chronic GBS/now CIDP

February 3, 2009 at 11:21 am

Hi Suzanne, Just a short note and maybe some discouraging info. My doctor told me recently after I was experiencing severe neck pain, shoulder pain and it traveling up my neck to the top of my head (the meneges nerve) that unfortunately the older we get the worse the symptoms become and the longer they last. Mine lasted for three months this time. I found out that I had a urinary infection and the doctor gave me Levaquin for 7 days. After 2 days my pain went away. When the nurse came in with the results of my urine test, my doctor and I both said at the same time, “that’s the problem”. I am glad that he is very informed about the side effects of GBS and know that any infection in your body can result in some of the original complaints I had when I first became diagnosed with GBS. One was a bladder infection I didn’t know I had as this time I didn’t know I had one, but once it started to stop my neck pains and other symptoms I had for 3 months went away. MY original onset of GBS started with the pains in my neck shoulder and head and now everytime I get an infection that’s where the pain starts. Listen to your body and realize that the symptoms we have from GBS now called CIDP are real. Why are we so surprised all the time? I was diagnosed with GBS in January 2000 and my residuals get worse and worse, although sometimes I have good days, but over doing it or getting stressed will surely quicken the residuals which come in many forms. By the way to anyone else out there reading this reply, do you experience weak bladder and especially frequent urination and as much diffuculty sleeping as I do. Thanks – Bunny