Congenital myotonia? Help! (PIOG)
October 1, 2012 at 6:19 PM
We just got back from Molly's follow-up appointment on her hand xrays. The radiologist noted "congenital myotonia" in both hands. The doctor is unfamiliar with it and was calling other doctors....but we googled it together but there are so many different types. He will do some research and get back to me. Is anyone familiar with this? I see some cases that are not scary and others are fatal...with lots in between.
October 3, 2012 at 4:15 PMhttp://en.m.wikipedia.org/wiki/Myotonia_congenita
Idk if you looked here or not. I know it's Wikipedia but it's a start. Good luck your LO will be in my prayers.
by PEEK05October 4, 2012 at 11:13 AM
No not me, sorry. Here is a bump.