Post GBS symptoms return…CIDP?

    • February 18, 2018 at 10:19 pm

      Quick history: I had GBS, beginning 4/28/17, hospital and IVIG began 5/10. My breathing was never compromised so I didn’t have a severe case. I did have a non-linear recovery, with facial paralysis returning after it had been gone for two weeks. That did resolve, and by last September to October my last symptom (slight numbness in hands/feet) had finally gone away….not that I was (or am) back to running up to 14 miles like before (although I have made it up to 8—woot!).

      Issue: I had mild case of the flu in mid January simultaneous to some numbness returning to my feet. Not bad, and it has decreased. Then yesterday, I started having some “sleepiness” in my right hand.

      Does anyone track with this? I had a theory…my son has a neurological condition called Horner’s Syndrome,and his oncologist always told me that illnesses exacerbate neurological conditions. Could all my myelin sheath not all be healed, just healed enough to be asymptomatic,and the flu weakened the system such that I have symptoms return? Or is onset of CIDP more likely?

      Anyone experienced a pattern like this? I am seeing a neurologist for the first time since the docs I saw in the hospital (very frustrating! Could not get appt earlier!)but wanted to see if I could find any experience. From being a cancer mom, I have learned sometimes one can learn much valuable info from other patients.

    • February 19, 2018 at 8:41 am

      Hi! Your son’s oncologist is so right (and it is good to hear this from an extra source). Things could be going great and I almost forget I have GBS, and then the weather changes drastically. Something starts to go numb so I go thru my mental flow chart to get to the aha! moment. I was told to try to avoid stress, “overdoing it” in exercise, etc… which can affect sensations. Some of us ladies even get “the dropsies” during our “special times”.