FAQ - Muscular Dystrophies, Limb-Girdle
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I have Limb Girdle Muscular Dystrophy and would like to know how others are doing with the disorder,?


for i was diagnosed in 1994...
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I m sorry Dear,I do not have any idea.  (+ info)

Is Limb girdle Muscular Dystrophy????


I am wondering if the condition of Limb Girdle Muscular Dystrophy a genetic disorder?

Thanks.
Does that mean if I have children is there a 50/50 chance I can pass on this disorder?
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Limb-Girdle Muscular Dystrophy

* Age of onset: late childhood to middle age
* Symptoms: Muscle wasting and weakness, beginning from the shoulder girdle and pelvic girdle
* Rate of Progression: Slow
* Expected Lifespan: Varies, death is usually due to cardiac or respiratory complications


Limb-Girdle Muscular Dystrophy
Many forms of LGMD have been identified, showing different patterns of inheritance (autosomal recessive vs. autosomal dominant). In an autosomal recessive pattern of inheritance, an individual receives two copies of the defective gene, one from each parent. The recessive LGMDs are more frequent than the dominant forms. The dominant LGMDs usually show adult onset. Some of the recessive forms have been associated with defects in proteins that make up the dystrophin-glycoprotein complex.  (+ info)

Limb-Girdle Muscular Dystrophy-Putting on muscle?


I was wondering if it's possible to put on any muscle. I understand that it would be minimal, but I'm hoping if I start a workout routine I'll at least have some improvement or definition. Thanks.
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My boyfriend also has limb-girdle muscular dystrophy, and he's convinced that he can put on muscle.. I'm not so sure.

All I will say is that you have to be careful not to overdo it, because you can damage yourself more overdoing the exercise. I think maintenance is certainly something to aim for, but I don't know about improvement in muscle mass.

If you have a specialist, you should speak to them about this.. I'm not an expert, but I hope that helps!  (+ info)

Since the penis is a muscle (i think!) would it be affected in the case of Limb-Girdle Muscular Dystrophy?


My friend with LGMD has lost use of his lower extremities but still has full use of his upper body, including his arms. He is not yet confined to a wheelchair however he really should be. He's still struggling (a lot!!!) using only his crutches (along with many household helpers i.e., "grabbers, a walker...) and he receives a lot of help from friends and family! He can still have sex but it kind of seems like "it" doesn't work as well as it used to. He is 47 yrs. old so it also could be just that he's getting a little older. The overall difference is not an obvious one so it could also just be my imagination. Is the penis actually considered a muscle? I would think that if it is, he wouldn't have ANY use of it, which he does.
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The brain, the intellect and the senses are unaffected in LGMD. People with LGMD can think, see, hear and feel sensations as well as those without muscular dystrophy. They maintain control over their bowel and bladder functions, and sexual function is normal.  (+ info)

Have Researchers From Other Countries Found A Link Between Agent Orange And Muscular Dystrophy?


Is there any known research showing a connectiion between Agent Orange and muscular dystrophy? Are there any test which have been done by researchers from other countries outside of the United States ,who have done test on Agent Orange as well?. The reason why I am asking this question is because I suffer with Limb Girdle Muscular Dystrophy. I served with the Third Marine Division, First Marines, Fourth Battalion, D Company. As a mortarman in 60 mortars. I was in Viet Nam from August 14, 1968 to September 3, 1969. I was exposed to Agent Orange while in serving in combat in the field. In Corps I this was the second heaviest place sprayed with Agent Orange, besides Corps III. I was not born with this disease, nor was anyone else in my family.
I had the EMG'S, biopsy and blood test for neuromuscular problems. Tests showed nerve and muscle atropy problems.

I would appreciate your response. I hope this is detailed enough for you.
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First of all, let me thank you for your service to our glorious country. My Father served in Viet Nam by the Perfume River and he recently got full disability from the VA for his exposure to agent orange. He has prostate cancer and cancer in his bones. It was through talking to a friend over this last year that he found out he might could be compensated for it. Contact your local Amvets office and see if you can get a representative to go between you and the VA.
There were other agents used there such as agent purple that you may want to check into. The web is a marvelous way of finding all this good stuff out. Let me start you off with this website, and then look into the different agents that they used. Good luck my man!

Also, I found this today...perhaps it will lead you where you need to go:

Agent Orange and Parkinson's
I received this info today and am passing it on.......

I am a retired/E-7 who spent 3 tours in Vietnam and to all Vietnam veterans I ask support in getting the following information out to all. There is a group called “Vietnam veterans with Agent Orange/Parkinson’s” that has intensely researched and sought support from their congressmen and senators. We have congressmen Tim Walz of Minnesota and Bob Filner of California, (chairman of the Veterans Affairs committee) that have drawn up a bill to place Parkinson’s on the presumptive list of diseases caused by Agent Orange. Please have all who have Parkinson’s that served in the nam- notify their congressmen and senators to please support the bill that will be coming out September 4, 2007. For more information please contact Steve Fiscus email [email protected] Please harmony in good health to all fellow Vietnam veterans.  (+ info)

Can anyone tell me about pregnancy and Muscular Dystrophy?


My friend just found out she's pregnant and she has limb girdle/FSH MD. I think some people in her life aren't quite sure how to react because they're afraid of what the pregnancy might mean for her body and how effectively she'll be able to parent. She's having this baby, so I support her 100% and am looking for resources or first-hand accounts to share with others related to childbearing with MD. Thanks!
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My close friend got diagonosed with MS a few months after she had had her first child (a son). She went quite quickly from a slight limp to nearly dragging her foot and it was heartbreaking to see.

