Tara

[I have experienced lots of nerve pain that has manifested in different ways. two days before the original so called “gbs” I had what I cal frost bite like pain. it felt like the deep ache you get when you get too cold and you thaw out, all over my body.
I get cramping that feels like i need to eat bananas for potassium.
I have had cramping pain behind my eyes
I get this diffuse rotten pain that feels like a body migrain
I have had flank pain that feels like I have a kidney stone and then radiates up to my neck
I have had a boaring pain in my neck that ran up the back of my head and down my shoulders
I have had pain that feels like a knife in my trapezius
I have had the kind of pain that shoots down my arms and feels like somthing is pulled too short.
recently I have been getting joint pain but I doubt that is neuropathic
I have only been diagnosed with gbs not cidp yet but I have heard many diagnosed people talk about pain on this site so it is part of this disease.
Oh and there is some boaring pain that makes me weaker too]

Tara I think you are living in my body!!:(

I am also still not diagnosed. I just returned from seeing a reknown doc at the University of Miami. My neuro has his report per his nurse and will call me later today. I know he is going to recommend oral steroids and another EMG because he told me that much. He thinks I have more than one problem. Spinal cord damage, transverse mylenitis; and some kind of autoimmune disorder. Aren’t I lucky:rolleyes:
He does not think I have CIDP. I hope to know more later today.
Sue