The CIDP/GBS Life

Test. Test. Test. When   my husband first started having trouble with his feet, no one seemed to know what to do.  Our primary care doctor had blood drawn.  The E.R. had a CT done. The neurologist had MRIs done.  The spine doctor had more MRIs done.   They all said they couldn't find anything. Meanwhile, my husband went from a healthy, able-bodied man to someone who could barely stand up with a 4-wheel walker for support. The day he just "melted" to the ground twice, we went to the neurologist and then the E.R. for the third time in three months.   Finally! Diagnosing GBS! This time, the doctor in the E.R. decided that my husband could NOT just go home like that and that he'd do his best to figure it out.  After a few more tests and time spent on Google as well as brainstorming with the neurologist, Guillain Barre Syndrome came up. The doctor did a lumbar puncture and found that the proteins were off the charts.  They told us that was in...

  Do you know what GBS or CIDP are?  We didn't know either, until a couple of years ago. GBS, short for Guillain-Barre Syndrome, is a rare nerve disorder in which your body's immune system mistakenly attacks the peripheral nervous system, causing weakness, tingling, and paralysis to the extremities. CIDP, short for Chronic Inflammatory Demyelinating Polyradiculoneuropathy, is an autoimmune disease in which the body's immune system attackers the myelin sheath that surrounds nerves and assists in the transmission of signals.  CIDP is considered the chronic version of GBS.  GBS is 2-3 in 100,000 people.  CIDP is said to occur in 1.9 to 7.7 per 100,000 people. Either one is pretty rare, but my husband had GBS and then CIDP.  So I guess we hit the jackpot!   This has been quite the learning curve.  The doctors in our area took a while to recognize it because it's so rare.  But we're learning as we go.  That's what this blog is for; to sh...