- CASE FILE
Chronic Inflammatory Demyelinating Polyradicalneuropathy muscle weakness, tingling and "electrical zaps" constantly throughout my body
ABOUT THIS CASE FILE
I woke up March 1, 2015 unable to lift my arms to shower or brush my hair. I went to work the next morning and was unable to hold a pen. Went to ER, told it was a stroke, underwent testing, admitted overnight and released with "unknown weakness in arms". Woke the next morning at home and fell down the steps because my legs stopped working. Went to another ER and admitted. Several tests, spinal tap, MRI, CT scan and diagnosed with Guillian Barre Syndrome. I then had 7 round of Plasmapheresis and was able to walk out of hospital only to be readmitted 12 days later with same issue. After 15 hospitalizations at 3 hospitals, 2 spinal taps, many rounds of IVIG which blew all of my veins in my arms, diagnosed with the ugly sister of Guillian Barre, Chronic Inflammatory Demyelinating Polyradicalneuropathy or CIDP. I then had a port inserted into my chest after doctors were unable to get a PICC line to stay in my arm. I was at this point paralyzed from the neck down. My insurance sent me to "their" hospital (150 miles by ambulance) where their doctor confirmed diagnosis (after the second EMG or nerve conduction test which at that point was like torture to me). He then decided to withhold IVIG which was the only thing that helped me and try only physical therapy. After no progress I was then sent to a nursing home (to die?) and given 1 hour of PT and 1 hour of OT daily, no range of motion exercises and no compression/lymphedema pump for my legs although one of the biggest complications of being paralyzed is DVT's/PE's. After 5 days, I passed out one morning while being dressed and put into my wheelchair. Staff at the home said it was because I was "overheated". I did not feel well and called my neurologist (on a Sunday) who told me to get to the ER immediately. After going to ER and getting chest X-ray, had to have emergency procedure for the most severe pulmonary embolism doctor had ever seen. He did not think I would make it through the night. I was then in Cardiac ICU for four days, then regular room. Through the grace of God and my fabulous friends, I was sent home with hospital bed, Hoyer lift, and wheelchair. My husband and friends then provided me with 24 hour care. After 4 months of painful PT and OT and stretching on my own, I was able to walk with a walker for a bit, then a cane. I also had 4 days ever other week of IVIG infusions for fours hours each day. That also helped me with movement however taking 60 mg. daily of Prednisone helped the inflammation but caused 100+ lb weight gain. As of January of this year, I have weaned off the Prednisone, was hospitalized in 2018 for sepsis from a UTI, which I constantly have and no one is sure why other than my immune system is virtually non-existent due to the IVIG and immunosuppression drugs I take daily. I was able to return to work after 11 months although I could no longer do the job I loved. I am now trying to do IVIG every three weeks for four days as both my neurologist and I want me to have more of a life than infusions and work. My life is drastically different and now there is a worldwide shortage of IVIG so I am never positive that it will be available to me. I considered autologous stem cell treatment (AHSCT) which has proven successful for many people but the cost and risks as well as the time commitment have prevented me from that. They have never been able to find out how or why this has all happened and there is no cure for GBS/CIDP. I have had many relapses and have had my job, my marriage and my life in jeopardy because of this. My quality of life is now determined by the availability of medicine, my insurance, this rare disorder and the amount of damage it constantly causes to my nervous system. There has to be a better way. Each day I wake up hoping I can walk and talk never knowing when a flareup may occur.