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Lou’s Story - Lou's Lifesavers
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Lou was diagnosed with FSHD and LGMD in February of 2018. With visits to many doctors to find out why he was always cramping and why his body ached was getting frustrating. Long story short. He had gone to see one provider, Dr. Michelle Mellion. She told him she wanted him tested for MD. She noticed changes in his shoulders and other symptoms that prompted this concern. He had gone to see Dr. Greg Sachs. Another fine doctor who explained that there were several types of tests they could do. One being a muscle biopsy which he didn’t feel was necessary at the time because of the pain and time it was going to take to heal. There was one other test that they could do and it was a blood test. However, it needed to be sent to University of Iowa to be analyzed. The catch was that it also had to be collected and received by a Tuesday as the tests could only be done Tuesday, Wednesday or Thursday’s. We had gone and had the bloodwork done, 5 vials, and they were sent off. We waited and waited for what seemed like forever. We finally got the results and it was positive. Lou had Facioscapulohumeral Muscular Dystrophy and Limb Girdle Muscular Dystrophy. And so it begins, our journey with finding a cure or comfort level for my husband.
What is facioscapulohumeral muscular dystrophy?
Facioscapulohumeral muscular dystrophy (FSHD) is a genetic muscle disorder in which the muscles of the face, shoulder blades and upper arms are among the most affected.
The long name comes from facies, the Latin word and medical term for face; scapula, the Latin word and anatomical term for shoulder blade; and humerus, the Latin word for upper arm and the anatomical term for the bone that goes from the shoulder to the elbow.
The term muscular dystrophy means progressive muscle degeneration, with increasing weakness and atrophy (loss of bulk) of muscles. In FSHD, weakness first and most seriously affects the face, shoulders and upper arms, but the disease usually also causes weakness in other muscles.
What are the symptoms of FSHD?
FSHD usually begins before age 20, with weakness and atrophy of the muscles around the eyes and mouth, shoulders, upper arms and lower legs. Later, weakness can spread to abdominal muscles and sometimes hip muscles.
Some experts divide FSHD into adult-onset and infantile-onset forms. The adult-onset (which includes FSHD that begins in adolescence) is far more common.
In either type of FSHD, facial weakness can start in childhood. Occasionally, other FSHD symptoms appear in early childhood. Infantile-onset FSHD generally runs a more pronounced course with regard to muscle weakness and sometimes also affects hearing and vision. Preliminary evidence suggests that the infantile-onset form is associated with a larger piece of missing DNA.
What is limb-girdle muscular dystrophy?
Limb-girdle muscular dystrophy (LGMD) is a diverse group of disorders with many subtypes categorized by disease gene and inheritance. LGMD usually manifests in the proximal muscles around the hips and shoulders. (The proximal muscles are those closest to the center of the body; distal muscles are farther away from the center — for example, in the hands and feet).
The shoulder girdle is the bony structure that surrounds the shoulder area, and the pelvic girdle is the bony structure surrounding the hips. Collectively, these are called the limb girdles, and it is the observed weakness and atrophy (wasting) of the muscles connected to the limb girdles that has g What are the symptoms of LGMD?
The unifying features of the LGMDs are the weakness and atrophy of the limb-girdle muscles. However, the age at which symptoms appear, and the speed and severity of disease progression, can vary.
Individuals may first notice a problem when they begin to walk with a “waddling” gait because of weakness of the hip and leg muscles. They may have trouble getting out of chairs, rising from a toilet seat or climbing stairs. As this weakness progresses, the person may require the use of assistive mobility devices.
Weakness in the shoulder area may make reaching over the head, holding the arms outstretched or carrying heavy objects difficult. It may become increasingly hard to keep the arms above the head for such activities as combing one’s hair or arranging things on a high shelf. Some people find it harder to type on a computer or other keyboard and may even have trouble feeding themselves.
Some of the various LGMD subtypes also are characterized by additional symptoms. For example, the heart can be affected in some types of LGMD, with weakness of the heart muscle (cardiomyopathy) and/or abnormal transmission of signals that regulate the heartbeat (conduction abnormalities or arrhythmias).
Some disease subtypes also involve the muscles used for breathing, and for that reason, respiratory function, along with cardiac function, should be monitored regularly.
Other symptoms may be present in some of the different subtypes of LGMD, including but not limited to: joint stiffness, muscle cramps, enlargement of calf muscles and involvement of distal muscles of the body such as those controlling the hands and feet.
What is the progression of LGMD?
At this time, progression in each type of LGMD can’t be predicted with certainty, although knowing the underlying genetic mutation can be helpful. Some forms of the disorder progress to loss of walking ability within a few years and cause serious disability, while others progress very slowly over many years and cause minimal disability.
LGMD can begin in childhood, adolescence, young adulthood or even later. Both genders are affected equally.
When limb-girdle muscular dystrophy begins in childhood, some physicians say, the progression is usually faster and the disease more disabling. When the disorder begins in adolescence or adulthood, they say, it’s generally not as severe and progresses more slowly.
See Current Fundraiser for Muscular Dystrophy Here
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