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Conditions

Muscular Dystrophy

Muscular dystrophy is muscle wasting condition that is estimated to affect around 70,000 children and adults in the UK. There are over 30 different types of the condition, the most common being Duchenne, named after the pioneering French neurologist whose early work on the condition brought it to the attention of the medical world.

Duchenne muscular dystrophy affects around one in every 3,500 male births. Sufferers of this form of the disease are usually diagnosed in their early years, and are often wheelchair-bound by the age of 12. People with this form of the condition are unlikely to live past 30, although some other forms of the illness may lead to a longer life expectancy.

Muscular dystrophy is usually an inherited condition and is caused by a mutation of the gene that is responsible for muscle structure and function. There is no cure but the treatment can be managed. There are exercises and physiotherapies available, while surgery is an option to help correct postural deformities, such as scoliosis, that can occur in sufferers. Steroids can be taken to help build muscle mass and other medications can be taken to associated with muscular dystrophy. There are also many valuable support groups for sufferers and their families.

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My husband has suffered with severe pain in his right leg for the last 7 yr which he has been told he has nerve damage and muscle wastage. He has had numeral scans and has been told he has to live with it as nothing can be done. He is in extreme pain at all times as he can't,sit,walk or lay down. I feel so frustrated as no.one seems to help. He is on very strong meds, morphine etc, etc. We just don't know where to turn. Any advise would been really appreciated





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I have been suffering from poor muscle control which firstly began in my pelvis (been diagnosed and I'm to have a transvaginal op also a rectocele repair ) My health has been on a decline due to the fact all of my muscles ache after a few minutes of any kind of exercise strenuous or not ... Not just a little aching as most if not all my limbs joints and muscles shake and hurt like I've run a marathon. I'm a carer for my disabled son and can't afford to be ill as people depend on me. I'm getting frustrated with my gp as he keeps offering tablets and No helpful advice other than lose weight... Exercise is important for the body and helps weight loss but how can I exercise when within a few minutes I'm literally shattered? I know my body and have never had a problem with any kind of exercise before... Please help!!!! As I know this is not just in my head. This problem has been affecting me since 2012. Awaiting your reply





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I have communicated online dating site with a man who is 50 (I am 48) who I felt a connection to. He shared with me that he has MMD. It scares me. I like him, and feel so horrible that I am worrying what others will think..."why would a very mobile, able women consider getting to know him better..?" I feel horrible that I am thinking these thoughts, I would not want anyone to feel that way about me, so why would he...I am sure others have felt this same way, please help me talk it through.... Thank you





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My son has Duchenne Muscular Dystrophy is now 31 years old, 32 in September. His brother was also a sufferer of DMD and sadly passed away when he was 18. Shane now uses a non-invasive ventilator which he started using for nearly 2 years. I feel he is an inspiration to other sufferers and the main thing is keeping him away from chest infections and acting quickly if he gets one.





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hi ,my brother has becker md, he is 50 and is an artist and photographer ,he plays guitar beautifully .he spends half the year in texas with his partner and the other half in scotland .he travels alone and has only recently started using an electric chair.he has converted a garage where he builds and customises his own wheelchairs .his life is much more productive than mine and he is my hero .





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My boyfriend has suffered from numbness in his toes and feet for the past 2 years, the condition is getting worse. Where as the muscle is not wasting it is goeing the oposite way. He has been told he has legs like a boxer and the muscles are getting bigger however he does not train whatsoever. Members of his family have been diagnosed with CMT but he has had tests for this and has been told he has not got this inherited gene. However, my partner continues to get the feeling of pins and needles and the feeling of glass on the bottom of his feet. Also his nerves are twitching in his legs at times making his legs ache. Does anyone know what this could be?





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Hi I'm just wantin to no if I wil ever get a diognois for my muscle wasting ,I have been sufferin this for nearly 6 r 7 yrs now the neuroligist nos there's muscle wasting on my right side but don't no wat is causin it ,I have had about 5 mri scan and nothin is showin on that I had a the electical test that showed that things wasn't rite so now I'm getin passed on to a neuromuscler disease consultant I feel as tho I'm gettin no were at all I'm not gettin any answers to wat it actully is I get lots of pain in my leg n thigh I have got a big dent in my rigt thigh my leg is very thin to my left leg n also my foot has gone very thin to the extent were my right shoe doesn't fit my foot propley its always slobbin of .I'm so fed up with it I just dnt no were to turn. Can any one help please





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I have Dysferinopathy, LGMD 2B. I had the diagnosis 3 years ago and have still not come to terms fully with what is happening to me. After years of Doctors telling me there was nothing wrong, it was a relief to find out I was not imagining it. Since 2009 I have had no physio, no real support and have had to fight for everything I need to make my life easier, as a result my progression has been quite quick and now I need care from my husband and children. I feel that not many professionals really know about this condition and awareness needs to be made about it !! This condition has not only affected me but my whole family and not in a good way :@( but you just have to get on with it.





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Hi this was a great feature on the show. I work for the Neuromuscular centre in Cheshire, we try to support people with md, with Physio, adaptations, support for the client, family's and personal assistance. There is graphic design training courses and we run a graphic design company employing people who have different types of md. It's a great place for people to meet other people experiencing the same things or to ask questions. You can contact online or call up, Just wanted to post so that people know there is support there :) Stay positive and I am really looking forward to seeing Jon's film :)





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i suffer with numness to my fingers on my left hand and left foot i have been for a mri scan and lumber puncher and that has come back as inconclusive can any one help me





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More Information

Content supplied by NHS Choices

Muscular dystrophy (MD) is a genetic (inherited) condition that gradually causes the muscles to weaken. This leads to an increasing level of disability. Read More »

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