Also posted on autoimmune thread...

Hi all! I'm new to this thread, and really scarred and confused. I have been in disabiling pain for two and a half years, and it keeps getting worse. I take Cymbalta, Lyrica, Fentynl patch (50mg), percocet 3-4 X per day and mobic to help control the pain, so I find myself either in pain or fatigued. So far, my doctors are not able to help me understand what I have. They know it is autoimmune, but that is it. My neurologist thinks I have small fiber neuropathy, but I don't feel like it fits since my pain is EVERYWHERE from the top of my neck to my toes, and everywhere in-between. Shoulders and legs hurt the worst.

OK - here are my labs:

ANA + (finally) at only less than 1:160 but everything else is going up, so I assume this will too

ACA IGM > 100 (Strong Positive)

IGM - 449 (range 45-250) (was 300 six months ago)
Sed Rate: 16 (was "4" six months ago
ANCA negative

GMI Antibodies: 63 (>30% positive)
ASIALO-GM1: 50 (same range)
MAG ABS IGM normal
GD1a Antibodies: 20 (>19 positive)
GD1b Antibodies: 57 (>25 positive)

IFE not detected
CFS protein: 58 (> 45 positive)

No bands or Lyme detected, and EMG was normal.

My first neurologist immediately started IVIG when she received the results, but after six months of aggressive treatment, my numbers kept going up, so we stopped. Second neurologist looked at my results and said "I'm not impressed, I don't think this is a neuropathy." But I know in my heart it is. I know I have nerve pain, I can tell by now the difference between nerve and muscle pain, which I also have. I also have some weakness, my legs shake and I have to hold onto a handrail when I walk downstairs.

I am really new to this, and really confused. I can't continue to live like this. I do have an appointment with the University of Michigan Autoimmune center on March 26th, and a new Rheumatologist on March 8th.

I know that I can't take any advise in place of my doctor's, but do these results look abnormal? What does the GM1 antibodies mean? Are those numbers high? How high are others? What tests are we missing?

Thanks anybody for your help!!!!!!