Don's Story

Photo of OHSU Brain Institute ALS patient DonIn the winter of 2015, I started getting pain across my back and down my arms and legs. Over the next several months, it worsened. I wasn't sleeping, I was pacing every night. Then I lost strength; I couldn't get out of my chair. I could barely use a walker. Pain pills didn't work. I had several visits to the local emergency room and hospital for multiple test, saw several specialists and doctors before ending up going to a neurologist. Then my brother-in-law (a recently retired neurologist from OHSU) suggested I have my local neurologist refer me to the OHSU Brain Institute, where I met with Dr. Karam.

I thought he was very good and helpful; he really seemed to know what he was doing. Did all kinds of tests - a complete physical, nerve conductivity, spinal tap - which gave us a diagnosis: chronic inflammatory demyelinating polyneuropathy (CIDP). My body's immune system was attacking the myelin, the covering protecting the nerves. It made me immediately feel better to know I had a diagnosis.

Once you know something's going on, you don't want to wait. I was admitted to OHSU, where I spent five days getting treatment that included steroids and intravenous immunoglobulin (IVIG) to help suppress my immune system. Everyone was great; I thought they all worked together very well. I met new people every day, and one thing I also noticed was that they did a good job sharing information from one shift to the next.

I still have IVIG treatment every two weeks. I take steroids, but will be stopping the near-future. I'll always have CIDP, but there is a large variation in how people recover. I was basically homebound before my diagnosis, and now I have strength to get up and down the steps. I only need a cane when I go outside. I've been very fortunate.