I'm 55 and developed peripheral neuropathy back in 2003 when I contracted West Nile Virus. At the time I had meningitis and encephalitis and probably Guillain Barre (fortunately I didn't have to be on a respirator). But my doctors were really clueless and didn't try to get a confirmed diagnosis on any of the nerve damage.

Like many of you I've had severe pain, mostly in my legs, paresthesias that were absolutely tormenting - like being buried in an ant hill - and various degrees of numbness, tingling, etc. It finally got to the point that the gastroparesis was so severe I was losing a lot of weight and couldn't sleep at night.

I finally got a physiatrist to do an EMG and he discovered axonal damage in the thoracic spine area but normal nerve conduction in hands. It was not an extensive EMG like I've had in the past, just kind of cursory to get an idea what's going on. I've seen four neurologists and all were dismissive, probably because I wasn't asking for medications, just diagnosis. But I will try another one to see if we can finally get to the bottom of the neuropathy.

I just had an antibody screen and the only thing that came up positive was IgG anit-GM1. I don't have any motor neuropathy other than the gastroparesis, just sensory. If I try to do any exercise, even walking a few blocks, my spine goes numb, pain starts radiating across my torso and it seems like every nerve ending in my body from my scalp to my toes feels like it's being shocked. No one will explain this so I'm requesting a skin biopsy to look for small fiber neuropathy.

It's interesting that many of you seem to react to showers...I've tried to tell doctors what torture that is and they just say I'm probably reacting to something in the soap or water. For years I tried various soaps, detergents, even shower filters to try to deal with it because the itching and burning would last for at least two days...if I get hot the same thing happens but it stops as soon as I cool off. Clothes can feel like they have shards of glass in them - sometimes I change four or five times before I'm reasonably comfortable.

So I'm curious if any of you have the anti-GM1 antibodies and if so, what condition were you diagnosed with? We thought CIDP was a possibility, but I don't have much motor neuropathy. I have no other autoimmune markers.

And for those of you with exercise intolerance, do you know if it is harmful to exercise when you get those symptoms? It seems like it would increase demyelination and cause the immune system to further attack the nerves. But I don't want to be totally static - I used to be a personal trainer and rehab therapist and it's hard to avoid exercise!

Thanks for any insights and suggestions -

Jan