Highs -n- Lows Living with the Disease

Thursday, February 14th

Happy Valentines Days!

I've been trying to get everything unpacked and put away since we returned from our trip, have been doing laundry and cleaning up around the house...

I continue to educate myself and found this article in the NY Times...

For tens of thousands of Americans afflicted with inflammatory muscle diseases, simple tasks may be overwhelmingly difficult or fatiguing. Even before they know what is wrong, they may have difficulty raising an arm, climbing stairs, getting up from a chair or even raising the head from a pillow. Prolonged standing or walking can exhaust them, and even swallowing and breathing may be impaired.

The main causes of these symptoms are two conditions, polymyositis and dermatomyositis. Although few have heard of these diseases, together they are at least as common as amyotrophic lateral sclerosis, which is more widely known as Lou Gehrig's disease, and just as mysterious.

What is more, unlike A.L.S., inflammatory muscle disease can afflict children. Dermatomyositis is the most common muscle disease in children under 15 years old. The good news is that while there is no known cure or preventive, the symptoms can be well controlled in many patients. And in some, including about one-third of childhood victims, the disease disappears as mysteriously as it developed.

For others, unfortunately, myositis (pronounced my-o-SITE-us) is slowly progressive and eventually severely disabling. In some cases, it is even fatal. Ricky Bell, a former running back for the Tampa Bay Buccanners, died in 1984 from the complications of inflammatory muscle disease.

The causes of polymyositis and dermatomyositis are unknown, but doctors do know they are autoimmune diseases, illnesses inflicted upon the body by the same immune defenses that are supposed to protect the body from unwanted visitors.

Other autoimmune diseases, in which the immune response runs amok, include lupus and rheumatoid arthritis. By studying myositis, researchers may gain new insights into the causes of these and other autoimmune conditions and eventually learn how to reprogram the immune response to make it work once more for, rather than against, the patient. Possible Triggers

Few experts believe there is one cause or even just a few causes of inflammatory muscle diseases. Rather, a number of factors seem to initiate these conditions.

Researchers are exploring two main possibilities. One is that organisms somehow change muscle cells to make them appear foreign to the patient's immune system. The second is that the infectious organisms share molecular structures with muscle tissue and prompt the immune system to misdirect its attack.

For example, cocksackievirus is composed of RNA, the genetic messenger chemicals needed for the manufacture of new proteins. Researchers at Cold Spring Harbor Laboratory, whose studies are supported in part by the Muscular Dystrophy Association, have found antibodies in the blood of myosites patients that attack enzymes involved in cellular RNA functions.

Certain drugs, too, have been linked to inflammatory muscle diseases. They include clofibrate (used to lower cholesterol), vincristine (an anticancer drug), alcohol and heroin and, ironically, corticosteroids, the very immune-suppressing drugs used to treat myositis.

People who are already afflicted with one autoimmune or connective tissue disorder may have an increased risk of developing one of the inflammatory muscle disorders as well. Adult patients may also be more likely than others to have cancer, further suggesting that myositis involves a breakdown in immune defenses. The Clinical Picture

Though in children, the most common form is dermatomyositis, which causes a characteristic rash that simplifies diagnosis. Most often, childhood dermatomyositis begins in January, February or March, suggesting that a viral infection is a common trigger.

Symptoms of muscle weakness, the hallmark of inflammatory muscle diseases, may come on suddenly, like the flu, or insidiously over weeks or months. Before noticing weakness, the patient may experience unexplained fatigue or modest weight loss. Only about half of patients suffer muscle pain.

As the disease progresses, patients typically have difficulty walking and may eventually need a wheelchair. Wasting of muscle tissue, however, is not usually noticeable until late in the disease. Other symptoms may include difficulty chewing or speaking, weakness of the muscles in the chest that could lead to respiratory failure, and abnormalities of the heart or gastrointestinal tract.

Another great day!