is lantus causing my myalgia

Hi Oldeboy and Honeybee,

Sorry for crashing your thread, but I was officially diagnosed (through a genetic blood test), with MIDD a few weeks ago, (it's been suspected since last winter. I've only got the diabetes so far, no hearing loss as yet, although my sister has hearing loss without the diabetes.

I've been feeling so, so tired recently with aching legs, and I can barely get out of bed and get dressed some days, most of the time I just want to lie on the sofa and sleep. I knew MIDD could make you tired after exercise, but I didn't realise it could make you so fatigued after not doing anything at! :crazy: I've been blaming my tiredness on depression, my hormones, IBS or irritable bladder, I've never connected it to the MIDD before now, but logically of course, it would make sense.

Oldeboy,

I was aware that Coenzyme Q10 can have a beneficial effect on the hearing loss and fatigue associated with MIDD, (I've yet to find a brand that doesn't aggrevate my bladder though), I'd be willing to give B vitamins a go too if they could help with this awful tiredness. Is there a particular b vitamin I need to take or just a mix of them all?

Do you have MIDD yourself? I'd be really interested in picking your brains about this as you're the first other person I've come across with this condition (other than my sister of course, although she's impossible to talk to about this as she likes to pretend that it's not really happening to her, just to me, as I'm the one who's had an official diagnosis). Do you know of any organisations I could join, etc? I've read an awful lot of medical journal papers about the condition, but haven't been able to find any sort of personal support or even anybody else with this to talk to about it. My dad has type II diabetes, but he pretty much eats what he likes and just keeps telling me that exercise is the key to diabetes, and while I know exercise has a place, when I feel as awful as I do at the moment, even a short walk makes me feel tired, never mind a 2 hour session at the gym!!

Anyway, it's just nice to come across somebody else here who's heard of MIDD before. If you don't mind, I might PM this message to you too, just because I've just noticed that this thread is a few months old and might not be read.

Cheers,

Sarah

Hi Sarah

Thanks for posting about your diagnosis - it is always interesting to hear from someone else with this rare condition. Yes I have MIDD, my mutation is at A3243G and I'm guessing yours in the same?

What follows is some general advice and links to important journals I use in the care of my condition. Remember though that although we have the same condition i.e. MIDD, we all react differently even in the same family much more so than other medical conditions. So what might work for me might not work for you and vice versa. Also the condition is still relatively unknown and there remains much unknown about it. No one understands the condition and if anyone pretends they do or acts if they know something definitive about your condition I suggest you be wary of their advice. With all that in mind here are some suggestions:

- Register at one of the three national mitochondria clinics either Queen's Square, London; Oxford or Newcastle and see one of the consultants there. Details are at: http://www.mitochondrialncg.nhs.uk/contacts.html You'll need a referral from your one of your doctors, any will do. You might find it quicker to phone the mito clinic first and introduce yourself. I did and then I got my diabetes doctor to email the letter.
- Each of the three mito centres has an annual open day with lectures and discussions. I've been to the london one and met many other people with MIDD which was very interesting. I think a previous Newcastle one is available on-line.
- Fatigue is one of the worst aspects about the condition. I wasn't able to work at the start of my illness but after taking some co-q10 and later carnitine I was back to full time. Only a small percentage have such a dramatic positive reaction to co-q10 like me, lots of people get nothing from it and some get something in between. I tried over a dozen different brands as many irritated by stomach. I take Lamberts now which I found to be the best. I take 600mg per day now however I only needed 150mg per day when I first started. I also take carnitine (carnitor) 2-3 times a day. You can get both on prescription. On b vitamins I take a berocca in the morning and some more b-vits at lunch. I also use magnesium oil on my legs for the cramps and take rehydration salts for my dehydration. I also take vitamin d.
- Here are some helpful links to info on supplements and also some tips on what to avoid: http://www.mitoaction.org/files/Mitochondrial%20Disease%20Treatment%20-%20Current%20Treatment%20Options%20in%20Neurology%202009-2.pdf & http://www.mitoaction.org/blog/mito-cocktail
- The two big helpful mito charities are in the states: http://www.mitoaction.org/ and http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.7929671/k.BDF0/Home.htm both have massives of information.
- Most of my time online is spent on mito sites as although only a minority of mito sufferers have diabetes we all share other common symptoms such as fatigue. Diabetes seems relatively easy to manage in comparison.
- Facebook has several groups for those with mito which are very supportive. This is a good one to start and introduce yourself: http://www.facebook.com/groups/mitomattersuk/ (I've been meaning to start a MIDD only group for ages but not had the energy!)
- One way your condition can progress is through getting infections. Do your best to minimize them and treat them quickly should you get one. Most of us keep anti-biotics at home. Also you will need to avoid certain drugs - here is a list: http://www.mitoaction.org/files/Mito%20Toxins_0.pdf (though remember what I said above - we all can react differently to different things so you use your own judgement and that of your trusted doctors.)

