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Limb-girdle MD help!!!!
I have recently being diagnosed with a rare form of Limb-Girdle MD, it usually affects kids and young adults but mine didn’t come around until 37. They specialist has put me in what can only be described as a plastic suit. It is a brace that covers nearly everything and even he Said it was one of the most restrictive he has made!!! I hate It And I can hardly move and I am strapped into a wheelchair!!! Is there any other options … Please help?
Reply To: Limb-girdle MD help!!!!Hi Rachael
I can imagine that is extremely restrictive and uncomfortable. I have never come across anyone with so much supportive bracing. I have KAFOs, basically hip to foot which bend in the middle when unlocked.
My first thought was how you were finding breathing with bracing around your torso? I did not get on with it but I have a different type of MD to you.
When you say specialist, is this an MD specialist?
I know myself how long it has taken to get used to new things. There maybe other members who have experiences similar to yours. We are here to chat, signpost, support should you need us.
Welcome to TalkMD
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Reply To: Limb-girdle MD help!!!!hi Rachel,
Can I ask is the bracing a short term solution? are you experiencing progressive curvature of spine. or is the purpose to support floppiness.
take care
cat
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