Reply To: Newly diagnosed- Ivig expectations?

December 19, 2018 at 6:08 pm

Sandy – I was diagnosed with GBS 14 months ago after getting my first ever flu shot. I had 5 days of IVIG which stopped the progression of the nerve damage. Everyone recovers at a different rate but for me, I am still recovering. After 14 months I still have numb/tingly feet, legs and fingers. It’s VERY frustrating! Fatigue is what the biggest frustration is – you have no control over it and can just work out and make it better. It’s about learning to live a different way (allocating your energy). I too was very active until GBS… and now it’s a struggle to do yard work. Dr’s may have told you that you will “fully” recover in 6months to a year, and I hope that is true for you – but if it’s not…. hang in there, take it day by day, have a good support system, don’t push yourself to hard or you will take several steps back in recovery (I learned the hard way…several times in-fact). GBS is so rare that you may have a hard time finding a DR or Neuro Dr that really understands what you are going through so be diligent with them if they try to poo poo how you are feeling or experiencing. Best Wishes… reach out if you have questions.