Muscular Dystrophies Support Group

The muscular dystrophies are a group of genetic and hereditary muscle diseases; characterized by progressive skeletal muscle weakness, defects in muscle proteins, and the death of muscle cells and tissue. In some forms of muscular dystrophy, cardiac and smooth muscles are affected. The muscular dystrophies are the most-known hereditary diseases... There is no known cure for muscular dystrophy. Inactivity (such as bed-rest and even sitting for long periods) can worsen the disease. Physical therapy and orthopedic instruments (e.g., wheelchairs, standing frames) may be helpful. Duchenne muscular dystrophy (DMD) (also known as muscular dystrophy - Duchenne type) is an inherited disorder characterized by rapidly progressive muscle weakness...

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  • grylls33

    How do people deal with muscular dystrophy!!

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    some times i have these mini breakdowns because i cant do what normal people do! How does anyone else cope with these sort of things? 
  • Lauriegirl

    Leukodystrophy

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    I have this disorder of MD. My leg muscles become so weak nearly all the time.
  • deleted_user

    looking for friends with md

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    hi my name is michael i am 45 years old i am looking for penpals and friends i have cmt i am in a wheelchair i cant walk i would like some one to talk tocassandra mahoney/co michael mahoneypo box 5351galt ca 95632
  • pk43

    Struggling with Muscular Dystrophy, Will to Live

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    Hello. My name is Puneet. I am 32 and have Limb-Girdle Muscular Dystrophy. I also sufffer from Depression, Anxiety and alcoholism. I am weak, I have barely eaten or slept in weeks and just hate my life. I am weak, I am lonely, I hate my job, I hate my life, I just wish that I were dead. Someone please help me.
  • mostfing7

    I call for help

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    I call for help i, suffer from muscular dystrophy -duchenne -my health situation is critical and in continuous  deterioration. I'm hardly able to sit down dpending  on the help of others which is not always available I can not afford for an electrical chair to help me move and help myself I'm from Egypt and I couldn't get any sort of support or assistance as you know humanity has no...
  • hla

    Stevie's tribute

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    I thought I might share my sons tribute on this blog. https://youtu.be/kTKrjziv7i8Stephen Samuel Adams was born February 22, 2012. He lived with an aggressive form of muscular dystrophy. But, surrounded by the persistent love of his parents and siblings, Stephen far exceeded the expected limitations his illness imposed on him. When he had changed all of our lives, brightened our spirits and...
  • radiumgirl

    Is anybody out there?

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    Does anyone even come to this support group? I've noticed that there hasn't been any response to some older discussions. What's the point of having a support group with no support? Just asking.......
  • radiumgirl

    Just starting down this road.

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    Last Thursday I saw my neurologist for the first time. I was referred due to loss of strength and dexterity in my left hand. My family referred me thinking it might be carpal tunnel even though it didn't present like normal carpal tunnel. After testing with the electrodes and the needle in the different muscle groups, she told me that I have a rare myopathy. It's very slow progressing and...
  • lmp2139

    Any Advice?

    1
    My main symptoms are muscle tightness/cramping and weakness, joint pain, fatigue, sensitivity to light/sound/smell, twitching, brain fog, burning pain in the hands and feet, and visceral pain. The muscle tightness started in my left leg, and spread to my right leg and arms after a week or so. The doctor said my strength seems okay except for my neck which seems weak.All of my blood work has...
  • sammimurphy

    I can cope but than I can't...

    3
    This is my first time here and I'm pretty glad I found this place. I just hope it's active enough. I was diagnosed with FSHLG Muscular Dystrophy at the age of 8. I'm 26 years old now and I find myself falling into this ridiculous fits of depression over the MD. At times, I'll be fine. I'll be happy and not even give the MD that plagues my life a second thought. But other times, I'm very sad and...
  • deleted_user

    Limb Girdle Muscular Dystrophy

    After many tests/ biopsies, I was diagnosed 8 years ago with LGMD, this was devastating for me and my family. The decline was not so noticeable to start with but realise each year Im able to do less as my legs/arms get weaker. Im lucky to live quite a normal life compared to others with this condition, though have trouble with stairs, cant run, walk slow and other things that make life...
  • lmp2139

    Anyone else have a similar experience?

    0
    My main symptoms are muscle tightness/cramping and weakness, joint pain, fatigue, sensitivity to light/sound/smell, twitching, brain fog, burning pain in the hands and feet, and visceral pain. The muscle tightness started in my left leg, and spread to my right leg and arms after a week or so. The doctor said my strength seems okay except for my neck which seems weak.All of my blood work has...
  • jrasm876

    Possible Limp Girdle MD diagnosis

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    I'm 26yo male, I have been dealing with neck pain and muscle weakness with my paracervical muscles for probably 8 years now. I've developed severe OCD associated with my neck pain which makes it worse and is impossible to control. My doctors have been trying to find a diagnosis for my pain which has varied from cervicalgia to thoracic outlet syndrome to dystonia and now to limp girdle MD. I have...
  • Monnie45

    Unstableness

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    Hi, I have a question. I was diagnosed with MD 2 probaby about 5 years ago. Before that I was also diagnosed with Meniere's Disease. I was having the feeling of being on a boat and went to see an ENT. I was skeptical since I wasn't having the typical symptoms of Meniere's. I don't,r have the sensation that the room is twirling nor do I have tinitus. I do however have some mild to moderate hearing...
  • Monnie45

    lightheadedness

    0
    Hi, I have had a problem for years and wonder if this could be from the MD 2. I have complained of a tight feeling in my forehead, no pain. I rarely have headaches. Along with that, I have a slight lightheaded feeling and feel my ba;ance is off. I haven't fallen recently "knock on wood." It is annoying, though.