International researchers currently suspect additional forms of myotonic dystrophy (DM3 & DM4) may be present in chromosome 16 and 21 and that subsequent forms (DMX) of myotonic dystrophy may exist. They are currently attempting to identify the causative mutation for these.

This DM3 SUPPORT/ADVOCACY GROUP is intended for those patients with clinical symptoms of myotonic dystrophy who have received negative gene tests results for both DM1 and DM2. Other myopathies should also be ruled out for patients before suspecting this possibility.

This disorder(s)is suspected to have symptoms somewhat common to the other myotonic dystrophies (DM1 and DM2), which are autosomal dominant inherited multisystemic disorders caused by defective genes. The clinical features are heterogeneous & may include the following: progressive muscle weakness & pain, myotonia, fatigue, cataracts, cardiac abnormalities, and cognitive symptoms. This forum is to encourage contact with other patients who also remain in limbo regarding their diagnosis.

Participants of this forum must note that we are not medical professionals. Ideas and discussion in this forum are intended to be educational in nature. All members are urged to seek the advice of a trusted medical provider before acting on these. For diagnosis and management of this disorder, it is suggested you seek a neurologist who specializes in adult neuromuscular diseases.