That is a toughy question!

May 5, 2009 at 8:09 am

I know when I first developed neuropathy all I was getting was a bunch of numbness and tingling. The first NCV they did on me back in the late 80’s only showed sensory neuropathy. Then I kept complainiing because I was having trouble walking and felt so darn weak. They did another NCV and found Motor and Sensory with Axonal Degeneration. I think Asemetric too! Then they called it Chronic Demylinatining Axonal Motor Sensory Neuropathy. I never back then suffered pain. Just had that numbness and tingling and weakness that drove me insane. I kept feeling like I was having strokes too. Mini strokes. And later on in an MRI I did show a Cerebral Infarct. And later did go into CNS Lupus that almost killed me.
I did not start getting nasty pain until last year after I had spine surgery and I don’t know what the heck happened to me then. But my body went on fire. My feet and hands burned something aweful! That is when I went into full blown CIDP and got diagnosed in October.
GBS patients get instant pain when they first get GBS and some keep pain even after healing or some never heal completely. Some keep pain and it never goes away while others see the pain finally ease up. CIDP on the other hand when there is alot of pain it normally means the condition could be progressing causing more nerve damage.
I know in my case when I start getting that burning pain and numbness and tingling, I know my body is getting demylination again. More nerve dying off!
Hope this helped some! Ohh! the doctors too have a scale they go by. They call it Mild or Chronic or Severe! Sometimes they call it Severe Chronic. Mild usually they do a wait and see issue! Chronic at times they still have to wait and see while they are trying to diagnose the cause!
Linda H