Jessie Radford Graham
GBS Survivor Blog

About Us

Here is my timeline:
Saturday 9.1.2012 feet fell asleep not to wake up
Monday 9.3.2012 dropped cold drink for feeling frost bite 
Thursday 9.6.2012 feeling tired and weak
Tuesday 9.11.2012 exhaustion and weakness overtook with random muscle flexion-went to the dr (PCP)- labs and physical exam
Thursday 9.13.2012 can't tolerate any posture, friend and sister drove me to work and school- drug seeking
Friday 9.14.2012 brain MRI to rule out MS- friend drove me, STAT results and dr says brain normal- that I am exaggerating and he can't (won't) help me. Husband drove me to get abnormal lab results-indicates ASO titer is high- called rheumatologist got appt for Monday
Saturday 9.15.2012 niece bday party- can't get off the floor without assistance from husband and sister. lack of feeling in legs and bottom, bed ridden
Sunday 9.16.2012 sleeping with narcotics and melatonin, help with toilet and shower, eye keeps watering (hmmm)
Monday 9.17.2012 recognized Bells Palsy, walking 5 steps at a time w/ breaks- refusal to use wheelchair. Sister tool me to Rheumatologist- says can't treat me but WILL HELP- ordered labs, c-spine MRI, EMG/NCV, and 4 week out appt w/ Neuro. called triage nurse in neuro- got on cxl list and moved to 2 week wait.
Tuesday 9.18.2012 EMG/NCS tech unable to get good read due to random muscle flexion and intense pain responses. Neuro Dr comes in to help, sister points out Bells Palsy- Dr responds ASAP- sent to lab for 7 vials and back in for immediate assessment. Neuro exam reflexes gone and responses super slow, strength nill, timeline events no known prior illness, 1 hour visit with suspicion of Guillain-Barre Syndrome...not funny. cancelled c-spine and set spinal tap instead for confirmation- scheduled IVIG immunoglobulin infusion. 

Advice to call 9-1-1 if respiration ceases. Called husband. Called mom. Withdraw from school, PTO for work, call in asst coach to cover softball. Life stopped. Husband takes over.
Wednesday 9.19.2012 husband takes me to spinal tap- fluro guided so easy peasy- knew my PACU nurse- what a relief. Labs show negative for all tests. Mom flies in.
Thursday 9.20.2012 1st day 75grams IVIG w/ husband and mom. no change in symptoms.
Friday 9.21.2012 2nd day 75 grams IVIG w/ husband and mom. nap- upon waking I laughed...mom says "smile again" Bells Palsy resolved. relief to know treatment will work. Dad flew in.
Saturday 9.22.2012 sick- very sick- expected reaction to immunoglobulin. aunt and uncle came to help.
Sunday 9.23.2012 still very sick, weak, and tired. mom, dad, aunt and uncle left- very sad.
Monday 9.24.2012 feeling slightly better- not sick. Only improvement is absence of Bells Palsy
2 weeks started working from home 1-2 hours a a time.
2 months driving to work- napping in cubicle every 3 hours- falling 
and small injuries.
6 months later reflexes came back and dr says "out of the woods"
4 years later- still trying to manage life but I am working and going to school. Have had 2 exacerbations, depression, random illnesses, lots of pain, weakness, and fatigue on daily basis. Fear of aging and the future. Joined support groups, learned can have relapse. Working on self-care, and bearing with lack of meeting expectations. Incredible support from family and friends. Loss and longing for function and performance. Life is short but time is slow.

GBS: Getting Better Slowly