Hi MAT,
I have posted here before. I just had a lumbar puncture which showed two paired Oligoclonal bands (not in serum, just spinal) AND was diagnosed on nerve biopsy and EMG with a dysimmune neuropathy - basically axonal and demyelinating. He is calling it a sensory version of CIPD. I initially came up on serum as positive for paraneoplastic antibodies but they were not positive on western blot; however, that test is still pending on my spinal fluid and we will get them back the end of next week. I did have a negative PET/CT scan.

I have a positive ANA, homogenous and speckled, but very low (1;40). I also have Raynauds and anti cardiolipin antibodies which have run the gamut from relatively high in the last ten years (70's range to negative, which they are today - check me tomorrow it might be up again, lol). I also have low serum complements c1q c3 and c4 which are usually associated with lupus.

I went to a very well known neuro research specialist in NY and the best we can come up with is a DYSIMMUNE syndrome - basically, SOMETHING got to all three of my systems. I have the CNS oligoclonal bands, I have failed autonomic tests and now this peripheral stuff. I have tons of cranial issues too (pulling sensations, eyes and throat burning, eyebrows dropping, face twitching, weird face movements). I also have a very high anxiety level -as the dr explained, the CNS is trying to fight an antigen or antibody so thats not unheard of to have psych issues.

I feel very lost that we cannot find this offender. It is ruining my life. I truly believe this is paraneoplastic because I literally "broke" over the course of three months in late 2013- with seizures, headaches, the neuropathy starting, etc. But yet I have had weird immunological markers for a decade before as well as a small neuro episode very similar 15 yrs ago so maybe it was building and building for a long time (unlikely to be paraneoplastic that long). We are going to try IVIG in the next few weeks as well as an IV of antibiotics for LYme because I definitly have exposure in my serum. It wasnt so clear in my CSF.

Anyway, I just wanted to let you know I UNDERSTAND on the spacy, foggy, not yourself and "this is definitely more than just a neuropathy" I am actually seeing yet another rheumy on Monday. I was wondering about sjogrens myself. THis is crazy. I can't believe no one can figure out why my immune system is attacking itself all over!!!!!

Best,
L