Two other points: you said your dad has diabetes. Does that mean you have diabetes on your paternal and maternal side? Or is your mum, aunt or gran just deaf? My younger sister is also in denial!

I can now access my PMs.

Hope that has been helpful.

best
Rich

Blimey oldboy !!!!!!
So much of what you are saying IS ringing so true with 'me' ....
Deafness runs thickly in my fathers side, plus I was born deaf [mum got german measles/ruebella]
Have constantly picked up infections easily, more so now I am diabetic.
I find my joints n bones ache, thought this was due to high blood sugars n statin I take?
Have been tested for 'cushings disease' as am so tiny in my limbs with a tummy bloats up
so easily with my bowel disease!
Am only able to tollerate certain drugs [these have to be certain type sterate based!]
Have terrible vomitting n stomach spasms otherwise...
Am vitamin D deficient, use berroca in the winter and had vitamin D injections calichew D3 Forte.
Also after having pneumonia then septis infection, 10 months later was called in by my GP
and told firmly that I was diabetic, couldnt n wouldnt believe it ... :shock:
Was told I am type2 'yet' they do say am tiny for a type2 ? Have badgered my gp for a
c peptide test as have wondered 'if' due to the pneumonia/septiceamia then BAM was told
10 months later I was diabetic. [it all happened in a short space of time]
Wondered if these impacted n was the cause of my diabetes ???
He reluctantly agreed to let me have it done, after shouting these tests cost a lot of money!
I stuck to my guns and insisted I had one done as never had one nor been offered one either
up at my diabetes clinic they always shy'ed away from this subject when I raised it.
Was told you are a type2 , get used to it!!!! [their very words!]
After my one and only pregnancy I was diagnosed hypothyroidism [auto immune disorder]
Dont know [if] this sheds any light ?
Am due to have the c peptide test next monday [18th june]
Have been easily tired since the pneumonia/septis infections, had 7-8 sinus infections last 2 yrs!
All neeeding stronger antibiotics to treat them.
Am sorry am going on n on about all my ailments, but your post has GRABBED my attention!
I 'will' PM you tomorrow to pick your brains , find out just how n where to start with this....
Many thanks for all this helpful and informative info .
Never ever heard of this before your post.
Post here on the forum 5 or more times then you will find you can access the PM facility.
Hope this helps you to access the PM's soon .
Anna.

Hi Anna

Although you have similar symptoms to those with mitochondria disease from what you have told me I think it is unlikely you have MIDD (MIDD is essentially a mitochondria mutation/disorder.)

The reason is mitochondria disorders/mutations are passed through the maternal line only. So for you to have mitochondrial diabetes or MIDD it needs to have come from your mum though it may have manifested only in your aunt or gran. The mitochondria are the power stations or central hubs of each cell and have their own genome. Mitochondria with a mutated gene are passed down through the maternal line only. Depending on how many mutated mitochondria the mother passes down effects the manifestation of the disorder. Parts of the body begin to fail when the number of mutated mitochondria reach critical mass in that organ e.g. the pancreas.

The peak time for being diagnosed with mitochondria diabetes is mid 30s though you can get it any time from early adulthood to old age. The deafness tends to start a bit earlier but I am not medically deaf yet and I'm mid-late 30s. Sometimes the disease might skip a generation or effect siblings differently or not at all.

You imply that your diabetes is from your dad and you say that you were born deaf due to illness during your mum's pregnancy both of which would indicate something other than a mitochondrial disorder.

I will post some journals later which contain more info and a fully explanation though feel free to post any questions in the meantime. (After two more posts I will be able to access my PMs.)

