Katy, thanks for the prayers. Sorry it took me so long to respond.
I had Plasma Pheresis procedures on back to back Fridays 2/19 & 2/26. That made 2 PEs in 6 weeks (tied a record for me). They both went well.
I saw my neurologist on Friday 3/5/2010. The appointment went very well. The neurologist was very pleased with my reflex responses, strength, motor function and sensory responses. The tops of my feet by my big toes and the bottoms of my feet still have areas of numbness where the feeling has yet to return. He said that based on my prognosis when he first saw me, he would never have expected such a drastic recovery and even talked about remission. He wants me to work towards 2 PEs in 7 weeks and to continue to try and stretch them out.
I told him I was training to run/walk in the 5K Miracle Mile. He was very encouraging and suggested contacting my local newspaper to publicize it. He offered to talk with the newspaper as well. He asked me to be a “guinea pig” for his clinic at the Baylor College of Medicine to see if they could diagnose CIDP with me telling them that I may have CMT. I agreed. Anything I can do to help educate aspiring neurologists is well worth my time.
We discussed my adverse reaction to cellcept. He suggested trying to see how far I can get extending PEs without immunosuppresants for the time being. I DEFINITELY AGREED!
Last week was not a good week. I had low grade headache, burning, tingling in my extremities (especially my fingers), and my right leg was acting up again. I restricted my workout routine to weights and the ellyptical machine and walking on the treadmill.
This week is starting out much better. No headache, no burning, no tingling and my leg is working well. I’m going to try and run on the treadmill tonight (preparing for the Miracle Mile 5K).
Yesterday some dear friends in my Sunday School class whose young grandaughter in nursing school just went through a battle with GBS told me that their grandaughter is running 3 miles daily preparing for a marathon. The last I had heard she had terrible headaches and was struggling with her studies and physical recover. I guess she has recovered quite a bit recently to be preping for a marathon! I was elated and encouraged them to have her write down her story so she can share it with others.
I wish you all well. If you need the name of a fantastic neuro in the Houston area let me know …