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Anonymous
August 9, 2011 at 10:16 pm

Hi All,
This is my first post. I was diagnosed with GBS in February 2011. Fortunately I was diagnosed quickly while in the ER. They started IVIG within 16 hours of initial hospital visit. My symptoms started with my hands going numb and felt heavy. By the next morning I could not tell where I was placing my feet and had lost most of my balance. By that evening I found out I could not swallow and choked on dinner. My breathing never faltered and I was able to avoid the ventilator.
I was able to tolerate the IVIG with massive quantities of Benadryl. Within 24 hours of receiving my first bag of IVIG I could feel the effects of the GBS was slowing. After the second IVIG treatment I was transfered to a rehab center. At this time I was unable to walk and had little control of my arms. I was on a liquid / pureed diet that consisted of the worst food I have ever tasted (not sure it was the food or my taste was all wacked). Within in 3 days I was getting worse and returned to the hospital for the third and fourth round of treatment. After the third and fourth treatment of IVIG I really felt things were on the mends. I was transferred to a convalescence center for minor rehab and strength building for 7 days. Once my strength was up I was transferred to a rehab center. Within 5 days of rehab I was able to return home with forearm crutches and a walker. I spent the next two weeks in outpatient rehab with great success.
I was officially released back to work in April part time (Neurologist thought I was nuts). My work was very accommodating and helpful with this transition. I started working two half days a week and slowly increased to five half days per week in a month. After increasing to five half days I started to increase more hours as tolerated. Over the last two months I have been able to return full time. I still have bad days and have learned that if you wake up feeling like it’s not going to be a good day than stay home and rest. By the end of the week I am tired and need at least one day to recover. I still have tingling in all of my limbs, but much less. My face goes numb along with my tongue. My endurance is very low. Overall I feel very fortunate and thankful that my case was minor compared to others.
The best advice I can give you is make sure to surround yourself with good friends, great family and learn as much as you can about this horrible disease. When you are tired, REST! DO NOT OVER DO IT! Stay Positive!

Daren