She and her husband decided not to have any more children because she was told that pregnancy can make your MS worse. I don't know it that is true, but that is what she was told by her MD.

One issue I saw firsthand was when her son was 2 years and older - she couldn't enforce things physically. (Her son could run faster than she could.) For example, they came over for a playdate and it was time to go. When she said, "Time to go" to her son, he just ran from her. Without my help, she would have had to wait until he was ready to listen.

There are many situations in which sometimes I must physically help my son listen (cleaning up toys, getting off the kitchen counter, stopping wrestling his brother, etc.) and I know that having MS would make that difficult.

All the best to your friend.  (+ info)

Can anyone help me find statistics on Muscular Dystrophy?


I need to find(an estimate) of:
# of people affected, and killed by Muscular Dystrophy. I'd say, Just in the United States at least.
I've got 4 main types and a small estimate of those afected, but i'm not sure if these numbers are correct: Duchennes-1 in 30,000 males, Beckers, 1 in 3,500 males, Limb Girdle in the low thousands, and facioscapulohumeral for 1 in every 20,000.
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Hi there! May be able to help you out a little.. my boyfriend of 7 years has limb-girdle muscular dystrophy, so I have done a little research on it myself..

While Lou Gehrig's disease (ALS) and Marie-Charcot-Tooth present with SIMILAR symptoms to Muscular Dystrophy, due to their cause they are not categorised as muscular dystrophies. They affect motor neurons and nerves which control muscles respectively, whereas dystrophies are actually caused by the muscle cells themselves breaking down.

According to the UK's main muscular dystrophy site, there are about 60,000 people in the UK with muscular dystrophy and related conditions.

The official "Muscular Dystrophy Types" include:-

Duchenne's Muscular Dystrophy (DMD)
Becker's Muscular Dystrophy (BMD)
Limb-Girdle Muscular Dustrophy (LGMD)
Emery-Dreifuss Muscular Dystrophy (EDMD)
Congenital Muscular Dystrophy (CMD)
Oculopharyngeal Muscular Dystrophy (OPMD)
Facioscapulohumeral Muscular Dystrophy (FSHMD)
Distal Muscular Dystrophy
Fukuyama Muscular Dystrophy (found almost exclusively in Japan)

Related conditions include myopathies, myotonias, and hypotonias, as well as spinal muscular atrophies.

I've found some information about the occurrence of MD in the population, but I can't put them in any sort of logical order.. sorry! I'll put them in point form.

Also look at http://www.wrongdiagnosis.com/m/musdys/stats-country.htm and http://www.wrongdiagnosis.com/m/musdys/prevalence.htm - these websites have extrapolated data which you should be careful of, but it could be helpful!

* Duchenne's Muscular Dystrophy (the most "deadly" form of MD) occurs in about 1 in 3200 live male births. The risk of a non-hereditary form of DMD is about 1 in 12000. About 1/3 of all Duchenne's cases are not genetic. About 70-80 % of female carriers can be identified, and the chance of identifying a female carrier is better the younger the girl is when being tested.

* In Australia - the incidence of "Muscular Dystrophy" is estimated to be 100 per 100,000 head of population. Based on current figures (1995), it is estimated that there would be in excess of 20,000 people in Australia who have some form of neuromuscular disease. The incidence of Duchenne muscular dystrophy (DMD) is estimated to be 1 in 4,000 live male births is by far the most common form of neuromuscular disease.

*There is no part of the world where MD is more common than another.

* DMD and BMD are single gene disorders caused by a malfunctioning gene on the X chromosome. They are both recessive diseases , and therefore occur much more commonly in males than females. This is because two defective chromosomes must be present for the disease to occur in females, whereas only one is required in males. The occurrence of DMD is about one in 3500 males, while BMD is much less common, with an occurrence of one in 20 000 males. (http://genome.wellcome.ac.uk/doc_wtd020864.html)

* 500 - 600 male newborns are diagnosed with muscular dystrophy each year in the US, Duchenne and Becker types.

* The muscular dystophies are the most common form of hereditary disease. The most common form of muscular dystrophy is Duchenne muscular dystrophy, followed by facioscapulohumeral and myotonic. The approximate incidence is as follows:
DMD: 1 in 3300 live male births
BMD: 1 in 18000 live male births
Congenital myotonic dystrophy: 1 per 10 000 births
FSHMD: Prevalence of 1 in 20,000
http://www.virtualmedicalcentre.com/diseases.asp?did=794

* A 2008 analysis of rare diseases listed FSHD as the most prevalent form of MD at 7/100,000.- http://en.wikipedia.org/wiki/Facioscapulohumeral_muscular_dystrophy

Hope that helps out a little.. good luck! I know a few of the stats contradict each other, but make what you can of them!  (+ info)

When i masturbate , it ends with headaches and muscular stress in my lower limb. Is there any connection b/w?


every time when i masturbate one of the things happen for sure.
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The headaches are probably circulation - blood pressure related and IMO should be talked about with your doctor.

The muscle ache is either from going for a very long time or staying tensed up for a while. Both of these things can be controlled by you.  (+ info)

why muscular dystrophies affect some muscles and not others?


There are VAST amount of different types of MD. Each one attacks its own set of muscles. Check out the link from the source.  (+ info)

is it possible to regain muscle mass after years of having muscular dystrophy?


the muscle wasting seems to have ebbed,but now i'm left w/little left on my upper body,thighs,and hips (limb-girdle dystrophy)
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It can only help to engage in a rigorous weight training program. I say go for it. Here is a sight that can get you started:

http://www.exrx.net/Exercise.html

Good luck  (+ info)

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