Heb
Thank you SO much for responding. So you have APS and mainly neuro symptoms with no other diagnosed autoimmune disease? Are you ANA positive? Let me ask you this about APS. Did you have any miscarriage, thrombotic events? Also- what do you know about levels? In 2003 time frame I had two miscarriages around 11 weeks and for about 2 years my levels were in the 44-70 range. I had zero neuro symptoms at the time. I was tested a scattering of times in the next 10 years after that and the levels were always lower, 22, 13, 14, and even negative. If you test me today when my worst symptoms are, I am positive but barely. Do actual levels matter as to symptom severity? I have also heard that levels can be in response to a viral infection but Im not sure if that can persist (over 13 years for me) that long????

I am always freaked that this is something new thats developed in the past three years and then I need to ground myself that this has been lurking forever. I guess when antibodies hang around the brain that long its not good. I see all the way back in my medical records to 1997 that I complained of facial burning sensations, eye burning, joint and muscle pain, hot and cold limbs, and had several EMGs. Even though it disappeared for years at a time I have to imagine it was the start of something neuro. Im betting its infectious for me too and that all this autoimmune stuff is from that b/c although I have very low serum complements (c1q, c3,c4) I don't exactly fit the bill for classic lupus symptoms. These multiple cranial neuralgias though are pretty classic autoimmune.

Besides pain meds, are you on anything for the APS or your neuropathy- meaning any therapeautic treatment?

And I know you probably posted it on here before, but catch up with me - I imagine you are female - how old? kids? etc.

NIce to meet you under these horrible conditions~ Try and enjoy your long weekend!
L