Story about Mitochondrial Myopathy .

Mitochondrial Myopathy - a mystery for 30 years.

Dec 2, 2


I first started suffering in my teens, experiencing bouts of excruciating pain in my lower limbs that wouldn't go away. The first time I suffered was the day after I did abseiling on an adventure holiday with school. I was terrified of doing it. The next day I was having difficulty walking and was in a lot of pain. Other episodes from my younger years seem to revolve around stressful axperiences or being anxious.

The condition has been sporadic, there have years where I haven't suffered. When I have a flare up it lasts for 2 weeks and then goes away like nothing ever happened. During this time I have trouble walking around and am unable to do any activity. I was frightened I was going to end up in a wheelchair.

i kept going to the doctors for years but they were puzzled and I was more or less sent away. I used to call it 'The Thing' because I didn't know what else to call it.

I am a very active person, a competitive cyclist, I was a national champion when I was 16. I have always tried to be active all my life. 

I had a son and when he was about 13 he started suffering with the same symptoms as me. I took him to the doctor and explained about our symptoms and this started a year of tests and hospital appointments for both of us. In June 2014 I had a muscle biopsy which diagnosed the condition. In some ways it was a relief to get a diagnosis as it had been a mystery for all these years, but then the news that there was no treatment came as a disappointment.

My son is an exceptionally talented cyclist who has had his train during and racing constantly disrupted, the same as me. We both try to keep our training going as well as we can. In 2014 we were experiencing flare ups every 3 months or so. In 2015 the frequency has increased and there can sometimes be as little as 4-5 weeks n between. We both get a little depressed and find it hard as we are normally so active. 

We have a wheelchair and crutches to use when we need it. Painkillers don't really seem to help and we have been told to use Baclofen - this doesn't have a massive impact and makes us feel sleepy.

We would be interested to learn what the triggers that set the myopathy off. It is a complete mystery.

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