I finally saw my written summary of my LLE EMG. It states I have mild sensorimotor peripheral neuropathy (long fiber.) My sural nerve is slowly getting worse (sensory.) As far as motor, my anterior tibial and peroneal nerves tested normal, so the motor affected is by my toes. My team of docs is saying this must be due to an autoimmune occurence. How is that possible when my bloodwork is completely normal? So normal that my docs agreed I could come off Plaquenil. I had been taking it for about 10 years for suspected (no positive antibodies) for either Sjogren's or Lupus. I had read in rare cases it could actually cause nerve damage. The last time any of my bloodwork showed anything was in 2005, when I had a slightly elevatex ANA, c-reactive protein, & +antiphospholid antibodies.

I am supplementing with B12 infections-last level was 662. Aspirin, vit D, mag lotion, fish oil. I have an appt with my regular neurologist next week. Am I missing something? I feel like I need to keep searching for a cause. This is incredibly frustrating.

Not all autoimmune factors have been discovered yet, and the tests we do have are not 100% reliable. There are people with lupus who have normal ANA levels.

However, Plaquenil is implicated in causing neuropathy side effects. It is a quinolone and related to the fluoroquinolone antibiotic family.

Here is a compilation of side effects from FDA reports.
http://www.drugcite.com/?q=Plaquenil
Click on "neurological" and that category will open up to reveal the PN symptoms.

Stopping Plaquenil may help, but it may take time. This problem has not really been investigated yet, so healing from any damage is not proven or understood well.