I hope you get well soon Bram and they find some answers for you :wink:
It's very scary not knowing what is happening! I started falling over just over a year ago....my wife thought i was being clumsy all the time then we soon realised that they was more to it, and went to see the doctors. I had many tests done Blood tests, MRI's, EMG and all sorts of stuff.....It was very scary stuff and the waiting was horrible! All the doctors were at a loss as they had never seen it before so they contacted Newcastle neuromuscular centre for rare diseases and then sent me up there. I lost all movement in my ankles and my muscles wasted in my calves and i had to get leg braces fitted. After a lot more testing they told me that i have a very rere muscle disease called myofibrillar myopathy but they didn't know why it had happened. They said that i had to have a muscle biopsy to get a piece of the affected muscle out for testing to see which of the genes had mutated and caused the disease. I've had two muscle biopsies taken from my calves to try and find the mutated gene but both times they couldn't get usable muscle tissues and saw that the muscle fibres were completely destoyed in both calves.
I'm actually going back into hospital tomorrow to have a third muscle biopsy......this time they are taking muscle from my thigh muscle (quadricep) to see if they can get usable muscle fibres.
I've not really told you guys on here about it (except for Chris) it's just been a real life changer and i've been in and out of hospital all the time.....one minute you're ok the next minute your life gets turned upside down :shock:
Good luck with the tests Bram :wink:
