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Please forgive me - this is new to me and quite life changing and scary.
Just been diagnosed with the above (quite a mouthful). My neurologist has only had 1 other patient with this genetic disease and he has spent some time in other countries as a neurologist.
From googling i think this is the same as DRM (Desmin Related Myopothy).
I was running up and down stairs 12 months ago but now struggle to step over a 1 inch rise with the aid of elbow crutches.
Is anybody suffering the same thing - I simple don't know where this is going, what to expect or if there are any treatments out there that may help.
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