Hey, my name is Elizabeth Landrum I was diagnosed with CIDP in August of 2016. I'm from New Orleans, LA.
I was a healthy 35 year old when my symptoms started, beginning my training to become a yoga instructor. I woke up one morning in late June having numbness in my hands and feet, and noticed that I was a little clumsy, nothing too alarming yet. It started to spread, but I think I was in denial that something was seriously wrong until I tried to run and it was spastic and difficult. I made an appointment with a PCP who then me an appointment with a neurologist. I was diagnosed pretty quickly with an EMG, but needed to admit myself to the ER for a spinal tap and a loading dose of IVIG.
My first treatment was horrible, I was sick with flu like symptoms for a week. My first treatment was in August and I didn't have another one until October. I was still declining, and unable to see one neurologist regularly that was familiar with my case. I stopped working right around Halloween, my balance was really bad and I started using a walker and wheelchair. Eventually I pulled some strings to rectify this situation, but it's sad I had to. My neurologist confirmed that I was getting worse and apologized and gave me his phone number if I ever needed him for questions. He thought IVIG wasn't working on me so we started once a week IV steroids. This only gave me temporary relief, so I then started daily Prednisone. The oral steroids were beginning to work, but my family wanted to get a second opinion. So we went to
UT in Texas a center of excellence for CIDP, and they agreed with my diagnoses, but wanted me to start IVIG every week and remain on 60mg of Prednisone.
Ever since then I have been improving very slowly. I don't know what triggered this disease, but it's crazy how fast it disabled me and long it is taking for my body to heal itself. But I will beat it!!!
I'm still on a walker and wheelchair for long distances, but I see improvement every time I go to physical therapy. We've spread out my treatments from weekly to every four weeks and 60 mg of Prednisone to 7 mg. I loathe this disease and I can't believe it's been almost two years of me dealing with it, it had been really hard. I luckily have a great family and boyfriend who stuck with me through this.
I have CIDP it doesn't have me! I will win!! Never give up!
