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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.


  • i didn't want to read and run as i know how horrible it is to desperately want somebody to relate to you or just compare notes with, but i'm sorry i am of no help. however i just wanted to suggest if you've not already tried to, google his condition for chatrooms you may find a lot of people who happen to be on another site, i use justmommies, and i think yahoo has a few too, good luck, he looks gorgeous in the little pic btw.
  • I have a congenital myopathy, as does my sister, my mum and her father. I had my daughter a year ago and we are still waiting to see if she was born with it. My husband and I had genetic counselling before having lo where it was discovered that it would be a 50/50 thing with us too. The consultants are very helpful and will keep you well informed. Do you have the C.M too? Does it affect you or are you just a carrier? I only struggle with getting up stairs, running and getting off the floor but it doesn't stop me from doing anything, I lead a very full life! Hope things go well for you and lo.

  • Thanks for your post Charlotte, i do have C.M but didn't know until lo was born because docs had thought i had suffered brain damage after birth but as soon as we realised that lo was floppy at birth we kind of realised it must have been something genetic.
    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?
  • No she hasn't had a biopsy because as yet, the paediatricians don't think she has got it. She is going to be monitored for the next few years though. I had a biopsy done when I was three years old and they discovered it then. Before that, the docs thought my mum had polio as they didn't know anything about C.M. You sound like you've had quite a rough time with your knees, I keep breaking legs but that's because when I fall I can't stop myself and always land very heavily in funny positions. I hope things get diagnosed soon. If you need to post again with more Qs I'd only be too happy to help.

  • Thanks for that it means a lot to have someone who really understands to talk to about it. The consultants have been great, and I've got a very supportive family but sometimes you do need to speak to someone who is actually living it to feel as though you're making sense.

  • Anytime

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