Hello:

I'm new to NeuroTalk and this is my first time posting in the Neuromuscular forum.

I was recently diagnosed with Myatonic Dystrophy Type 1 (Adult Onset). Unfortunately I was being treated for a work related spinal chord injury ( Cervical Radiculopathy and Myopathy ) and due to some similar type of symptomology we missed the onset of the Dystrophy and many of the symptoms I was presenting with were being attributed to the SC Injury and no one caught on to the increasing symptoms of the MD until some unusual symptoms popped up that couldn't be attributed to the SC Injury ( like suddenly realizing that if my head fell forward with my chin on my chest I was not able to lift it back up unless I literally picked it up with my hands ...) Well, needless to say it wasn't long after that I was referred to one of the neuromuscular clinics and the diagnosis of MD followed after a multitude of tests were done.

I'd be interested in hearing from anyone who has had some experience in coping with the Myatonic Dystrophy ... coping strategies, etc for dealing with some of the limitations I'm now learning to deal with. I currently am able to walk with the aid of forearm crutches but continue to have problems with falling ... good days/bad days ... I also have a motorized wheelchair now that I use for distance travel/walking and for those days when the fatigue is overwhelming. This is all very new to me ... the doctors from the neuromuscular clinic are very good and helpful, very supportive ... but it would be nice to hear from others dealing with the same or similar condition ... your experiences ... any suggestions for coping ... etc. Where I live there is limited access to specific support services and groups. It would really be nice to talk to individuals dealing with similar situations and circumstances.

We're looking forward to hearing from others here and sharing information.

Hoping everyone is safe and well this evening and wishing everyone peace, comfort and resolutions to all that you struggle with: Kefrin