This is a recent photo on my 69th birthday. The first thing you may notice is the muscle tissue in my forearms are gone, just hanging skin. I have very little strength remaining in my hands, wrists and feet which for a long time I thought was arthritis developing in my extremities. Turns out, not to be the case. My quadriceps muscles, the large muscles on the front part of the thighs, have weakened to the point it's becoming a real challenge to stand up from a sitting or lying position. When I first begin to notice these developing symptoms, almost six years ago, I was scared to death that it might be ALS. However, the diagnosis of Sporadic Inclusion Body Myositis now has been confirmed by three Neurologist from Emory and The VA. They still want to do a nerve and muscle biopsy to be sure.
There is good news though! Life is Good! I've been told that this rare muscular degenerative disease should not shorten my life expectancy. However, the probability of me ending up in a wheel chair in a few years is very likely. The best news of all is it is not believed to be genetic or hereditary and this is the reason I wanted to post this information on the family blog primarily for the benefit of my children and my10 grandchildren. As I understand it, there is an autoimmune factor involved and it happens to mostly men past the age of 50. They don't know the cause or cure.
What is inclusion body myositis (IBM)?
Inclusion body myositis (IBM) is an inflammatory and degenerative muscle disease that causes painless weakening of muscle.
IBM gets worse slowly and is sometimes misdiagnosed as treatment-resistant polymyositis, another inflammatory muscle disease that causes muscle weakness. IBM also may be misdiagnosed as amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease).
Symptoms of the disease usually begin after the age of 50, although the disease can occur earlier. IBM occurs more frequently in men than in women and is the most common muscle disease in people aged 50 and older.
What are the symptoms of inclusion body myositis (IBM)?
In IBM, the onset of muscle weakness usually is gradual, occurring over months or years.
Weakness of the wrist and finger muscles.
Atrophy (shrinking or wasting) of the muscles of the forearms.
Weakness and visible wasting of the quadriceps muscles (the large muscles on the front part of the thighs.)
Weakness of the lower leg muscles, below the knees.
Weakness of the esophageal muscles, which can cause dysphagia (difficulty swallowing) in about 30 to 40 percent of patients.
Weakness of other muscle groups as the disease progresses.









