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Limb Girdle Muscular Dystrophy - Carers UK Forum

Limb Girdle Muscular Dystrophy

For issues related to specific conditions and disabilities.
Can anyone help? I have gone through all the websites and whilst they have a lot of info nothing is particularly helpful understandably the main focus is Duchene. My wife is now over 60 and appears to be deterioating ever faster she now needs to use a ventilator overnight which has improved her day to day life but I believe failure of the lung muscle is common in the final stages, has anyone experience of what we can expect from here on?
Hi Tony, I see what you mean about the lack of information on the web! Very limited, isn't it?

I can only suggest talking to your wife's specialist, to try and get some idea from them - or contact the Muscular Dystrophy Campaign's web forum here:

http://community.muscular-dystrophy.org/index.php
Unfortunately the doctors are really only treating symptoms as they occur and we are not under a MD specialist.
Tony I am a 53 year old manifesting carrier of Duchenne Muscular Dystrophy and mother of a 27 year old son who has Duchenne Muscular Dystrophy. We do not have a muscle specialist either. My son also uses a ventilator overnight to help him breathe and also roughly 14 hours a day. There isn't any treatment for muscular dystrophy apart from steroids but they bring their own problems. I am not by any means an expert but if you want to talk I am willing to listen.

Eun
Many thanks Eun, but I was actually after specifics of LGMD. My OH was diagnosed many years ago in fact before it was discovered that there were I think 11 different types, what I was trying to find was some info on what could be expected in what I fear are the final stages rather than treatment.