sensory variant of GBS

    • Anonymous
      November 25, 2013 at 2:07 pm

      Does anyone out there have a sensory variant of GBS (or recovered from this variant)? It is one of the more rare variants, and I’m hoping someone might be willing to share their experience. I’m 9 months in, doing OK, but still struggling. My legs feel wobbly and disconnected even though my sensory nerves (not motor) were primary affected. Has anyone else experienced this wobbly, disconnected feeling, even when your legs are fairly strong? I feel so unsteady on my feet sometimes. However, thankfully, the worst of the terrible neuropathic pains seems to have passed.

      I’m looking for reasons to be hopeful right now. I’m trying to stay positive, but quite honestly get overwhelmed with sadness sometimes.

      If anyone would be willing to share their experience I would be incredibly appreciative.

      Jessica

    • Jim-LA
      November 25, 2013 at 9:38 pm

      Did you read the 2012 GBS-CIDP Foundation article “Immune-Mediated Small Fiber Neuropathy: A Treatable Condition That Can Mimic GBS or CIDP” by Dr’s Saperstein and Levine? You can read it here (scroll down to page 7): http://www.gbs-cidp.org/wp-content/uploads/2012/07/Summer-2012-Medical-Newsletter.pdf

      There are also many forum discussions about it. Go to the main forum page and perform a search, then read through the member threads of interest to you. Here are a couple threads:
      http://www.gbs-cidp.org/topic/small-fiber-neuropathy
      http://www.gbs-cidp.org/topic/small-fiber-peripheral-neuropathy

      Hope this info helps.

    • Eric
      November 27, 2013 at 6:49 pm

      Jessica,

      If you’re like me it will slowly get better. I’m a bit over 13 months and I still have to balance myself whenever I get up. However, it’s much better than it was last month and the month before… Just keep on grinding forward.

      Eric

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