I just want to say one more thing, Rach:

When looking up some of these disease, particularly the mitochondrial diseases, a lot of the descriptions found on the internet sound horrific and hopeless. This is NOT true. What happened is that they used to think that these diseases only occurred in children and, sometimes, young adults. The diseases were considered fatal or very, very disabiling. Now, they're realizing that a lot of adults and elderly people have the mito diseases and they can have disease courses which are mild or asymptomatic or moderate. These cases outnumber the other ones by a long shot.

My terrible neuro sent me home after telling me that I might have a mito disease. Well, I thought I was dead meat I thought my children would be horribly affected. That's NOT true. My neuro was an idiot. And a lot of the internet descriptions haven't caught up. Please be forewarned: they are talking about the worst possible cases. The more up to date sources make this clear. In fact, the UK site is very clear about this. For instance, a horrific sounding mito disease, MELAS, when googled seems hopeless. In contrast, here's the description from the UK site:

This is one of the most common causes of mitochondrial disease. Patients with this mutation have variable disease manifestations ranging from no symptoms at all, to being quite severely affected with the syndrome called MELAS , this is the short name for a collection of symptoms called mitochondrial myopathy, encephalopathy, lactic acidosis and stroke-like episodes.

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In other words if you have a lot of good mitochondrial DNA you are unlikely to develop severe symptoms. If you have a lot of bad mitochondrial DNA then you do tend to develop more symptoms and the disease might be more serious. However, it is only a guide and it has been stressed throughout this website there is an enormous amount of variation between different individuals even with the same level of mutation and even within families.

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The clinical features associated with this mutation can, as stated above, be very variable. We have a number of individuals who clearly carry the mutation who are completely asymptomatic. Other patients have very, very mild symptoms perhaps with a tendency to have diabetes or very mild deafness requiring no treatment. These patients might not be aware that they had the mutation apart from the fact that they were family members of somebody who had more serious disease. Some people with the 3243A>G mutation, also develop diabetes and deafness ultimately requiring the use of a hearing aid or requiring insulin to control their diabetes. Other patients have more severe involvement with muscle weakness sometimes affecting the peripheral muscles and sometimes affecting the muscles around the eyes.

PLEASE take this to heart before you start googling (if you choose to do that). I DON'T want you to go through the h*** that I went through. And I want to assure you that the mito forums are loaded with people, well into old age and not completely or even at all disabled who have some health problems and definitely have some of these mutations but are OKAY.

I just wanted to make this very, very clear!!!!!!!!

Ally