Quote:
Originally Posted by Pyr2
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
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Oh this sounds really hellish - poor you of course I can relate. I've been researching more because I'm preparing myself for a negative result from lip biopsy. My SFN didn't show up in skin biopsies taken from my calves over a year ago - and I can't quantify how much it has progressed or not since then. I need it to show up in order to qualify for further treatment such as IViG or Rituximab. What I find most depressing presently is the amount of pain in my feet and legs again. This stopped for a while - apart from tingling numbness. Now the pain is back full throttle and encompasses my knees now too. The only visible sign I notice is that my feet and ankles go a blue-ish purple with Livedo if exposed to air. Otherwise I have no way of knowing if the acid dunking sensation is real.
When my knuckles lock during the night and are painful so I can't move the duvet or pillow - and are swollen of a morning - I am reasonably sure this is my RA. This visual clue reassures me - and allows me to deal with the night pain better. But the horrible burning neuropathy makes me grumpy bad miserable. I hope my Sjogrens lip biopsy proves positive. My new rheumy says SFN is not part of seronegative RA. Which leaves me high and dry unable to access further treatments until either a vasculitic rash shows up and cryoglobulins are positive or else my RA comes back properly. It is sad to want these visual clues so badly I know - but I do nonetheless!
Good luck with IViG. Mat x