New Topic Area - MIDD?

[Sirzy]

Hi,

I've noticed that there is now a new topic area for type 1.5/LADA, which is fantastic!

I was wondering if a similar thing could be organised for MIDD (Mitochondrially Inherited Diabetes and Deafness)?

I was diagnosed with this condition last year and have been feeling very isolated as I've come across only one other person on this forum who also suffers with this condition. I'm not sure if I need to get in touch with a moderator regarding this, so I've posted it in the LADA section as I'm not really sure where I should have posted this!

Anyway, it'd be nice to hear from other diabetics with this condition, although, as I understand it, it's quite rare/not often detected.

Thanks,

Sarah

 

[phoenix]

I think that you're pretty rare
As far as I can remembe ryou are the first person with MIDD (or who knows they have MIDD) in all the years I've been on this forum. If you read the scientific papers linked on the Exeter site they are almost all case studies of individuals or families.
http://www.diabetesgenes.org/content/ma ... fness-midd

 

[Mileana]

Yorksman, honey bee and oldeboy seem to pop up in the search results for MIDD

 

[Sirzy]

Yeah, maybe it's to rare to merit it's own topic area, might be worth asking though, just in case.

 

[Ceesharp]

I've been provisionally diagnosed with MIDD (awaiting blood test confirmation, but DR is 99.9% certain that I've got it. My brother and my son have had their diagnosis confirmed. For 20 years I've been struggling with supposed T2 that doesn't respond well to treatment; I was on basal/bolus insulin as well as metformin, but had to discontinue the metformin because of very bad stomach reaction (this was before I discovered that metformin is contra-indicated for MIDD). My daughters are awaiting confirmation, but one of them, aged 28, physically fit and not obese, has just been diagnosed with diabetes. I would welcome more discussion about MIDD.

Christine

 

[elaine77]

Before the interface change we had our type 1.5/LADA section but then it disappeared and now it's back so yey!


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 22 currently controlled by only Metformin, 500mg twice a day.

 

[Giverny]

Yeah, maybe it's to rare to merit it's own topic area, might be worth asking though, just in case.

Yes that's exactly the case. If we do get enough users with MIDD we'll definitely consider giving you all a section of your own.

 

[kesun]

Hi, I think this is where I belong! I probably have mitochondrial diabetes, though I don't have the A3243G gene mutation.

My first diagnosis was gestational diabetes (age 38), changed to Type 2 postpartum, investigated for MODY glucokinase deficiency a few years later because I wasn't insulin resistant or overweight, then changed to mitochondrial when all the MODY blood tests came back negative. Also I'd had a stroke at age 39 and there's sensorineural hearing loss in my mother's family, so the consultant suspected MELAS.

Low-carbing since 2008 brought daytime bloods back to normal but I always had raised fasting BG (6-7, not scarily high). till I was started on co-enzyme Q10, which miraculously gave me normal fasting bloods. Two years of completely normal (4.6 ish) BG, discharged by consultant, everyone happy, felt like a fraud at 6-monthly diabetes clinic, then just recently all my BG readings are up over 7. Gloom gloom. I'm now waiting to be referred back to the consultant for testing for other mitochondrial diabetes genes and expecting to have to start back on insulin.

I wish I knew more about this condition, but it seems the research is still at an early stage, so even more than other diabetic types we have to go by trial and error.

Kate

 

[Patch]

What is MIDD? What are the symptoms? How is it diagnosed? What is the treatment?

 

[kesun]

What is MIDD? What are the symptoms? How is it diagnosed? What is the treatment?

MIDD is maternally inherited diabetes and deafness, though about a quarter of people with MIDD aren't deaf. It involves insulin insufficiency but not insulin resistance, and almost none of the people who have it are overweight. It's inherited from your mother through mitochondrial DNA.

There's a good article at Blood Sugar 101 at http://diabetesupdate.blogspot.co.uk/2011/12/mitochondrial-diabetes-another-non.html

Kate

 

[ladmug1]

I bleed ****

 

[KJ22]

Hi,

I've noticed that there is now a new topic area for type 1.5/LADA, which is fantastic!

I was wondering if a similar thing could be organised for MIDD (Mitochondrially Inherited Diabetes and Deafness)?