Rich

Hi Rich,

Thanks very much for the detailed reply Yes, my mutation is at the same place, I think this can also cause a condition called MELAS, but judging from my symtoms and my family history my diabetes and genetic consultant are certain it's MIDD. My dads side of the family all have type II diabetes and tend to be erm, lets say, cuddly! No deafness on my dads side though. My mums side have always been skinny as rakes, including my sister, and all have had progressive deafness. Luckily, after my recent hearing test, I only have some slight loss in my left ear due to tinnitus from too many gigs! What age did you develop/were diagnosed with MIDD and how long you've known about it? Was/are your mum, gran and sister slim too and showing symptoms? I was diagnosed with type II diabetes last summer, when I was 36, and officially diagnosed with MIDD recently.

My diabetes consultant seems pretty knowledgable about MIDD, (although I was the one to tell him about the benefits of Coenzyme Q10!) and seems to be in touch with the Newcastle centre fairly regularly (I'm in Glasgow at the moment). He treats another patient with MIDD apart from me, and when I went to see him after my official diagnosis, armed with a long list of questions, he was able to answer everything I asked him, and was happy to discuss the technicalities of the condition with me in great detail (I work as a biologist, so he doesn't treat me as if I'm an idiot which many drs can be prone to do!) So on the whole, I think I'm very lucky to have him! As I understand it, the severity of the disease and how in makes itself known depends on the ratio of mutated genes to 'normal' genes, and also how they're distributed throughout the different organs. I'm really hoping that the deafness doesn't become too severe in my case, although, as I said, I'm really struggling with the fatigue at the moment.

I tried my brand of coenzyme q10 again today, but there is definately something in them that my bladder isn't happy about! I'm not sure if it's the coenzyme q10 itself or the fillers, I'm hoping it's not the coq10, although I read somewhere that it's produced by fermentation, and fermented foods are usually a no-no for my bladder :crazy: I've not come across carnitine before, how does this help with MIDD? Is it general energy levels?

Thanks for all the links too, I'll have a look at these over the next few days when I have the time. I think starting a facebook group for MIDD would be a good idea, but to be honest, I think I'd be wary of joining it on the basis that I wouldn't want any future employers to find out I have this condition. My genetic consultant told me I was under no obligation to mention it at job interviews etc, so I wouldn't want them to find out by looking me up on FB! Plus, only my family and a few friends know about this too, so I wouldn't want to share it with people I'm not ready or willing to tell just now.

It'd be great to keep in touch 'cos, as I said, there's nobody else, (except my sister who doesn't want to talk about it, funny how yours is the same!) to speak to about this, and you sound pretty clued up on how it can affect day to day life. If we can't pm here I'll look you up on FB and send you a message there.

Cheers,

Sarah

Hi

I was 34 when I was diagnosed with diabetes and I self-diagnosed the MIDD after the fatigue started shortly afterwards. My family are all slim.

I had noticed a small degradation of my hearing when I was around 30. My hearing has got progressively got worse 3 times since then. Once after 6 months after diagnosis and twice after serious infections.

On the fatigue I did a lot of work studying the ATP process which helped me a lot. Given your biology background you should be able to pick this up quicker than me! It is possible we are deficient in some of the co-efficients including co=q10 and carnitine. (They test for this in the states but not here.) I suggest having a look at the mitochondria page at http://www.medicalinsider.com/ and also Dr Myhill's site: http://www.drmyhill.co.uk/ Although both are geared to ME sufferers what they have to offer on helping the mitochondria is very helpful. The medical insider site in particular is very good.

You can get co-q10 in liquid form and in other different guises. Good luck in finding one that works for you! A good pharmacist may be able to help.

best
Rich

The below is fairly good summary of the condition though a little out of date (most documents on the condition are unless they were published this year) and encompasses a lot of what the condition is but not everything. I took it from here: http://www.diabetesgenes.org/content/maternally-inherited-diabetes-and-deafness-midd

Maternally Inherited Diabetes & Deafness (MIDD)
The key identifying features of maternally inherited diabetes and deafness (MIDD), as the name suggests, are the presence of diabetes and/or deafness that are inherited by the children of an affected mother but not by the children of an affected father.
Maternally Inherited Diabetes and Deafness (MIDD) is caused by a change or mutation in mitochondrial DNA (the most common change is known as 3243A>G) and was first identified in 1992. As all the mitochondria we inherit are inherited from our mothers the genetic change is passed down from an affected mother to all her children. However with these particular genetic changes there is considerable variation in how much people inheriting these changes are affected. This means some children will only have deafness or only have diabetes or may have no problems at all. Fathers who have MIDD can be reassured that they will not pass the condition on to their children as all mitochondria are inherited from the mother. This means that although children of both sexes will inherit the affected mitochondria only women will pass the condition on to the next generation.
It is important to make a definite genetic diagnosis of MIDD as this helps diagnose the cause of the deafness and diabetes, helps with the treatment, guides which additional tests are recommended and helps advise other members of the family.
Why are mitochondria important?
The main purpose of mitochondria is to generate energy within the cells by producing a substance called ATP this allows the cell to perform their functions correctly. MIDD tends to affect the organs where cells are most active such as the pancreas and the cochlea (in the ear) and in some cases the retina (the back of the eye), the muscles, kidneys and brain.


