MIDD Diagnosis at First Diabetic Clinic Appointment

[Sirzy]

Hi everyone,

I really don't know if I've posted this in the right place, so apologies if it's in the wrong section.

Anyway, I went along to my first appointment at the diabetic clinic today and was hoping to be tested for LADA, but after taking my family history, the doctor thinks it's highly likely that I have a rare form of diabetes called 'Maternally Inherited Diabetes and Deafness.' I have a science background, so he explained the genetics of this to me fully and what it's effects are likely to be in the future. He was a great doctor and was able to answer all my questions, etc, I was also quite impressed that he was able to pick this up from my family history, and he has now sent off my blood to be analysed to make sure this is a correct diagnosis.

It was quite funny to see his eyes light up at the possibilty of being able to study my case, and probably get a journal paper out of me and my defective family genes!! :?

I think I'm a bit shell shocked to be honest though. I knew I was diabetic, and was keeping my fingers crossed that I would be a 'run of the mill' type 2 flavour, rather than LADA, but this has completely knocked me for six, I'd never even heard of MIDD (and I thought I'd done my homework on diabetes!)

I'm just feeling a bit isolated by this diagnosis, I think dealing with type 2 was bearable for me, as I have good diet only control and it doesn't effect me too much in my daily life, but now I have to deal with deafness and a faster progression onto insulin too?!! :cry: One of my greatest pleasures in life is music, it's just overwhelming to think that this will be taken from me eventually. It's like a double kick in the teeth, diabetes and deafness, here you go, have that!! It just feels like so much to have to deal with, mentally, all at once.

I was wondering if anybody else on the forum has MIDD. Apparently it's a very rare form (hence the excitment of the doctor), but it's made me feel like I don't fit in here anymore, silly I know, but I just feel like a genetic oddity now

So sorry for this post, I know it's just one long rant, but I feel so shocked by it all, like it can't be really happening to me. The sad thing is, my sister is already partially deaf (no diabetes as yet), and she has two kids who might be at risk from this too. Thanks ****** genes, anymore suprises instore for me?! :shock:

Sorry again for the rant :?

 

[Sirzy]

I've been researching this condition all afternoon and am absolutely terrified by this. It seems to consist of progressive hearing loss, very fast progression to insulin (within 4 years of diagnosis), sight problems, heart problems, and possible 'stroke-like' symptoms.

There's nothing at all I can do about this, nothing I can do with my diet, exercise is contra-indicated as MIDDS suffer from lactic acidosis more than 'normal' diabetics, I feel totally helpless. On the plus side, both my mum and her mum only needed reading glasses (both were VERY hard of hearing though), and my nan lived into her 70's, my mum only made it into her 50's before a heart attack took her.

Does anyone here no anything about this disease? Any forums or know of anybody else who has this? I'm frantic with worry, not just for me, but my sister and her kids too

 

[sugar2]

Sorry to hear about your diagnosis. that must have been a shock! I am T1, but do have deafness in my family. Your post has promted me to my own research.
Sorry, I can offer you any advice, as I too had not heard about MIDD. I guess teh positive thing is, that although you have had teh shock of diagnosis...you at least now can do everything possible to fight against the condition. It is an assumption on my part, but here goes...if you google anything about diabetes, especially looking for scientific data, it is all pretty much doom and gloom. This is often becasuethey have to use historical data, of generations that have passed before us. If we could look at teh prognosis of people being diagnosed today, i suspect, although I don't know, that they would be much better. There is someone on this forum, who did not expectto reach adulthood, and is now enjoying middle age...and I suspect looking forward t a long old age too. Things are getting better, treatment and preventatie drugs for some of teh side effects.

sorry, teh above is very general, and not MIDD specific, but I hope and pray that the essence is at least true.

 

[Sirzy]

Hi Sugar,

Thanks for your reply After the reading I've done this afternoon, I'm feeling a bit more positive about things. The hearing loss can be treated with hearing aids and it seldom produces total deafness. I'm a bit concerned about the rapid progress to insulin, but I'll deal with that when it eventually happens I suppose, I don't really have much option to do anything else!

It may well be worth mentioning this to your dr, especially if the deafness in your family usually goes hand in hand with the diabetes. Apparently it usually appears between the ages of 25-35, so if you've been diabetic from a very early age this might (or might not) rule you out. The treatment is the same though, except they keep a close eye on your hearing too (which I expect you already have anyway).

How bad is your hearing loss? Is it progressive, and what kind of hearing aid do you use? My sister's don't seem too noticable, just something else to have to worry about, particularly when the batteries die during a night out! :?