After a long road with a rare disease, Ron is on the way to recovery with some help from Kootenai Clinic
In 2014 Ron Livingston was hiking with his son while on vacation. Shortly into their walk, his breath became short and he grew tired – something he hadn’t experienced before. Chalking it up to high altitude, Ron let it go until he and his wife Bonnie returned home to Maine.
“He continued to fatigue easily, and it got worse over time,” Bonnie said. “We went through several tests before finally receiving a diagnosis and treatment plan.”
Ron was diagnosed with polymyositis, an uncommon inflammatory disease that causes muscle weakness and began seeing a rheumatologist for treatment. He was treated with IVIg (or intravenous immunoglobulin) which is used to treat immune system disorders, as well as prednisone. For a while, it seemed the medications were working, but after some time Ron experienced a weakening in his muscles and decreased muscle mass. He lost his appetite and over 80 pounds along with it.
“While all this was going on, we were moving to Spokane to be closer to one of our sons,” Bonnie said. “He had just about every test in the book and no one could figure out what was going on. There were times he could barely walk. It was scary; I thought I was going to lose my husband.”
Although the Livingstons initially had problems finding a new provider, they finally came across Michael Coan, M.D., a rheumatologist from Spokane in the transition of joining Kootenai Clinic Rheumatology.
“Dr. Coan never gave up on me,” Ron said. “He called me personally, outside of working hours, multiple times to check in.”
After thoroughly reviewing Ron’s case, and ruling out some possibilities, Dr. Coan came up with the theory that it was Ron’s medication causing his symptoms – that his disease was actually well-controlled.
“Prednisone can cause muscle damage as a side effect, and muscle weakness was Ron’s chief complaint,” Dr. Coan said. “I wanted to confirm my decision to lower his steroids and forego additional tests.”
When Ron’s insurance denied Dr. Coan’s request for additional testing, he turned to the Mayo Clinic Care Network to review Ron’s case and confirm his proposal.
“Having direct access to Mayo Clinic is great for our physicians,” he said. “I was able to work with Ron’s neurologist in Spokane and we submitted an eConsult which confirmed what I was thinking from a neurologist, pathologist, and rheumatologist. In the end, I was able to feel confident in following my instinct and Ron’s outcome, as well as our relationship is better because we went through this process together.”
Dr. Coan is slowly lowering Ron’s medication dosage, and he is now working with a physical therapist to help build back muscle mass.
“I was shocked that Mayo would get involved without us traveling to them,” Bonnie said. “But they did and now Ron is doing much better. He can drive again and he even went to the grocery store with me. We’re hoping to travel back east for the first time since we moved here this spring.”