just Gliclazide and sensible diet. That's good news and suggests whatever flavour of db you have it is progressing slowly. Let's hope you are really a T2 and therefore may never need to move to insulin

 

[desidiabulum]

Thanks Daibell -- that is really encouraging. I'd be absolutely delighted to be a straightforward T2 -- I don't want to be 'special'!

2 different specialists diagnosed me as 'MODY?', and the doctor yesterday summarized for me the basis for this roughly as follows:
I was slim & healthy when first diagnosed as diabetic; there is late-onset T1 and child T1 in my immediate family; there are other significant auto-immune problems in my immediate family; my own auto-immune system doesn't always work terribly well. But no specific genetic abnormality detected yet. So it still all seems rather circumstantial, really. All the more incentive to keep bg as low as possible as I drag around my pointless Frio pouch -- maybe I'll never need it after all....

 

[xyzzy]

Hey desidiabulum, like the new label anything with an "X" in makes it kewl :lol:

Have they ever considered you might be plain T2 but one of those slim ones but with high concentrations of visceral fat? Might be worth checking that one out if its not been done.

 

[desidiabulum]

Hey desidiabulum, like the new label anything with an "X" in makes it kewl :lol:

Have they ever considered you might be plain T2 but one of those slim ones but with high concentrations of visceral fat? Might be worth checking that one out if its not been done.

Great idea xyzzy -- I'm certainly not aware of them checking for that. How do you check for visceral fat? (sounds disgusting!). If you're right, then I'll give you the details of the clinic and you can go down there and start being a consultant (or at least take a slice of my doctor's salary).

 

[xyzzy]

Not that sure. You can get those bathroom scales that measure how much % fat you are. I picked up a set from ASDA for just over £20. Don't know how accurate they are or if that would work. My son works with a guy who is thin as a rake yet has very high levels of visceral fat. The Newcastle diet is supposed to shift visceral fat as is loads of strenuous exercise I think. Perhaps some others might give some more ideas as not my area really.