Patient Stories GBS/CIDP

    • racer13
      October 15, 2016 at 12:37 pm

      It’s Only Rare….Until It’s You.
      Available on this web site!
      This is a must read of patient stories who have GBS/CIDP. A paperback book that details patients
      journies and what each person has gone through along the way to recovery. This book should be given
      to loved ones, family and friends for a better understanding of GBS/CIDP. Again, a must read.
      The proceeds benefit the foundation. Lets make this a best seller folks. You won’t be disappointed.

    • Determined
      November 6, 2016 at 4:20 pm

      Hello everyone i am new to this site but wanted to share my story. Sept 30, 2016 started off without any problems, shopping at the mall with my mom and daughter. Oct 1, 2016 woke up at 6am getting ready for work noticed left leg felt different, like it was asleep, pins and needles but right leg was fine, then noticed a warm sensation moving up left leg. Drove to work thinking leg would recover but it got worse. I decided i needed to go to the emergency room. As i walked down corridor my legs buckled, in the emergency room i was unable to move my legs. I was admitted Oct 1, 2016 and discharged for the rehabilitation unit Nov 1, 2016. The numbness and tingling affected me from the waist down only, it also affected my bladder and bowel function. While hospitalized, i lived as if i was at home, i had my family bring my shower gels, sprays and jewelry. I wore my own clothes and i listened to music to keep me motivated. When I first started rehab i required 4 staff to ambulate, they also provided stair training and car transfer. I initially used a slide board for transfer. My most memorable time was the day my goal for ambulation was 75 feet. All of the staff were in the hallway cheering me on, two nurses stood at the 75 foot mark with toilet tissue stretched across the finish line. As i crossed the finish line i was overcome with joy as they stood there cheering for me. The next day my goal was 100 feet. As I reached my 100 feet goal i refused to stop and was able to ambulate 127 feet and nobody was holding my feet for placement either time. My team of doctors included medical, physical medicine and rehabilitation, and neurology. I received IVIG during my stay. Once discharged i was determined to walk and not be carried into my home. I was able to use the stairs leading into my laundry room and i cried as i reached that 3rd and final step. I am determined to walk again and spend less time as possible in my wheelchair, i use my walker as often as i can. I’m not as tired as i used to be and my symptoms are improving. This has been a eye opener for me and made me realize what i had taken for granted. I never thought i would have to use a walker or a wheelchair but as i look back to Oct 1, 2016 and today, I know I’ve come a long way. I stay positive, no pity party for this girl, i am Determined.