Anyone got Myotonic Dystrophy?

Hi Tammas,

I was 28 when I got diagnosed and my symptoms were really mild. They are a bit worse now but not a lot, my neck is the biggest problem. Maybe tiredness too, though I am pregnant at the moment so that is exacerbating the tiredness. I got diagnosed because of my Dad. Do you have any children or other family members who know they have got it?

There are a couple of other people on here with Myotonic dystrophy but not many.

Shona

Interesting what you say about cycling as I also found my head was starting to hang down when I used to do some cycling. I don’t do it often enough for it to be an issue though.

Fancy the doctor asking you that? In a way it must be a bit more isolating if you are the only family member with it. I have my dad and until recently had my Grandad (he just passed away). We have lots of other family members with it too but don’t see them as often. I believe some of my family members have got DM1, but don’t know it. They were told about the risk when we got diagnosed (my mum wrote to everyone) but perhaps they have chosen to ignore it. They don’t seem to know much about the symptoms but from what they say they are clearly having symptoms. Everyone reacts differently., The first thing I did when I heard it was in the family, was get on the internet and I knew I had got it straight away, some people prefer to ignore it.

Shona