Thanks Alice, I did look up DOK7 and without trying to be too hypochondrial ...there are many similarities. I don't know if I have mentioned but my aunties had a strange walk.. This is ,in part , is part of my 'hysteria' to be diagnosed and 'helped' by a Dr NOW ... to try and prevent this...as I saw my auntie and how the weakness affected her. Her walk was one feature that was puzzling to all. I am not sure I would call it a waddling gait as the DOK7 sites mention though - so perhaps it is not this. I would call it more a robotic jerky style gait - which fluctuated and improved with rest etc etc, And I am not sure she had breathing problems like me - but I do know she slept sitting up - which I am also tending to do now a little - so maybe ...

So much of the information I have is just memories and impressions and family gossip and it is not terribly scientific I am afraid.

Without an experienced Dr that is prepared to listen and test theories - I will never know. I cannot even seem to get past the first stage at the moment. I have not had a SFMEG done only the EMG. The MG Clinic in Sydney sent me home to my local city - saying they did not think I had MG ( but he said he could be wrong) and that 'surely' someone back home could do the SFMEG. That was 14 months ago and so far ..no one will.

At this last appt I had been resting in the waiting room for over an hour as Dr was running late - he did 3 simple strength exercises ( 3 repetitions) and declared he could not see a problem.


Thanks everyone! ... I have some clues now to solve this mystery