I have had peripheral neuropathy symptoms for approximately 16 years. I gave up on neurology over a decade ago because all my test results always came back normal (EMGs, MRIs, spinal myelogram, etc.). Back then, they didn't do skin biopsies for small fiber neuropathy and I STILL haven't had one but I hope to soon.

What I did have recently was my first EMG in over ten years. My psychotherapist recommended a neurologist who has helped her patients who are medical question marks. So I saw him in March and he did an EMG. I did not see him yet to discuss my results, but I received a copy of the results today. I couldn't believe it. FINALLY, my EMG results are abnormal. I should be SAD about this, but I am happy that I am finally getting validation after 16 long years.

Here's what my summary results say:

The nerve conduction study of the above nerves showed prolonged DML right peroneal nerve, decreased amplitude right peroneal at the fibular head, decreased conduction velocity right tibial. The monopolar needle EMG revealed increased in spontaneous activity and positive wave vastus lateralis.

Impression:

This is an abnormal study. There is electromyographic evidence of sensory and motor polyneuropathy and possible myopathy. Etiology is yet to be determined. Clinical correlation is required.

I have many questions about these results. Docs suspect I have autonomic nervous system disorder and/or an undifferentiated autoimmune condition (negative for Sjogren's as of now). If the cause of the neuropathy is autonomic nervous system dysfunction or autoimmune disease does that mean that it will be difficult or unlikely to treat successfully? Does myopathy mean muscle disease? If I have both sensory and motor neuropathy, doesn't that mean I should be having motor nerve problems? I am not having trouble walking (thankfully). I do have fine motor difficulties in my hands but I do not have neuropathy in my hands (and hope I never do). Do these results mean that my problems are not small fiber neuropathy or is it possible that I could have small fiber neuropathy too? Should I go ahead and request a skin biopsy? Will any of this show up on MRI (T3 or T4 MRI that shows soft tissue problems)? I have neuropathy all the way up to my butt and was thinking of having an MRI of the pelvis with emphasis on soft tissue because I have some scar tissue in my butt and was wondering if I might have nerve entrapment in the glut meteus or pyriformis muscle (PT suggested this).

Also, here's some bloodwork results that I thought are weird. My B12 levels are ELEVATED even though I went off ALL supplements for three weeks before getting bloodwork done. My B12 levels came back high at 1005 pg/mL. My folate level was >19.9. My B6 level was 13.8 ug/L. My vitamin D, 25-Hydroxy levels were LOW at 23.9. My Vitamin B1 (Thiamine) level was 160.1.

Any thoughts on any of my above questions and/or why in the world my B12 level would be elevated and what it means is GREATLY appreciated.

Thank you!!