Ibm In The Family

I'm a 54 year old male in Northeast Ohio and received the official diagnosis of IBM a week ago. It wasn't a major surprise to me. I had been very much aware of the disease and what it looked like for quite some time because my sister was also diagnosed with it several years ago. Although very, very rare, we appear to have a form of it that is hereditary.

Over the last several years various problems were leading me to believe something was seriously wrong. Difficulty walking up stairs, rising from a seated position, and getting into and out of an automobile are just a few. I also have been out of work on disability for two years with breathing problems that my pulmonologist couldn't adequately explain. After falling last August (2011) and damaging my left shoulder to the extent that I required shoulder replacement surgery, I finally decided to try to get to the bottom of it. Luckily, the neurologist my family doctor referred me to was intimately aware of the disease (I hear many doctors don't know much about it) and I received the proper attention and a swift diagnosis.

Much thinking is being done by all the members of my family. My parents had seven kids and two of us have had IBM diagnoses. We're also wondering about a brother who died several years ago who may also have had the disease. The fact that it can be passed on also has everyone's attention although my only child is an adoptee.

I experience no pain with the disease. Breathing problems as well as being unsteady on my feet are my biggest challenges.
OhioJW OhioJW
51-55, M
1 Response May 15, 2012

I am a 65 year old male who was also born and reared in Northeastern Ohio, but now residing in Albuquerque, New Mexico. I was diagnosed with Inclusion Body Myositis three years ago. Historically my genetic pool hails from Jefferson, Monroe and Harrison counties in Ohio. I do indeed wonder if there is a possible inherited defective IBM gene condition in that area? There are however, no other incidences of this disease in my family, as I'm the first.

Physicians here in Albuquerque are quite unfamiliar with this muscular condition. My neurologist has only a general familiarity with it and really doesn't offer any real treatment for the disease. The best he could offer was "the disease may level off and not degrade further". I'm not confident of that diagnosis.

Instability in my legs and ankles are my greatest concern, along with the danger of repeated falls. I now realize that the weakening of my leg and arm muscles can be traced back a good five or six years. At that time, I did not know the reason for my growing weakness. I erroneously thought that it was just a symptom of increasing age. Drastic muscles loss prompted me to seek a diagnosis, which proved to be IBM.

As with all others afflicted with our disease, I can only resolutely face the future and hope for the best.