Story about Guillain-Barre Syndrome .

GBS onset to 64-year-old active athlete

Sep 11, 2017

By: Denny

Year Condition Began: 2016


Former 64-year-old healthy & active athlete, sickened probably by avoidable campylobacter exposure associated with raw chicken contact (grilling kabobs) May 2016. I experienced the traditional onset with leg weakness which progressively worsened. While numbness in feet began to ascend up into lower legs, low back pain worsened to severe, driving me to ER twice. History of lumbar surgeries (artificial disc @ L4-L5), I assumed it was low-spine related. Imaging studies by my spine surgeon were negative for obvious cause. By the time I was numb up to my knees, I was panicky, I thought I was having a circulatory failure of some kind, why couldn't I feel my legs? I'd barely noticed the concurrent onset of numbness in hands & forearms. Admitted for now-unmanageable low back pain, numbness ascended to mid-thighs, a staff neurologist noted that numbness in BOTH lower & upper extremities could not likely be low-spine related, theorized GBS possibility, lumbar fluid showed high protein, confirming GBS diagnosis. 5-day IVIG followed. I relearned to walk inpatient during OT/PT. Released after 32 days with walker & cane, followed by 4 months of outpatient PT to try to maintain muscle mass & improve strength / balance. My most difficult ongoing challenges have been coping with painful feet & radical departure from my previous active lifestyle. My normally numb feet transition in minutes from numb -> uncomfortable -> severely painful; on my feet long enough, the pain is debilitating, requiring an opioid & time / rest to calm my feet. Of the assortment of meds prescribed for so-called "nerve pain" or neuropathy, nothing helped (Gabapentin caused foot / ankle swelling at any dosage), so I quit all meds except the occasional opioid for pain management. Over time, my ability to be on my feet has slowly improved as I have pushed myself on longer walks, but long walks or extended periods on my feet are really exercises in pain endurance. I've experienced the traditional upper extremities improvement, my hands & forearms are nearly normal sensitivity. Slower recovery in the lower extremities, numbness has receded from mid-thighs downward to my knees, maybe a little below, but calves & feet remain numb. My neurologist thinks I may have CIDP as evidenced by my slow recovery, that I should watch carefully for any setback or relapse, as in any increase in numbness or fatigue, that would require a fresh IVIG series to hopefully arrest any new flare-up. My most recent NCTs (nerve conduction tests) last week @ post-15-month-onset showed improvement, & for the 1st time so far I'm finally showing reflexes have returned to my knees. I've known I'd been healing based on hands & arms improving, but previous NCT results were disappointing. Fresh results + reflexes means I AM DEFINITELY (slowly) HEALING !

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