Reply To: Does anyone else have GBS that was a surprise with no beginning?
GBS usually doesn’t last longer than a couple months. It seems you have had a form of peripheral neuropathy for too many years for it to be GBS, and RGBS is rare and seldom endures for more than a year. Many doctors consider symptoms after a year to be CIDP or one of its variants. CIDP is the chronic form of GBS and can come and go over many years, like the experience you describe. Symmetric demyelinating sensorimotor polyneuropathy is considered by some as a different phenotype, or variant of CIDP. More info about it can be reviewed here:
CIDP can usually be distinguished from GBS/RGBS through the following key tests:
• Diminished or absent deep tendon reflexes.
• A spinal tap, to analyze cerebrospinal fluid for elevated protein levels.
• A Nerve Conduction Velocity Study that measures how well individual nerves can send an electrical signal from the spinal cord to the muscles.
• Complete Blood and urine tests.
It seems you have had some of these tests. Spinal fluid elevated?
CIDP rarely remits without treatment and nerve damage usually worsens and becomes more permanent if not treated. More details about CIDP can be found here:
http://www.gbs-cidp.org/wp-content/uploads/2012/01/CIDP.pdf
CIDP and its variants can be difficult to diagnose exactly. Even assessing the results of an NCV is a bit of an art. Usually, all the tests must be made to confirm the presence of CIDP. Neurologists that have specialized in treating CIDP know this and the signs to look for. Other tests can be found in the following publication and may help you and your doctor better understand your affliction, its variants, and how to best treat you:
http://www.gbs-cidp.org/wp-content/uploads/2013/02/AcuteCareICU13.pdf