Reply To: GBS As a Child, Serious Effects Now?

March 21, 2017 at 9:20 pm

CIDP is the chronic form of GBS. Sometimes it stays dormant or in remission for many years. Once after having GBS, our immune systems know how to produce antibodies that can attack “self”. Usually something triggers the immune system to produce more of those antibodies. Maybe a traumatic event, the flu, shingles, or some other illness.

An EMG is one of the ways of diagnosing CIDP. But an EMG may not distinguish the disease in its early stages, there needs to be sufficient nerve damage before the EMG can detect it. You may wish to read and share the following publication with your doctor, it lists other diagnostic criteria for identifying the disease:

If CIDP is confirmed, you will need to start treatments quickly to reduce the risk of further damage. A few weeks makes a big difference. Because of not getting proper treatment when I first got the disease, I’ve been relegated to living a wheelchair life. I don’t want that for anyone else.

If your doctor needs to do more testing, or you find yourself waiting for your insurance to approve expensive treatments (IVIg, Plasma Exchange, etc.), see if your doctor will at least start you on a corticosteroid like Prednisone. This class of drugs can help suppress the immune system until a stronger, more appropriate treatment can be approved.