I wonder if there is any connection between the twitching and restless leg syndrome? I have that, have the symptoms you describe (also a GBS patient) and take ropinirole (1 mg daily) for the twitching. It helps quite a bit and my wife is grateful that I no longer kick her all night 🙂 I had the problem with RLS before I was diagnosed with GBS last September and have always wondered if there is not some connection between the two nerve ailments.

Regarding the RLS, check to see if there is anemia involved – Low iron levels in the blood can lead to twitching as well and can exacerbate RLS symptoms.

Hi Brad and Janice
I got RLS about the time I got CIDP diagnosed. I would relax in bed and as I about dropped off I would get a sudden awakening and I had to keep moving without stopping or go crazy. This affected not only my legs, but my hips and spine.

I got along with less and less sleep–average a couple of hours/24 hours. I got some symptomatic help from doctors: pain, RLS, insomnia, etc. The fix for the RLS came as a “side effect” of my other medications. [what a relief.]

I was on neurontin for several years. Then changed to Cymbalta, which I liked better. Now I’m changing back to the neurontin [insurance formulary]. My problem with that is sudden jerking here and there in my body, mostly arms and hands.

On time I was about to pour water in the dining room and my fingers jerked open. All the water and ice flooded the table. The nice waitress cleaned it up and directed us to a dry table.
😮
Take care,
Patricia

Brad, my twitching is my eyes. When I eat or converse my most active body part is my eyes. Blinking, winking, other facial things. Lucky for me, I reprogram my brain before I look in the mirror. So I like what I see. Sometimes I wonder if it is Tourettes Syndrom.

My father’s neuropathy started when he felt like he had stockings on but did not. Then the lower legs lost their muscles and he had 2 peg legs. Then it went up his thighs, lost his upper leg muscles. Then his hands, arms followed and he was a virtual quadroplegic.

He had asked his doc for a diagnosis. He was told that he should quit compliaining and grow old gracefully like others did. I bet most of us have been treated that way, but father’s non-dx was particulaly cold and rude. Dad was too stung to try again.

And, now the rest of us have no family history to help us with a Dx. My little sister has post polio syndrome, another sister has FMS with various simptoms not considered. We all sort of have similar symptoms and sometimes I wonder if the dx is selected by whatever his specialist is.