How has your muscle weakness progressed since your diagnosis at 25?
It sounds like you've been living with myotonic dystrophy for over 20 years now, and the increasing weakness you're experiencing is unfortunately part of how this condition typically progresses. Myotonic dystrophy does tend to worsen gradually over time Show Full Answer
How has your muscle weakness progressed since your diagnosis at 25?
It sounds like you've been living with myotonic dystrophy for over 20 years now, and the increasing weakness you're experiencing is unfortunately part of how this condition typically progresses. Myotonic dystrophy does tend to worsen gradually over time, with muscle weakness becoming more noticeable as the years go by.
Since you were diagnosed after your son was born, you likely have myotonic dystrophy type 1 (DM1), which is the more common form diagnosed in young adults. The weakness in DM1 usually starts in the distal muscles (hands and lower legs) and can spread to affect other muscle groups over time.
At 46, after two decades with this condition, it's completely understandable that you're feeling significantly weaker. The progression varies from person to person, but muscle weakness does continue to advance.
Here are some things that might help manage your symptoms:
* Regular monitoring by your healthcare team, especially for heart and breathing function
* Physical therapy to maintain mobility and strength where possible
* Assistive devices like braces or mobility aids if walking has become difficult
* Medications to help with specific symptoms like myotonia (muscle stiffness)
Have you been able to stay connected with a neuromuscular specialist who can help you manage the progression and adjust your care plan as your needs change?
February 9
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