I was diagnosed with this condition last year and have been feeling very isolated as I've come across only one other person on this forum who also suffers with this condition. I'm not sure if I need to get in touch with a moderator regarding this, so I've posted it in the LADA section as I'm not really sure where I should have posted this!

Anyway, it'd be nice to hear from other diabetics with this condition, although, as I understand it, it's quite rare/not often detected.

Thanks,

Sarah

Hi - I have only just joined (almost 6 years after being diagnosed with diabetes - 2 or 3 after being diagnosed with MIDD)
so ye I have it. Have you had difficulty controlling it? I have tried every tablet, Humilin I insulin which made it worse (gained 1 and a half stone and blood glucose was 35 - 40 even with 60 dosage.) now going to try different insulin 4 times a day. I'm a continuous experiment.

 

[DaftThoughts]

From what I understand, just like with LADAs people with MIDD suffer from misdiagnoses a lot (it's one of the main things I've run across during my researching). I think that if we wait for enough people with confirmed MIDD to speak up, we're going to miss out on a lot of valuable information. If MIDDs have a place to discuss their symptoms and stories, we're likely going to see more people with wrong diagnoses speak up and get tested properly. Right now, MIDDs aren't likely to post because there are no places for them. This means the forum won't rank well on Google for unique symptoms and experiences, as well as the MIDD keyword, so we're not going to be seeing more MIDDs join or talk about it either.

Is there any way we can accommodate MIDDs despite there not being as many individuals with this type at present? Even if it's just a stickied topic focused on MIDD in a specific forum?

Edit: Maybe we can start by including MIDD in the dropdown for diabetes type!

 

[azure]

Good idea @DaftThoughts

Let me tag @DCUKMod to see what she thinks about it, and also @Administrator

 

[DCUKMod]

As I'm sure you have read, further up the thread, this has come up before, and a conclusion reached at that time.

Of course, that doesn't necessarily mean the same conclusion would be reached this time around, however, in order for myself and @Administrator to consider this request, I would be interested to hear from those diagnosed with MIDD how they differ from others with Diabetes, and in particular how treatments and living with MIDD differs from other types.

Many thanks.

 

[Dodgygenes]

My daughter was diagnosed a few years ago (at 19 or 20yrs old) and confirmed with MIDD. My son has it too and I had blood test last week to confirm my diagnosis (100% sure already as I have passed it to both my kids). GP needs confirmation before referring for hearing and heart tests. My daughter has had a nightmare getting BG levels under control - now back on insulin 4 times per day. Would be great to hear from others with this condition as so little info out there and dictors/nurses have no experience. Thanks

 

[DCUKMod]

My daughter was diagnosed a few years ago (at 19 or 20yrs old) and confirmed with MIDD. My son has it too and I had blood test last week to confirm my diagnosis (100% sure already as I have passed it to both my kids). GP needs confirmation before referring for hearing and heart tests. My daughter has had a nightmare getting BG levels under control - now back on insulin 4 times per day. Would be great to hear from others with this condition as so little info out there and dictors/nurses have no experience. Thanks

Dodgygenes - You might get more responses on a thread of your own in the T1 arena, rather than here, which was originally started to to discuss aspects of the forum structure.

If you'd like a new thread of your own, myself or another mod can move your post. Just let us know.

 

[Dodgygenes]

Dodgygenes - You might get more responses on a thread of your own in the T1 arena, rather than here, which was originally started to to discuss aspects of the forum structure.

If you'd like a new thread of your own, myself or another mod can move your post. Just let us know.

Thanks but me and my children don't have T1, we have MIDD and it appears there is no designated place for MIDD on this forum?

As per the earlier comments, without 'fitting' anywhere, a great opportunity for discussion, support and potential research is being missed.

 

[Lmwsti]

Hi, I have MIDD and Melas. Had 4 sisters (one died 1.5 year ago) and 3 brothers. I am only 1,6 meter tall and weight 47,5 kilo's. My family lives in Holland but I live in France.

 

[Lmwsti]

MIDD has been found in all females of the family. Melas in everyone, also my brothers. Started with medication like Type 2 but changed into insulin. Most of the information i get from Holland. There is at least one hospital Radboud in Nijmegen that is specialised Mythochondrial diseases. A thread just for MIDD/MELAS would help.