Hi, (Liftyourhands7) Jan....
I'll jump right in with a big I'M SORRY you're suffering and going through this awful experience... and I know, because I am too. Hopefully, we can support each other and offer advice on treatment and recovery If you care to read my original post under heb1212, you can see that my experience is much like yours. Never heard of this happening to ANYONE, and as you have said in previous posts, no one can truly understand the level of the pain and fear that seems to spread as quick as the neuropathy. I too have SFN absolutely body-wide... head to toe. Started with tingling, burning feet in October and now includes my scalp, face, mouth, eyes, nose, throat and everywhere in between. I've had every test imaginable, and the only thing the many doctors can conclude is a post-viral event triggering the neuropathy after something called parvo virus b19 last summer, which I suppose is better than the idea of something entirely "idiopathic." Bless your heart as you sift through this. Did I read correctly that you've had IVIG therapy? If so, I am wondering how you are doing since. It hasn't even been suggested to me... only symptomatic treatment with Gabapentin. I am very leery of the suggestion of the other antidepressant meds. Don't want to become drug dependent and in a stupor all the time. The gabapentin is bad enough.
In God's Grip
Cathy