Becky was diagnosed with Myositis in the spring of 2006.  However, she had been complaining of some weakness in her legs for years before this.  It was only when it got worse that she saw a doctor.

Myositis is the medical term for muscle inflammation. In myositis, inflammation damages the fibers of a muscle. This causes muscles to be weak by interfering with the ability of the muscles to contract. Although myositis can cause muscle aches and muscle tenderness, weakness is usually the dominant symptom.  In some cases, myositis is a short-term problem that goes away after a few days or weeks. In other cases, it is part of a chronic (long-term) condition. Chronic forms of myositis can lead to muscle atrophy (wasting and shrinking) and severe disability.

Most of the evidence suggests that polymyositis and dermatomyositis are autoimmune disorders, illnesses in which the immune system mistakenly attacks the body's own tissues. The muscles of people with inclusion body myositis contain an abnormal protein called amyloid, but the reason it forms is unknown. This amyloid protein is similar to the protein deposited in the brains of people with Alzheimer's disease, and some experts believe that the two diseases may develop the same way. In inclusion body myositis, the muscle also contains tiny structures that resemble viral particles (called inclusion bodies), although no viral infection has been consistently identified in association with this disease.

Becky was originally diagnosed with polymyositis.  This form of myositis is usually responsive to steroids.  But, in her case, this treatment had no effect.  Over time, she tried additional treatments including methotrexate, Enbrel, Imuran, infusion treatments, etc.  All either had terrible side effects or had no disease improvement.

Although myositis is not life threatening, related issues can cause death.  In her case, the related issue was dysphagia which is the weakness in the esophagus which makes swallowing difficult.  In fact, for the past four months of Becky’s life, she was fed through a tube in her stomach and had nothing by mouth (no food or drink).  When food, drink, or other goes down the wrong pipe into her lungs, this is called “aspiration”.  When this occurs, this leads quickly to pneumonia.  And, pneumonia can be life threatening.

I recall the trips that Becky made out to the Johns Hopkins Medical Hospital in Baltimore.  I accompanied her on some trips, but she made other trips on her own.  She even took time to see a Baltimore Oriole game by staying in a hotel across from Camden Yards.  At the time, she could walk but needed lots of help stepping up on a curb or step.  They had a group of so called specialists there and we had high hopes.  But, in the end, they were not able to help Becky.

Becky had multiple muscle biopsies to better identify the disease.  Most recently, with  results interpreted by the University of Chicago Medical Center, she was told that the biopsy was consistent with “inclusion body myositis” (IBM).  We had suspected this.  In fact, the IBM diagnosis is often given only after all of the treatments for polymyositis have failed.  Then, through the process of elimination, the diagnosis of IBM is given.

Becky’s rheumatologist told her that “he was not sure what else to do”.  Looking at the current literature in our own studies, there is currently no effective treatment known for IBM.  So, doctors treat the symptoms only such as giving physical therapy and such.