I was 45 years old when I was first diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP).
It was abrupt. One day in Early January 1999 my feet were "pins and needles" numb. From that moment on it all spiraled downhill. Before Spring was over I had endured a brain MRI,numerous blood tests, an EMG, muscle and nerve biopsies, lumbar puncture, and several infusions of Gamma Globulin.
Although, the MRI showed several lesions in the "white matter" of my brain, they weren't in the area for classic multiple sclerosis, so my neurologist continued testing. The EMG showed the demyelination. The lumbar puncture showed the protein indicative of CIDP. The muscle and nerve biopsies were the defining moment. It was after all of this that I started my series of infusions. During my first infusion I started reacting to the immunoglobulin. Spiked a fever, chills, rash...My subsequent visits to the UW-Hospital required that I be pre-medicated before starting the 4-5 hour procedures. I also developed aseptic meningitis. "This too shall pass"
The infusions appeared to have healed my brain lesions, however, the numbness in my feet, legs, and hands remain. The pain and fatigue I experience is relentless.
I have a wonderful doctor that I see at the UW-Hospital on a regular basis. He's conservative in his treatment which suits me just fine. I take Neurontin for pain. Because of an end-stage liver disease, I'm limited as to medications that I'm able to take.
I recently had to discontinue working, so that adjustment is almost as difficult as the illness itself!
Even though pain and fatigue are my major complaints at this time, I still remain hopeful.
If you should decide to e-mail me, please take the SPAMNO out of my address. Thanks.