What about the diabetes?
MIDD affects up to 1% of all diabetes but often goes unrecognised and is misdiagnosed as either Type 1 or Type 2 diabetes. The average age at which diabetes develops is 37 years but it ranges 11 years to 68 years of age and often needs insulin treatment. Those with MIDD are usually of normal body weight. MIDD leads to diabetes because it reduces the amount of insulin made by the beta cells in the pancreas.
The majority of people with MIDD can, at the start, be treated with dietary changes or tablets. However insulin therapy is usually needed within 2 years of diagnosis reflecting the reduced insulin secretion. Metformin, a commonly used treatment in diabetes is probably best avoided as Metformin is known to interfere with mitochondrial function and the risk of lactic acidosis may be increased although this has not been reported to date.
What about the deafness?
The deafness is a result of the nerve to the ear being affected in both ears and develops in around 75% of people with MIDD who also have diabetes. The hearing loss typically develops in young adulthood (although may develop as children or later in life) and usually is present before the diabetes. The deafness is more common in men than women and men have more severe and rapidly progressive hearing loss. Half of those with hearing loss suffer a rapid decline in their hearing while the remainder have slowly progressive hearing loss over many years. Hearing loss is variable, but can require bilateral hearing aids; although it seldom leads to total deafness. Typically the impaired hearing relates to the inability to hear high frequencies. Early detection of deafness by periodic audiograms in children is important and prompt antibiotic treatment of any ear infections is also logical. Cochlear implants have been successful in cases of severe hearing loss in MIDD.


Other features that can occur in MIDD
In keeping with other mitochondrial disorders, MIDD can, in some patients, result in other medical problems apart from diabetes and deafness. As with the diabetes and deafness there is considerable variation in the extent to which these occur. Even within one family individuals may have varying numbers and varying severity of clinical features with some having diabetes alone and others having many organs affected.
Other features sometimes associated with MIDD:
Short stature is common and MIDD patients are frequently thin (body mass index less than 20).
Heart problems: It is important to screen all MIDD patients in case they have heart involvement which can cause serious problems with the rhythm of the heart. This would include an ECG (and usually an echocardiogram) at age of 35 years, or earlier if there are any clinical features or history of problems in any family members. In high risk individuals this should be conducted annually. Statin medications should be used in those with cardiovascular risk factors.
Myopathy (Muscle weakness): muscle problems of either weakness or cramps may be present in around 40% of cases of MIDD. This generally involves proximal muscles (shoulders, buttocks and thighs) which are used when climbing stairs and presents as exercise induced muscle cramps or weakness.
Renal (kidney) disease: Protein is commonly found in the urine of MIDD patients, particularly in women. Renal disease sometimes presents before the diabetes or deafness. The most common renal problem is called focal segmental glomerular sclerosis and some patients develop end stage renal failure. Renal function should be monitored annually as part of the routine diabetes check up. Tablets called ACE inhibitors should be started early due to the high degree of renal complications and good blood pressure control is also important.
Retina (back of the eyes): Problems can include macular dystrophy including pigmented lesions and thinning of the epithelium. Visual symptoms are rare but can include visual loss, night blindness, blind spots and dislike of bright lights. Most patients with this macular disease have had diabetes for more than 40 years and are aged over 40 years. Eye screening is important and should be carried out annually.
Strokes: In young adults less than 45 years of age stroke may occur in around 1% of patients.
Gastrointestinal disease: Gastrointestinal complaints may be quite common in MIDD, particularly constipation.
Genetic testing
Genetic testing should be conducted to confirm the diagnosis and can be done using either blood, saliva or urine samples although occasionally muscle biopsies may be taken.
Family follow up
Maternal adult relatives of patients with MIDD are at risk of developing diabetes, hearing loss, renal failure or heart problems so long term follow up of relatives is advisable.