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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  • 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?
  • 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.
  • 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.......
  • 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
  • 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?

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    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...
  • 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...
  • 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...
  • 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...
  • 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

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    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.
  • deleted_user

    Being normal.

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    I try my hardest to be as normal as i can. having Muscular Dystrophy has made me the person i am and i love the person i am, dont get me wrong but as hard as much as i tell myself that being nirmal doesnt matter i still find myself getting so angry when i cant do things that other kids can do.
  • Monnie45

    fatigue

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    Hi, I have MD2. I don't have any real severe symptoms. I avoid stairs and cannot get up steep curbs without assistance. My life is not severly affected. Several years ago I was also diagnosed with Meniere' Disease but I am skeptical about that. I seem to always have a tight feeling in my head, no actual pain. I also feel slightly light headed. I have thought that could be do to Meniere's...
  • deleted_user

    Stem cell treatment

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    can anyone tell me about their own personal experience with stem cell treatment for duchennes? And those who have not used it and why ? Cost etch? we received devastating news this wknd. It was the worst day of our lives. My nephew who is 4 yrs old was diagnosed w DMD! I am looking for answers to stop this dreadful childhood killer disease. We are all devastated ;(