My Participatory Medicine Story: Osteonecrosis / Avascular Necrosis

My name is Alexandra Albin (msaxolotl on Twitter) and I have an orthopedic condition called osteonecrosis or avascular necrosis (AVN). AVN is a painful and debilitating bone disease that typically affects long bones, is caused by a loss of blood supply to the bone, and can lead to bone degeneration and the collapse of joint surfaces. AVN can happen for many reasons. In my case it was the result of medications — steroids —given for a misdiagnosed condition of Multiple Sclerosis (MS) in 1994. That was my third strange neurological episode over several years of what was suspected to be MS, but never confirmed. One spinal tap was positive with white blood cells, but not enough to be clinically significant. Each episode took several months for me to recover. The 1994 episode was my worst symptomatically: I had a paralyzed bladder for a few a months. It was awful. I only knew I had to urinate when my bladder was over 800 cc, which is quite abnormal for woman. (We normally experience a full bladder between 300 and 500 cc.) I had to learn to self-catheterize. Although my MRIs were clear, two evoked potential tests (which show how nerves conduct along their pathways) were abnormal. As time went on during this episode things got worse: I started having problems with my left leg, I would stumble and fall over, and I started dropping things with my left hand. My doctor neurologist at UCLA went back through my history and saw the series of strange events over the years. Although the ...
Source: Society for Participatory Medicine - Category: Journals (General) Authors: Tags: Member Updates Newsletter Alexandra Albin AVN CEO of my own body osteonecrosis paralyzed baldder participatory medicine vascular Necrosis Source Type: news