Inclusion Body Myositis ("IBM")
Inclusion body myositis (IBM) is one of a group of muscle diseases known as the inflammatory myopathies, which are characterized by chronic, progressive muscle inflammation accompanied by muscle weakness. The onset of muscle weakness in IBM is generally gradual (over months or years) and affects both proximal (close to the trunk of the body) and distal (further away from the trunk) muscles. Muscle weakness may affect only one side of the body. Falling and tripping are usually the first noticeable symptoms of IBM. For some individuals, the disorder begins with weakness in the wrists and fingers that causes difficulty with pinching, buttoning, and gripping objects. There may be weakness of the wrist and finger muscles and atrophy (thinning or loss of muscle bulk) of the forearm muscles and quadricep muscles in the legs. Difficulty swallowing occurs in approximately half of IBM cases. 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.
Unfortunately, there is no cure for IBM, nor is there a standard course of treatment. The disease is generally unresponsive to corticosteroids and immunosuppressive drugs. Some evidence suggests that intravenous immunoglobulin may have a slight, but short-lasting, beneficial effect in a small number of cases. Physical therapy may be helpful in maintaining mobility. Other therapy is symptomatic and supportive.
IBM is generally resistant to all therapies and its rate of progression appears to be unaffected by currently available treatments.
Obtaining Disability Benefits.
Because IBM typically fails to respond to any known treatment, it is usually progressive in nature and likely to lead to disability. It may impair standing, walking, sitting, lifting or carrying and can result in being unable to perform even a sedentary ("desk") job.
Neurologists and rheumatologists are typically the kinds of doctors that can diagnose this condition and help document its findings in order to help you with your disability claim under the Social Security Administration (SSDI) or an employer-based group disability plan (ERISA).
It is important to distinguish IBM from other inflammatory myopathies, such as polymyositis, because polymyositis can usually be treated successfully, and IBM cannot. That's usually done by performing a muscle biopsy.
Essential Medical Documentation of IBM for Disability Benefits Needed:
- How far can you walk?
- How long can you stand? Do you need a cane/walker to ambulate?
- How much can you lift and carry?
- Do you have difficulty reaching, bending, squatting, stooping? Describe.
- Do you have grabbing or grasping difficulty (dropping things)?
- What medications do you take? Side effects of medication?
- Do you have objective tests confirming IBM such as a muscle biopsy, EMG, lab tests, x-rays/MRIs
- Do you have documented muscle weakness on examination?
- Are you doing physical therapy?
SSA utilizes the term "Impairments" (and resulting "limitations" - why you cannot work) are the essential bits of information that must be clearly and consistently documented throughout your medical history by the treating sources (medical doctors, psychologists, psychiatrists).
SSA additionally utilizes the term "Residual Functional Capacity" (RFC); this is a key concept related to the resulting physical and/or mental impairments from conditions for which the disability claim is based upon and the impact upon ability to work.
SSA has its own forms that are used for Physical RFC here. These forms can be filled out by the treating source who has the opportunity to examine the patient and understand the limitations which result from his/her condition and thereby document with specificity in the language of SSA disability.