Reply To: Residuals Question

One thing that seems typical about GBS is that none of us seem to have the exact same symptoms and residuals. Nor do we all heal at the same rate or respond to treatments in the same way.

Because of the wide variety of GBS disorders and our individual body’s ability to fight off these various forms of GBS, each of us ends up with different levels of left over symptoms.

You are quite fortunate to have the ‘residuals’ you have stated. Some of us have considerably worse symptoms and have been dealing with them for much longer periods of time.

I’m not too sure that all GBS nerve damage can be completely reversed, maybe for a few. Maybe I’m overly pessimistic, but it’s more likely that we won’t fully regain ALL the abilities we had before GBS. I have experienced a great deal of improvement since 2008, but still have tingling and numbness from head to toe.

Many sufferers still have pain many months and years post-GBS. I’m fortunate to not have had much pain at all; others can have bouts of bad pain.

The flare ups you mention could be the result of your nerves reconnecting as the Myelin are being rebuilt. It could also mean that you may have a more chronic version of GBS or one of its variants.

Symptoms of GBS often start with tingling or numbness in the extremities of the body. The hands, feet, and face are often affected first.

People with GBS suffer from a wide range of symptoms that may include:
– weakness in leg, arm, and facial muscles
– tingling, numbness, creepy/crawly feelings
– problems with speech and swallowing
– pain in the muscles of the back
– shortness of breath
– decreased ability to move the eyes

Symptoms typically progress over a period of a few days and are usually at their worst 2 weeks after onset. Then they slowly decrease over time. According to the NIH, about 30 percent of those with Guillain-Barré still have a residual weakness after 3 years. About 3 percent may suffer a relapse of muscle weakness and tingling sensations many years after the initial attack. Ref: http://www.ninds.nih.gov/disorders/gbs/detail_gbs.htm

You didn’t mention what treatments you were given for your GBS. Did you have IVIG? Plasmapheresis? Take medicines like Prednisone? Did they test for elevated protein levels in your spinal fluid? How all this was dealt with might provide some insight into whether you have something other than GBS.