Does anyone else have GBS that was a surprise with no beginning?
October 8, 2018 at 5:37 pm
I was recently diagnosed with GBS after my EMG revealed severe damage in both legs, feet, hands and arms. Symmetric demyelinating sensorimotor polyneuropathy. I’ve had multiple viruses throughout my 60 years and we are not sure what triggered GBS. Approximately 30 years ago I had an incident where I was completely numb from the waist down and had to lay down because I felt I couldn’t stand. Another time I took a year to recover from pneumonia and never really felt right again. I have had an extremely stressful life and just figured it was all stress. I am riddled with horrible pain daily, low stamina and upon exertion my pain later escalates. My memory is bad and sometimes I feel like I am dying. I read that most people with a diagnosis of GBS had a horrific experience that put them in the hospital for an extended period and then rehab. I’m looking for someone else who might share an experience similar to mine where things in the past aren’t so clear and yet here I am with the life of a person with GBS residual. Are you out there?
October 8, 2018 at 11:25 pm
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:
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:
October 9, 2018 at 9:10 am
Thank you so very much for all this helpful information. It gives me direction. I’m going to go to Wayne State University where they have someone who specializes in this area. It was reading your story and your responses to others that encouraged me to join the forum. And here you are responding to my story. Bless you and thanks again for your help. I did have a lot of blood work but no spinal tap.
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