By Jackie, CIDP, United States, February 28, 2019
When I was 14, I woke up one morning with a tingling numbness all over my body. Within a week, I was completely paralyzed, and unable to walk, feed or dress myself, and completely dependant upon my parents. I spent a week in the hospital, with a diagnosis of Guillian-Barre Syndrome. Upon my release from the hospital, I was almost back to normal strength.
A month later, the symptoms returned, and my diagnosis was changed to CIDP. I was unable to attend my freshman year of high school after several weeks of weakness and fatigue. I had IVIG infusions every two weeks. Eventually, my veins were eroded from so much IVIG, so my neurologist switched me to Prednisone.
On Prednisone, I gained about 70 pounds, and acquired a multitude of side effects, including terrible acid reflux, depression, and borderline glaucoma from high eye pressure. After about a year, I couldn't take the side effects any more, and I was weaned off the Prednisone and put on Imuran. Imuran made me lose my hair, but as we tapered the dosage, my symptoms didn't return.
At age 17, after 3 years of battling CIDP, I was considered to be in remission, or burnout, as they now call it.
I am now 38, and in wonderful health. I am a marathoner and triathlete, and I love to share my story about how CIDP has changed my life. You can read my whole story at www.joyfuljogger.com