Reply To: Axonal Guillan Barre (AMAN)

Helga – I have as many questions as you! I had gradual onset as well but then sudden onset within weeks 0f receiving a flu and pneumonia shot. Axonal “dying back” was confirmed by EMG; my diagnosis is idiopathic, progressive sensorimotor neuromuscular polyneuropathy. My doctor suspects it is a GBS variant but spinal fluid and nerve biopsy were inconclusive.
In an effort to slow the progression I had one round of IVIG and saw mild improvement, but muscle atrophy in lower legs, core and ankles is progressing.
Now we are trying a 4-week pulsing course of Prednisone (80-60-40-20). Sensory symptoms are “on fire” … much increased nerve pain and numbness. I can deal with that if the anti-inflammatory effects of prednisone work.

Has anyone had success with Prednisone (or failure?). Ok now to get the straight story!

Thank you!

Renee

PS: And, Jim from LA … special note to you in thanks for your very valuable contributions to GBS-cidp members.