Conjenital Myopathy
My LO is almost 7 months and we are still waiting for a confirmed diagnosis but so far the docs think he has a conjenital myopathy (muscle disorder) and they are waiting on results of teste to hopefully determine which one. the unusual thing about it is i had the same problems as a baby but it was thought i had suffered brain damage after birth so i had no idea when i was pregnant that my baby would be affected in any was by the problems i suffered.
now though it seems that i've got the disorder which we think is the same as the baby and if i have more children ther would be 50/50 chance of them having the same.
is there anyone else on here with similar story? or anyone else with lo with muscle disorder? could do with finding someone else to talk to about muscle problems and prognosis for the future.
now though it seems that i've got the disorder which we think is the same as the baby and if i have more children ther would be 50/50 chance of them having the same.
is there anyone else on here with similar story? or anyone else with lo with muscle disorder? could do with finding someone else to talk to about muscle problems and prognosis for the future.
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Charlotte
I have lead pretty much a full life apart from the fact that i have dislocated each knee multiple times because the muscles in my legs ar particulary weak. i too only really have trouble with stairs i tend to go up on all fours, I've never been able to run anywhere and struggle to get up off the floor too. i am finding it hard to hold the baby for any length of time too, feeding is somtimes pretty uncomfortable if i have to hold the baby up a bit, mostly i use loads of cushions. This is mad, i've always just thought i was lazy or unfit it's been difficult dealing with all the emotions that go along with realising there's been an underlying problem.
i can't believe how long it takes for them to diagnose. did your lo have a biopsy?
Charlotte
Charlotte