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sandhkay (@sandhkay)

Distal Myopathy

Bones, Joints & Muscles | Last Active: May 29, 2016 | Replies (5)

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@colleenyoung

Welcome to Connect @sandhkay.
As you rightly noted, there are many types of DM. I’m trying to wade through this article to get a better understanding http://www.ncbi.nlm.nih.gov/books/NBK1466/

I’d like to introduce you to @gailfaith who just yesterday posted about Myotonic Dystrophy type 2. If I understand correctly, distal myopathy is a differential diagnosis of myotonic dystrophy, They are both progressive genetic disorders characterized by wasting (atrophy) and weakness of muscles. Correct?

Would you like to join Gail on this discussion thread? https://connect.mayoclinic.org/discussion/myotonic-dystrophy-type-2/

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Replies to "Welcome to Connect @sandhkay. As you rightly noted, there are many types of DM. I'm trying..."

Thanks for responding to my post! I don’t believe distal myopathy is a subcategory of myotonic dystrophy. There is no myotonia and onset is later in life. There are many subcategories of distal myopathy, and I don’t have a specific diagnosis as to which type because the defective gene hasn’t been identified, even though (my DNA) I’ve had full exome sequencing. I’ve had the good fortune to be evaluated by the expert on DM – Dr. Margherita Milone, at Mayo Clinic. I’m reading whatever I can (thanks for the links!) and hoping to come across someone else with distal myopathy – to hopefully provide mutual support and learn more.