Reply To: Diagnosis pending

August 28, 2022 at 4:10 pm

Hi Audrey,

Hopefully, my similar story will provide you with some ideas on how to proceed. I, too, got the tingling sensation in all four of my limbs. After weakness set in, I went to the ER and was diagnosed with GBS (later changed to CIDP). A massive dose of IVIG in the hospital started me on the road to recovery. In fact, I was fine for nearly two years when all of the sensations came roaring back, and even another massive dose of IVIG didn’t help. It was at that time that my neurologist suggested adding oral prednisone to my treatment. Between the IVIG and prednisone (which has now tapered down from 60mg/day to only 2.5mg/day), I have managed to stay in remission…yay!

If the IVIG/prednisone combo didn’t do the trick, plasmapheresis and/or more powerful drugs was the next treatment in line.

I hope this helps. Good luck!