Patient Stories

Christa’s Story

Hi, my name is Christa and I am 27 years old, and my journey started in 2013.  I had started a new job and noticed intense fiery pain in both my arms.  Instantly I thought, “maybe it’s carpal tunnel” and so my long arduous trips to the doctor began.  Eventually I was sent to a wonderful neurologist, he immediately brought up the possibility of CIDP or other related diseases, which at the time I had never even heard of.  In the following months I went through every EMG, numerous blood tests, MRI’s and spinal taps with possibilities like MS being thrown around. The uncertainty of trying to figure out what was wrong with me left me empty and confused, I felt alone.  My grandmother had MS and lost her battle within three years, I thought I may not have long to live.

In January 2014 I had relapsed terribly within the few days before my final EMG and spinal tap results.  I could no longer lift a pen and struggled to make it through a day’s work typing on the computer.  I hadn’t been able to work out or my passion, running, in months. I lost my appetite and was so fatigued that I had lost 10 pounds on my already small frame.  The day before my diagnosis, it was to the point where I woke up and couldn’t lift up my arms, it was like they were permanently asleep.  When I went to get out of bed I stumbled and struggled to walk the few feet to my bathroom. I couldn’t bath myself, dress myself, prepare food for myself or drive.  I had to be physically chaperoned to the waiting room and the doctor was shocked how rapidly I had deteriorated. I was given an emergency dose of IVIG for four days after that and miraculously could lift my arms again by day five, but the fatigue and numbness continued on and I worked to try and get my strength back.

As a young and healthy woman, the thought of having a debilitating disease, a rare one at that, is not something you worry about.  The diagnosis hit me like a ton of bricks. Will I live? Will I be wheelchair bound? What about my future, can I still have children? You don’t realize how special life is or how shielded we are of something unfavorable happening to us such as a medical issue, until you are the one diagnosed with a disease like this.  At first I was in denial, and felt that this was more of a hassle and “why me?” but I have since then come to terms with my life as it is now and flourishing to the best of my abilities.

I have been receiving IVIG treatments regularly every eight weeks, shuttling back and forth from offices, still working and now fighting with insurance companies as my treatments reside at home.  It has been a long, frustrating and painful struggle filled with enormous fatigue, numbness and sharp nerve pains that are reminders of this chronic aliment. But I have found the strength to be happy again after two years, along with the support from family, friends and my wonderful partner. I am not afraid to tell others of my condition anymore, nor let it hinder my life, and I try to go to local chapter meetings to learn and meet others.  I work full time and go to school to finish up my bachelors in Healthcare Management, I love learning and love waking up every day to prove to myself what I can accomplish, and little does anyone know that behind my otherwise normal outward appearance that my body is in a constant battle, living with CIDP.  It could be a lot worse, and I believe everything happens for a reason.  I have a purpose, yet to find, but I believe that it has something to do with me being diagnosed, a blessing in disguise to live life more fully and to help others alike.  I hope to find that purpose and continue to progress to the point where I can go many months if not years without needing IV treatment or suffering from symptoms.  The future that once seemed so dimly lit now seems bright and endless and I hope that others can see that for themselves too.