Tomasa's Story

Photo of OHSU brain institute patient TomasaIn July 2016, I was having problems walking. My muscles were getting very weak. Although I was not in any pain, I was just getting weaker and weaker. Everything came on so fast.

I couldn't walk to get to my doctor's office; I had to go in a wheelchair. I couldn't brush my hair. I couldn't dress myself. I couldn't lift my arms to eat. My doctor ordered blood tests and they showed my creatine level was much higher than it was supposed to be. I stopped my medications, including cholesterol medicine. When I had my creatine retested a week later, it was lower—but still very, very high. My doctor thought it might be a neuromuscular condition.

I made an appointment with Dr. Chahin at the OHSU Brain Institute. My first impression was that he was very smart. His attitude was that we would get to the bottom of this, and fix it. I felt like I was in good hands. He immediately set up tests including a muscle biopsy, a CT scan, blood work, X-rays and a bone density test. I was diagnosed with autoimmune necrotizing myopathy, an acquired muscular disease. The cholesterol medication had caused an inflammation of my muscles.

We live almost five hours away, and so he got me started with treatment that day. In fact, he and the team have always been good about setting up our appointments so we have enough time to make the journey to and from OHSU. I have regular intravenous immunoglobulin (IVIG) treatments at home now. Right now, I'm down to having them every other week.

Due to the lack of muscles in my legs, I could not get up and down my stairs in the house; I spent two and half months in my bedroom. My goal was to be able to get down my stairs and help cook Thanksgiving dinner. That was the happiest day when I accomplished that goal. In July, I gave up driving because my hands wouldn't work on the steering wheel, but by autumn I was able to drive my car again.  

Last time I saw Dr. Chahan, he said I was about 95 percent back to normal. We are gradually working me off of the IVIG and steroid medication. He and I were both so excited when I was able to walk into my appointment and not use a wheelchair. He is very prompt with correspondence: When I had started treatment, he would text me to make sure everything was going okay, and on MyChart, he responds within 24 hours.

I used to walk two miles every day, and I am looking forward to getting back to that. I am amazed and very thankful. My advice is this: If you think you might have a problem, talk to your doctor and get any necessary tests to help put you on the right track.